A Good Show

There’s this really good show on Netflix called Michael, Tuesday and Thursdays and I can’t recommend it enough. If you want, you can stop reading there and go ahead and watch it. For any other reason, I’ll write a little more.

It’s been a particularly rough Saturday. I’ve cried hard twice, not to mention that crying gives me migraines. So once I finally get it under control, if I just so happen to make the very human error and have the audacity to cry twice in one day, I get the beautiful gift of two migraines. Cool!!!! Ah, that’s just self pity at work. I’ll ignore it if you will. The point is, I’ve had better Saturdays.

It probably doesn’t matter a lot why I was crying. Although, given the over-arching topic of this blog, I guess it does seem pertinent. Mostly it has to do with the exhaustive, skin-crawling, seemingly unattainable task of accurately describing this illness to other people—the people you care enough about to sit through all the expected questions, and probably a good three or four you haven’t heard before. It should be such an easy dialogue. A simple back and forth of mostly yes or no questions with neutral answers that would fulfill every facet of a humans curiosity. That’s how it should go.

For me, it rarely does go such a way. I can’t help but wonder, if the disease were different, would the discussion be different? And you can’t help but be me and hear an obvious, resounding, validating y e s as an answer. But that’s engaging a reality that doesn’t exist. And for the most part that rarely goes well for me.

I know

Another side of the coin to consider, is what it feels like to be relatively healthy, and be on the other side of a persons life with M.E.. A life that can so easily look the part of ordinary, but can’t produce the tangible value of a “normal” life. It’s not to say the other person sees it that way or doesn’t, but I’m trying to imagine my own personality, character, and basic psyche from before I was sick (another mostly impossible task, by the way). How would I feel about a person, “presenting” as I do? Maybe I would have no problem as seeing them as a product of their own choosing. Maybe I would see them as simply not trying hard enough. I would probably, which is how it goes most of the time, assume I had answers and capabilities that would keep “hypothetical me” from turning into this sick, human-wasteland “me.” It’s a common response, and I believe it’s actually a defense mechanism, by the way, not at all a mal-intended one.

In this circumstance, seeing someone who looks like you and mirrors your life in any number of ways, simply “succumb” to some disease that stripped them of nearly everything, you need an out. You need a reason why it could happen to me but not to you. I’m talking about livelihood, and the loss of it. What’s to keep you safe from knowing it couldn’t happen to you? The mind has its methods.

It makes sense. In thinking of my own mind and ego, I’m presuming that that wouldn’t be a too-far-off possibility of how might I react. I could naturally assume my will power would be stronger, my body would fight it off, I wouldn’t let myself sink that low to a state of non-productivity and lack of social interaction. Or perhaps, I might see it as a simple lapse in mental state—and I’d want to trust mine enough that I’d never let it be that vulnerable. These are all just chance reactions that I’m considering I could have—as well of course, reactions I’ve witnessed over and over and over again. In either case, the mental default of the person on the other side makes sense.

It does however, strain the sick person, to the fault of no one (except the NIH ahem ahem). Psychologically, it’s a struggle, which puts more pressure on the brain, and so usually means a poor physical response too. With M.E., emotional stresses are just as causal for a crash as exertional ones. So every time you’re having to re-explain something, or explain it from the beginning (which feels at times, impossible), it can come off as an ongoing battle that you’ll never quite win. It sounds like a blatantly negative attitude, but it’s because we know it’s impossible to convey an illness to a person, when that illness isn’t even well defined in a book. Or among researchers or doctors. Or google. If med school hardly touches it, where do we start?

We’re literally learning in real time how to live a meaningful life, when it can’t deduce meaning in all the conventional ways. That struggle is enough to make anyone…dare I say it, fatigued. But then to *feel* like you’re constantly having to convince people that you are in deed, trying is another struggle to join the mix. So at times, for me anyway, it can feel crazily overwhelming. And either rationally or irrationally, sad. A real hurt. I guess it could easily feel that way for the person who loves you on the other side, hating to have to watch this illness wreck a person in real time.

I probably fail to consider that side as much as it deserves.

From watching this show, I’ve realized a lot of people, particularly those struggling with depression and anxiety disorders, never arrive at the road called “Cured.” It’s one reason why they’re in therapy. Some can be cured, certainly. But some are simply learning to live and survive through the extreme discomforts they feel daily, hourly, moment to moment, whatever it is. And that is something so many of us within these blurrily defined categories of “lacking conventional health” share.

None of us have to try very hard before we feel alone floating on our individual islands. But there’s also the truth that we’re enduring these things, these lacks or voids, together. And it’s good to remember that, for whatever potentially sadistic reason. Maybe not in an “Oh others are in pain too, thank God” kind of way. But that we’re all up against certain things, and our collective seeing them through to the other side, brings us closer together in a human sense. At least the possibility of it exists there.

The more one person defies their mental or physical limits, the more likely for another to do it, and so on and so on. It’s not about beating the disease, but finding a path where not everything in life feels predetermined by it.

Maybe that’s the hushed solidarity we feel in sometimes hearing about the hardship of someone else. Maybe it’s a quiet, subtle reminder, that in each of our respective battles we’re individually aginst, we’re not alone. And that reminder, it seems, can never be bad.

In any case, I’m speaking in specifics and generalities. The specifics are why I cried, but the generalities are the bigger take away. This will always be hard for me. It may be for a lot of people. But the best I know is that by continuing to talk about, explain, and defend mecfs if you have to, the closer we will come to a time where we won’t have to. I wish we could be there now, but there’s no speeding up society with one press of a button. It’s up to all of us now. Keep talking. Keep listening. Don’t be afraid.

Yay!

Last thing: The song introducing the show is so good. I’ve put it here now so you can plug your earphones in and listen. It’s worth it.

Health, Happiness, Another Wild Saturday Night

Strega

I’ve just finished reading the most beautiful novel, Strega, by Johanne Lykke Holm. I am stuck in it. And on it.

I finished it days ago but my mind still feels trapped in the delicately told domain—A fantastical, once celebrated Hotel secluded in the mountains above the mysterious town of Strega. It’s called The Olympic, where nine 19-year-olds will supposedly be taught how to be turned into proper maids, women, eventual wives and mothers. Three older women mentor the nine, but the story is told through the perspective of Raphaela, a girls whose voice is haunting and lonesome but immediate, succinct, and deeply resonant. I read it in two and a half days, and I’m not exactly a fast reader.

Of course, the ostensible “plot” of the novel is not exactly what pulls you in, although even on its own, with only average prose it would have this capability. Truthfully it’s the one-of-a-kind style in which it’s written, translated from Swedish in fact, that makes it compulsively readable.

The story is told with incredibly ornate, impossible detail. It’s as if muted dead flowers mixed with a tray of metals and crystal diminutives and fragrant oils, inside a strange, old and deviant hotel came alive to hint at its past and warn of the future. Nearly every sentence feels like it took everything from the writers fastidious mind to form itself, and then it took more. And that’s how it reads too—as though the words via some supernatural force possessed someone into airing them out, refusing to be ignored before materializing through bleeding ink on a fresh white page.

The fragility and uniformity and meticulous measure with which each sentence offers itself becomes a quieted mediation, edging toward prayer and mercy, on lonliness, on the unbound love of female relationship. On autonomy and community. But the text isn’t lonely itself, it’s merely strange and dark and unflinching. It reaches out and resonates with the readers own memory, reminders of ones own loves and losses, and maybe most of all, on that undefinable nature of meeting someone and knowing them before they even open their mouths to speak.

Like most books I finish, I felt a total void afterward, because the author pulls you in deep, with mysterious descriptions that somehow poke at something in the depths of you. Places in the body you hardly knew were there. And the dream-like writing, which sometimes snakes into the “everyday descriptive” sort, is done so seamlessly—It’s as if a Murikami novel and a Wes Anderson film had a baby. Of course I had to restrain myself from underlining every other passage of words because they’re so immediate, I swear I smelled rose water the whole time. You’ll get what I mean when you read it. And you WILL read it! You simply must.

Even the cover, smooth matte black with beautiful gothic flowers…it makes you want to go back. The book itself feels like some secret treasure. I keep it in my bag, and I don’t really know why.

Here were a few of my favorite passages…don’t worry, no spoilers.

“I longed for my own room, the locked door, my little cell. I was a lonely person, I had been alone all my life. One is alone even in the company of ones mother. One speaks, and it echoes inside her.”

“The sky laid itself over me like a horse blanket.”

“We came from various places, but were of the same age and mind. None of us wanted to become a housekeeper, and none of us wanted to become a wife. We had been sent here to earn our keep, to become people of society. We were daughters of hardworking mothers and invisible fathers who slunk along the walls.”

“But I did as they had asked of me. I liked being an obedient daughter. It felt like being held by a beautiful patent leather collar.”

“Across the street from my sisters apartment is some student housing. I used to hang out there, by the main entrance, staring at anyone who walked by. They were all carrying bundles of books and wearing those sand-colored wool sweaters, you know, the ones one imagines smell like horsehair or a run ruined by damp. When I saw them, I wanted to spit, but I didn’t, out of self respect. …From my seat on the living room floor, I could see my mother walk u. She had cut out an ad from the newspaper. She called to me, as if I were on the other side of a frozen lake.”

“The tar burned into my lungs and into my fingertips. If you can’t give your body the good stuff, give it the bad stuff.”

“I called them the ghost rooms, not because they were haunted, but because rooms unvisited by humans simply begin to attract evil.”

My favorite one…

“Our parents were all deluded about the fact that the the world had changed and would not go back to being what it once was. They did not believe in a future without the good woman and her duties. They wanted to prepare us for a life where we would care for child and home, where we would stay with one man, no matter who he was, where our hands would repeat the same movements. At the hotel, our hands always repeated the same movements, but this was no place for a good woman.”

“There was something serious and industrious about her forehead.”

“Did you see him, she said during intermission, the murderers face?” I shrugged and bowed my head to hide my blush. I had an urge to put a curse on him or stab him with my knife.”

“I sat up with a jerk, suddenly wide awake. It was as if my body knew something that the brain hadn’t registered. I took out my lighter and quickly crossed the room. Held up the little flame above the beds and counted.. [all eight girls] Cassie was gone. I rushed over to her bed and tore the covers off, my hands searching the sheets, as if she might appear there, doll-size, hidden under the pillow.

…The bed was otherwise untouched, as it had stood since early morning, when the sun billowed in through the window like flames. I crawled across the bed and pressed my my hands to the wallpaper above the headboard, convinced for a moment she had been swallowed by the wall. I walked over and shook Alba. I whispered I can’t find Cassie.

…Her bed stood in the middle of the room, perfectly arranged, like a crime scene.”

Flipping through the book now I simply want to write out chapters so you can swallow them whole. In actuality, the chapters swallowed me whole. But I was ripe for it. I love when books take you that far away from a weekday afternoon.

In other news, this is the third day in a row where I have felt crashed, weak and heavy, and I have to consciously work hard not to fall victim to the fear that my entire health is going down. Crashes happen. I probably pushed it too hard last week. I have to believe that one more day of rest will be enough to pull my out of it. I also have to believe if I still feel this way tomorrow, that’s OK too. I just have to take it easy. So why not wax poetic about a book I love so much it feels like I’m holding a secret treasure, just flipping through the pages.

All will be well, and worrying, as they say, is like a rocking chair: It gives you something to do but get’s you nowhere. I guess that’s the things about to-do lists, they always wait for you until tomorrow. But it’s my sisters birthday, and birthdays don’t wait! I’ll plan for the best. Until then.

Health, Happiness, Stregaaaaa

Thank You Merric, My Eternal, Reliable, Recommender of Incredible Books ;)

A Little Older Now

A little while ago I was haphazardly complaining that I couldn’t believe how old, number-wise, I was. I didn’t really feel older. I still feel like an idiot kid figuring it out litrally (said with accent) every day. My cousin Brenda piped in with something that should have been obvious. “We’re all getting older Mary. You’re not suddenly older than us!”

What a self-evident, seemingly obvious take on things. I had it somehow in my mind that only I was getting older, while everyone else stayed the same age. She was right, we were all looking the same, while somehow kids were growing and seasons continued to change and evidence of time past surrounded us wherever we looked. I guess that’s all to say, It’s been a while. I’ve missed you. How’s things?

I had no idea how to re-enter this little world I created so long ago and then took a sudden hiatus from for what, two years? Was I doing other important things? You could say that. (I wasn’t.) I was just living, plain and simple. The way people in picture frames and advertisements live. In some sacred moment— without a history of the last 10 years. No memory of being consumed by illness. Nothing lost. All I could ever need, I have. I’m just a smiling girl in a picture, no past—inhabiting ‘the eternal present’ as Tolle calls it. I erase it all.

The taking. Of friendships, relationships, autonomy and money and time. The leaking. Into every corner of my foolish little life. The waiting. In line at the pharmacy. In the first room at the doctor. The exam room at the doctor. On hold with the pharmacy. On hold with the insurance. On hold with the doctors office. And the loss, naturally. The loss of self to something I thought stronger than me. Of livelihood. Of growing into something impressive. Of opportunity. Of ways to make a mother proud.

There had to be a reconciliation with all of all that. And in truth, I might say that every day is exactly that. An eternal letting go, surrendering to what was and is real, all the while continuing to move forward. Embracing what is real and true by the ever changing second. Not to grieve the same things twice. In order for Life to overcome loss. To give what used to be taken. To have gratitude while I wait, because hey, at least I’m able to be here in the supermarket and wait on two feet. Not for long before it hurts, but I am somewhere. I am not a living couch.

This all points to my life now and how things have changed. When I look back at the move to Colorado, I see just how much of an insane shit show it was. We left with high hopes that Rocky Mountain air and crisp clear Colorado water could do nothing but help me. I’d have to feel better here, right? Wrong. It’s all too hilarious that I moved back into my childhood home, but moved into the basement. (It’s a finished walk-out OK!?) Every 36-year-olds dream. I did my best.

Looking back now from a stage of much higher functionality and a new, certain “availability” of health, I see how bad it was. My memory fills with images of me crawling up the stairs to the kitchen, on four legs like a monkey, because I was too weak to walk on two feet. Dizzily stumbling to the bathroom every morning, squinting in pain. Clothes all over the floor and Monty’s chew toys, because there was no energy in me available to do unnecessary things. Multiple Zooms with multiple doctors—zero real answers or treatments. A constant shortness of breath. A darkness under the eyes.

I rarely, ever left the house. People thought it was because of Covid. For me it was just life. For so many with chronic illness, quarantine was simply life as they already knew it. Covid was nothing but an interesting reminder that other people were also at home on a Tuesday afternoon. (Plus a whole lot more. We’ll get there.)

The truth is, I am very, very lucky. I write that with a strong knowing that it’s not even fair, what I’ve been given, because it’s what everyone should be given: a knowing, caring doctor. An MECFS specialist who treats exactly and only that. Proper healthcare. I can hardly convey how stark the contrast—visiting 6 different doctors in New Orleans to address eight different issues and dispense twenty medications, compared to one, bright, excessively knowledgable doctor, in charge of all my medicine, who knows so much more than me about this disease—which, it should be said, is how it should be. The patient shouldn’t have to wonder if the doctor has ever heard of her disease, let alone whether she says its name out loud. That is, if she even mentions it out loud at all. It’s always a gamble. Tell them or don’t tell them? Don’t. Unless they say it first.

Imagine. This will be a time in history, one day, when we look back and say “It was a gamble to even say out loud the name of your disease in the presence of a doctor. It meant they likely wouldn’t believe you. Which meant they couldn’t or wouldn’t help you. Which meant, well, here’s the number to a therapist, in the end. One day in the future, we will look back at this reality in awe. Shock. Shame.

With a lot of luck, but mostly hard work and some gambling on the part of my sister, she was able to arrange an appointment with Dr. Yellman, of the Bateman Horne Center in Salt Lake City. It’s only four hours from here, so even when I have to go, it’s a beautiful drive. I think most ME patients would be eager, health-willing, to drive for days to see this kind of doctor. Like I said, I’m lucky as hell that I got in, and I am far from the most deserving. I’m constantly grateful to have him on board and also a bit woefully heartbroken that so many sick people don’t have this access. To those I say, please hang in there. We will get there. There’s work to do. There’s so much work to do. But we can do it.

I should perhaps clarify that no, I am nowhere near perfect health. What changed is that my specialist is treating all kinds of things that a regular PC doc wouldn’t. Medicine like Cromolyn for Mast Cell Activation Syndrome, Pyrodistigmine for POTS, electrolytes and compression leggings for all parts dysautonomia. (That last bit is the easiest change you can make right now. I’ll post the leggings I use. That and at least one liquid IV a day.)

I still crash. Push and crash as though I haven’t learned this lesson a thousand times. But my crashes are less extreme, and a lot less long. This last month reminded me I am very very far from invincible, and it still doesn’t take so much for me to overdo it. I still need to be cautious with myself, but it’s difficult when I feel energy not to want to run outside and jump on the roof of my Toyota Camry and, I don’t know, sing Taylor Swift at the top of my lungs. Why? Because I can is all. That’s it really.

There is plenty more to say, about everything. We’ve got two years to account for! But mostly, I’m still me.

I hate to say it, don’t know how to say it, except to say it. I finally lost Monty, which I came close to thinking would never really happen. It was exactly a year ago next weekend. I’ve so much still to write about it, and him, and the whole thing. But the most I can say for now is that yes, it was very hard. But I realized that my fear of losing him was actually worse than the loss itself. When the time comes, you know. When you’re close with another soul like that, you know. Monty chose when and where, and I was simply there to pet his velvet ears and take in his smell one last time. OK, so I’m crying now. That happens sometimes and it’s OK. I think how wasteful all that fear of losing him was, when he was panting directly in my face!

Dogs are incredible teachers. Monty was next-level, and what he gave to me, in nearly every category of life, was precious. I really cannot believe how lucky I was to have such a dog as my own. It was a gift and a privilege to have him. I will never forget it.

It’s been a crazy two years. But I’m still here. Still Surviving. And Monty? Well, he’ll live forever ;)

Love You Buddy

Health, Happiness, Hellos & Goodbyes

Lost & Found

But First.. Lost

I don’t remember what I did for Fathers Day 2020. Or Memorial Day or Cinco De Mayo or my brothers birthday. Much of the first half of 2020 feels like one long blur. Like a panoramic photo taken with the camera in motion. This is mostly because I was living what felt like the same day, every day, over and over. Each morning and the fallout that followed felt like an impossibly perfect cutout of the day before.

I can remember specifically the day before Mother’s Day, because my mom, who insists every year that we buy her absolutely nothing (a request that, every year, we reliably ignore) actually asked for a present this time: that I take a shower. Not because you stink, she assured me, I just know how badly you want one.

We both had to laugh at the request. Despite it being a painstakingly long shower that required way more effort than it warranted, and left me out of breath, I delivered. I owed the poor woman at least that much.

For all I cannot remember, the discouraged, scary and exhaustive moments stick out like thorns in my mind. I remember just how much I wasn’t doing–which was a lot. I practically memorized the lines on the ceiling. I remember how much help I required and how much I hated asking for it. I remember the enormity of things to figure out on my plate, and how impossible it felt to get any of it done.

Every morning, I remember dizzily staggering to the door to let Monty out, just so I could turn around and clumsily zig-zag back to bed and collapse like lead onto my bed. That was about as much as I could muster that first hour of waking. Summoning the strength for the crawl I’d have to make up the stairs for a coveted cup of coffee required a mental and physical preparation that you’d give yourself before running a marathon.  Every morning was a marathon.

Once upstairs, I’d sit with my coffee, look at a sudoku puzzle in the paper and haphazardly scribble in a few numbers. Then the post morning crash would settle in like a fog. It seemed like I woke up just to begin a slow decline back to where I started.

Monty would loyally follow me back down the stairs. Back to bed, back to life from inside a window. He’d lay beside me and sleep, but was on all fours as soon as I started to gently kick the sheets off. I felt terrible for the life he wasn’t living, on account of me. I felt terrible in general, for all the things I wasn’t doing. But mostly, in a word, I was simply<em>lost. I felt as though I were floating in the middle of the ocean without a speck of land or answers in any direction. I can’t remember ever feeling so lost.

An exacerbated number of symptoms seemed to swallow me whole, and a new set emerged that we couldn’t completely explain: A strange and unprecedented struggle to take a full breath. To breathe without having to think about breathing. An ulcer that would cause extremely painful episodes— where I’d lay on my left side, eat a handful of Tums and say the Hail Mary until it’d finally subside. I’ve never eaten so many Tums in my life.

I felt so far away from actually living. I rarely knew what day it was, or cared. Tuesday, Saturday, Memorial Day, it all felt like the same stretch of time. It didn’t matter. Time lost its urgency and importance. Sometimes it felt like it hardly passed at all.

Other times I felt I could watch it fly right past me. As humans, of course, we can witness the literal time pass. I’d watch neighbors go for walks and mow their lawns, usually in awe. I watched family bolt up or down the stairs to retrieve something, without a second thought. My aunt Amy’s energy seemed supernatural. Holidays and birthdays would come and go, but I remained stagnant. I did my best to keep up with friends back home, but talking on the phone really exhausted me. There were signs and sounds of life all around me, but so little of it left inside. It’s hard to believe that was just one year ago.

On top of my excessively depleted state, we had moved to a new place–meaning I would require new, local doctors to continue treating me. It meant starting over, and having no idea where to begin when the doctor inevitably asked “So, what brings you here today?” That *task* alone was one of the most psychologically exhaustive and traumatic events in recent memory.

Every part of it was problematic, of course, because ME/CFS is a <em>multi-system </em>disease, meaning it requires a multitude of doctors to address the various issues it causes. It felt like failure, again and again, being rejected by doctors who wouldn’t even agree to see me. Can I blame them? Maybe not. One look at my health records and it’s understandable why the average doctor would scare off easy.

A few of them, including an overly-confident son-of-a-nutcracker, yelled at me. He said the doctors who had put me on pain medicine had actually put me in a Prison. I remember him pointing his finger accusingly straight at me, chastising me as though I were a child who’d done something terribly wrong. I walked to my car shamefully and lost it in the drivers seat for a good twenty minutes after that appointment. I was never going to convince these people to continue to regimen I was on. If that were the case, I was about to begin suffering a lot more than I already was. I felt so afraid of how much worse things could get without the appropriate care. The ulcer flared in response. A wind pushed me out further into the sea. Directionless.

The night after that appointment, I laid awake and replayed his words in my head. It struck me that the guy had it completely backwards. The pain was the prison. The pain caused immense suffering, left me at times incapacitated and unable to do simple things. It kept me indoors. The medicine is what freed me from some of that extremely restrictive pain. It allowed me some functionality and a semblance of livelihood.Some of my energy could restore itself once my body (and mind) weren’t consumed with fighting pain 24 hours a day. How could a pain doctor have such a concept so blatantly reversed?

The worst part was knowing that it didn’t matter. Whether I was right or the doctor was wrong, the battle wasn’t one I could win. He had the power, and my disagreeing with his professional opinion wouldn’t change the outcome. That’s a lot on a patients shoulders. If you’re unable to convince people of the help you need, most detrimentally doctors, you’re not going to get any. I was stuck. Lost again.

That doctor was adamant that a spinal chord stimulator was absolutely my best option—something that both of my doctors at home completely disagreed with. Wasn’t a piece of machinery inserted into my spine just as much of a prison, in the context of his metaphor, as oral medicine? It surprised me that someone who called himself a specialist couldn’t see any of this.

More and more the conditions of my life felt further out of control. I saw life around me, and I felt the tiny seed of my life that once was, but it was all totally buried by layers of circumstance beyond my fixing. The psychological damage was hardest to address, and I struggled to summon the energy it takes to keep your mental health in check.

This is where a little thing called support made such an immense difference in my life. While people around me helped in my search for answers–which on it’s own is encouraging itself–I was constantly offered a hand, a shoulder to cry on, an ear to listen, and extremely positive words. Not out of touch words, but reminders that I was not alone, and in the meantime while I tried to find my way out of the hole, family and friends and extended family were looking out for me. Even if I couldn’t see a way out, people like my mom would gently remind me that we’d always come through in the past, we’d always found our way out of the hole and we would do it again. Even if that meant one day at a time–which is basically the only way to go when you’re in survival mode.

I clung to those small whispers of hope and reminded myself I had emerged out of these hole before. I had to work hard to mentally process each day and not become buried by the story I told myself. It’s very easy to see the world as conspiring against you. I remembered the words of Paulo Coelho: “We warriors of light must be prepared to have patience in difficult times and to know the Universe is conspiring in our favor, even though we may not understand how.” Despite the strong tendency to mentally unravel, I had to believe those words and sentiments like them. I would see the other side of this, I just had entirely no clue how.

Then again, we rarely ever do.

It was sometime in early June when extremely promising news arrived, thanks to a gargantuan effort on my sisters part that finally materialized. She’d managed to get me an appointment at the Bateman/Horne Clinic in Salt Lake City. This clinic specializes in ME/CFS, meaning I was finally going to see a doctor who I didn’t have to prove myself to as though I were fighting for my life in front of a judge and jury. It meant getting the care I so desperately needed. “July 13th!” my sister enthusiastically beamed over the phone. “You’re in.” 

And just like that, I was found. I could see land again.

Could it be that simple? Well, It should come as no surprise, but it’s pretty incredible what a a doctor who specializes in the disease you have can do for a person. Imagine being diagnosed with breast cancer and being sent to dentist after dentist, each with conflicting advice but all sharing one thing in common: they simply don’t know how to help you. You’re in the wrong territory, and you can almost feel it as soon as you walk in the door. 

Securing that appointment with Dr. Yellman of Bateman/Horne is ultimately what and who is responsible for me being where I am now physically–alive and actually feeling alive. I cannot believe what the quality of my life was just a year ago, and how much progress I’ve been able to make. It only reinforced to me that so much of the suffering caused by ME/CFS is completely unnecessary, because a lot of it comes down simply to access to the right kind of help. Most people don’t have it, and the fact that I can count the number of ME specialists in America on one and a half hands is one big reason why. If the remaining doctors haven’t even heard of ME/CFS, or worse, have drawn the wrong conclusions about it, you might as well be a cancer patient seeing a dentist.

It’s no wonder millions of people are struggling, mentally as much as they are physically, because we’re simply lacking appropriate and accessible resources.

It doesn’t have to be that way, and it’s something I plan to work hard on fixing. To conclude, for now, I should emphasize I am not cured, by any means. It still takes a lot of medicine and methods and monitoring to keep Humpty Dumpty together again. I still crash, battle migraines and pain, and my energy envelope is still not in large supply. But a lot of my health feels like it’s in my hands again, and the rest of it lies in the hands of a doctor who I trust implicitly– not in the guessing-disguised-as certainty from doctors who simply don’t know better.

I will write more on the major things that helped bring me back to life in the follow up. But I just want anyone out there to know who is severely struggling right now, you may be by yourself, but you are not alone. You may be 36 and living in your parents basement (ahem) but your life can still be meaningful and happy. Sometimes it can be hard to keep up your willpower to live when you have to fight so hard for it, and ‘living’ isn’t giving you a whole lot to hang on to. I’m just here to say, hang on. Not only can things change, the way we see ourselves and what’s achievable in our lives can change. All of these things matter. I don’t pretend to cIaim they’re easy, only that they’re possible.

Keep on keepin’ on. We’ll get there.

Health, Happiness, Alive Again

P.S. This young old man says hi…

Hi

The Belly of the Beast: Chronicle of a Crash

My aunt is dancing in circles around me. She’s cleaning and organizing any and everything around the house. She just brought oatmeal and medicine to me in bed for the ulcer that’s upset again. Now she’s painting the dark spots on the baseboard in the bathroom, and she’s humming while she does it. She’s like a little home-improvement fairy. Last week, it was my oldest brother Doug in similar shoes. 

He talks and makes jokes while cleaning the kitchen— wiping down the counter the way a good bartender would. He makes coffee, cooks breakfast, fixes the broken technology around here, then asks what’s for lunch an hour after breakfast. My mom and I groan. Neither of us think much about food, nor about life past the next five minutes. He volunteers to run out for groceries and pick up prescriptions. When he returns, he’s still armed with energy to cook the food he just expended himself on buying. Incredible. 

Each of them work so fast and seamlessly between small jobs. I just watch and listen to them in total awe. I am pathetically stagnant, in one of the worst crashes I can remember. I feel like the still, unmoving eye of a hurricane, and people like Doug and Amy are the winds and rain and sheer forces of life blowing up all around me. 

Meanwhile, I’m reeeeally helpful…

Hi would like yall like help doing the dishes? Just kidding I can’t stand hehe.

Their ability to complete tasks, one after the other, without having to stop in-between astounds me. Simple things requiring any iota of strength—running down the stairs for instance, which my brother does without a second thought—appear miraculous. I might as well be watching Doug walk on water.

Those stairs. They nearly haunt me. I crawl up them in the morning on all fours. I have to catch my breath at the top. I have to catch my breath all the time. 

I’ve never had shortness of breath this severe or last this long. We can’t figure it out. My o2 level is typically fine, though it drops in the 80’s when I’m upright. I cannot sustain a normal blood pressure. Every time we take it it’s somewhere around 80/50. My mom unwraps the velcro cuff and says Well, that would explain you feeling half dead. 

So often these last few months, I hardly feel like a person. I’m more like a spirit dragging around a clunky, metal, ginormous body that doesn’t work. It won’t go. It’s broke. But my mind is alive and wild as ever. I’m living mostly within the confines of that mind. The body cannot carry out what the soul craves, so nearly everything experiential is internal.

Anything requiring an outer effort is reduced to absolute necessity. Bathroom and back. Feed dog and lay down. Fill water glass, lean against the sink waiting, trudge back to bed. There is no room for recreation.

Monty Gets It

I spend 95% of my time supine. Never stand when I can sit. Never sit when I can lay. That’s basically always the crash mantra, but it’s so especially true now. I find myself craving soft surfaces and soft clothes. I have no idea why I love looking at dresses and runway shows online. I can’t imagine wearing them–No, I can only imagine wearing them. But I actually never would. Fantasy I guess. Still gives a dopamine kick.

I hear my aunts phone ring and she answers it, while working! My brother does this too—which is again, unbelievable. How can they talk and listen and continue their task? I forget about socializing because I’m so busy trying to, you know, breathe. I forget that we need it; we’re humans and we crave connection. I need it too, and yet the sound of my phone ringing almost makes me angry. Why? Who would call me? I’m a moron!

Mostly I’m just irritable; exhausted from continuously wearing out so easily. I have nothing left to give on the phone. I am a pretty clutch texter, though. I feel a lot like this kitten I saw on Instagram…>>>>

Only the people who I love and love me would call. (Pharmacies too, and a few scammers, too.) But talking takes energy. Even laughing takes it. Sometimes I take the plunge and pay the price. It’s worth it. For the sake of my soul it’s worth it. But right now, if my phone rings, I silence it and roll over.

This is how and why chronically sick life becomes so isolating. Relationships take maintenance. It’s why I’m so often a bad friend, sibling, aunt etc. etc. in terms of ‘staying in touch.’ And yet…

I’m lucky. I have understanding friends. An extremely supportive family. Most have learned my limits, or at least witnessed them and know what to expect. Even if they don’t understand it, the closest ones accept it and stick with me. I’m lucky as anything for all of them. 

How Doth Thou Resist?

I keep promising Monty a walk, but we never go. Just to the backyard where I clumsily throw a tennis ball and he’s as excited and focused as the first time he learned he could drop a ball in front of me, whereupon I would throw it, and repeat this action to infinity. His cheerful, eagerness for every day of his life brings me incredible joy.

He eases my burden so often, in a way only dogs can. Just watching his tail wag and touching his velvet ears lightens me. Softens things. He follows me everywhere, even the bathroom, which I read is an instinctual protective measure, and now it kind of makes my heart melt.

Hi I’ll Just Be Here While You Pee

 

I notice the healthy people never calculate cost. Physical cost. It never seems to be whether they have the energy to do something, only if they have the time. We all pay with different currencies. I cannot remember it. I cannot remember what that ‘energy-on-tap’ feels like anymore. I only know I had it once. 

I dream all the time about the day it comes back. I still believe I will have a life one day where a lack of health won’t be so consuming, so dominant. For now I feel like I’m standing in the same spot in the sand, the ocean of sickness coming in and out with the tide. The water crashes over me in waves again and again. Sometimes it relents, I will feel OK, (an extremely relative term) attend a family gathering. I appear ‘well enough’—healthy enough. Other times the waves wash over me and I nearly drown in them. I can barely see.  

I’m in that place now. I broke my own record for how long I could go without a shower/bath. The answer is way too long, mkay?! But this crash has been so powerful. So persistent. A shower just feels like a joke of an idea. My aunt keeps offering to wash my hair in the sink, but even that idea exhausts me, and I’d still feel dirty anyway. Poor Amy, I must really look rough. 

Sometimes it all becomes too heavy. Last week I lost it and the tears came out streaming hard and fast. I could barely speak—-couldn’t convey what was wrong. But because my mom is who she is, I didn’t have to. She patted my disgusting, unclean hair, not minding what an insane mess I was. “It’s OK Mary, just let yourself cry.” Her voice was shaky too and I thought how hard this must be to have to watch her kid like this and I hate that aspect so much. Love like hers is strong and remarkable and brings me back on solid ground. 

It’s easy to forget she has this disease too. And so does my sister. Watching her children suffer is worse than anything, including her own physical suffering, she says. I believe her. I also believe I’ll be well again. I’ll at least be better than the human disaster I am now. One day, the roles will finally reverse. I’ll be healthy and able to care for her. Take her blood pressure. I joke that as reimbursement for their long-term care, I’ll change her and Marcs diapers when they’re absurdly old. It makes all of us laugh, but I really do mean it. 

Even in a crash as devastating as this one, I have to believe I will come out of it, despite not remembering what I felt like before. Once I’m better, I won’t remember how bad this feels. It’s such a strange phenomenon. I can’t wait to not remember.

Note to self, this blows really hard.

Things will change, they always do. This will pass and things will improve. I don’t know how it will happen, though a few ideas float to the top each time. Must keep writing. Must keep trying. Must keep believing. 

For now, the challenge remains the same: finding the balance between surrendering to what my body needs, while pushing back on the things that I can change. That need changing. I won’t give up on pursuing health and trying to accept that my definition of ‘well’ will be different from others. I’ll contunue to try and recognize joy, meaning, and gratitude among the muck. Cry when I need to cry, but try to laugh more.

I’ll continue to pursue a version of myself that I can be proud of, even when I’m swallowed whole by this miserable beast. That part is the hardest, but most worthwhile. 

I won’t give up on fighting for the NIH to see us. 

My eyes are heavy again and my head is clouding up. Time to drift away to some tinkered version of here. I can hear my aunt in the kitchen, sweeping, chatting. My brother shuffling up and down both flights of stairs. My moms hand stroking my hair. Thank God for help. It will be OK. Keep trying. Keep going.

Health, Happiness, The Belly

 ***PSA!!!***

I am happy to report that after three extremely hard, very sick months, I have finally emerged out of the rock-bottom part of this crash. I can breathe again! I’m on two feet, thanks to prescription, altitude, and stress adjustments. I was finally cognitively capable of pulling some writing from the last few months together. Anyway, if you’re going through hell right now, in whatever capacity, I feel you. Keep going. It gets better.

Colorado, Crashed, Covid, Catastrophe

It’s hard to know where to start. 

I kept thinking things would get better. I would get better, then I’d write. I’d take a shower first. I’d wait until this migraine subsided. I’d pack a box. I’d unpack a box. And then and then and then. And now…

Now, things are worse than ever! So much has happened since I wrote here last. Now I’m sitting in our living room in Colorado, soaking my infected toe in an Epsom salt bath. I’m icing my head because I’m still stuck in the migraine cycle. I’ve only eaten an apple with peanut butter for dinner because my stomach ulcer went from mild to angry in the last month and I don’t want to upset it. I am weak, heavy, and ridiculously short of breath. We having fun yet?!

I knew the move would be tough. Moving is hard, regardless. Moving when you’re sick is really hard. Moving followed by a severe crash and a world-wide, viral pandemic? Well, that’s just good ol’ fashioned fun.

Remember when we all thought 2019 was such a crap year? HAHAHA.

Matt and I packed up my moms Hyundai in March and drove from Louisiana to Colorado with Monty in the backseat and lots of road trip food. We took three days getting here and it was a pretty fun voyage, except for that part when we almost died on Red Mountain Pass because it’s an insane pass. Four days after arriving, the world turned upside down. 

That Red Arrow is the Part Where You DIE

 

But things are such a mess on top of that, I barely even think of the damn Covid! No, that’s a total lie. I worry like hell about it, it’s just that the list of worries is extremely long right now. 

For starters, I am a walking catastrophe, it’s almost hilarious. Except that it’s pitiful. In fact I’m more of a sedentary disaster, a truly rare breed of human catastrophe usually only found in the state of Florida. Kidding. You get the idea, I’m about as useful as a trashcan lit on fire right now. A waste of oxygen! And there’s already so little of it in Colorado, as my Uncle Tom says, ‘It just don’t be right.’ 

On top of that there’s a lot of stress and exhaustion in trying to find doctors who will continue treating me, (so far a disaster), praying my toe doesn’t fall off (another day, another story), praying Monty’s toe doesn’t fall off (another day) regaining some functionality (I Just. Want. To SHOWER.) and finding a way to adjust to all this change without blowing a gasket. The move. The covid. The lack of rain in Colorado (Boohoo) I’m trying hard to trust it will all work out. I know so many people are trying to do the same. It ain’t easy.

Twinjuries

I wish I could remember the last time it was this bad, that way I might recall some pointers on how in the hell to get through it. You always forget how debilitating this thing can get. But I know the answer, even if I can’t feel it intuitively. One foot in front of the other. Such a simple idea, so hard to implement. It’s *litrally* all I’m capable of for now. So it has to be enough, even if it feels insanely insufficient.

Suvival Mode–that’s how a crash goes. Feeling guilty about what I’m not capable of is no help. Just survive the day. Or the moment. And keep moving forward.

Lately much of my life has been reduced to one breath at a time, especially because so often I feel like I can’t even take a full one. The mind tease has been that all the worries condense and implode on my psyche and it’s too much. Too heavy. Feels impossible. This all becomes elevated when you’re too weak to brush your damn teeth. Inevitably, I lose it.

So I have to slow my brain down. Do something to break up the hardened cement of reality in my brain. Sometimes I say some Hail Mary’s, just to interrupt the cycle of overwhelming thoughts. I remind myself, I don’t have to solve every problem in this moment. In fact, that’s not even possible. 

I lift my weary head, and make the next move. This is where having a dog is truly therapeutic. Just going outside and throwing a ball for Monty can help dry up my mind when it’s under water like that. Sometimes it’s just a few steps to the sink to wipe my face. Other times to a book, or sudoku, or funny videos of animals or people falling down. Yesterday it was yelling at Covidiots on Instagram. Real helpful for everyone! Or I reach out for help when I can’t do it on my own. And I’m lucky as anything I have help to reach for.

As I was doing this the other night, (trying to calm my spinning brain) (and crying) I saw Eckhart Tolle on my nightstand. I remembered he would say that’s all there is anyway—this one breath, this very moment. I was stuck, anxiety-ridden, about a future I feared but didn’t exist yet. I opened up to a bookmarked page that said this:

There is always only this one step, and you give it your fullest attention. This doesn’t mean you don’t know where you’re going, it just means this step is primary, the destination secondary. 

Admittedly, I have no idea where I’m going, or how I’ll get there. But I know the only accessible piece of life is right now; the only place we have any power. So maybe all of this is just a supersized lesson in expanding my consciousness! Just great. But sometimes I think I could go on less conscious and that would be fine too. God? That would be fine.

Keep moving Mary. That’s what I tell myself. Even in the depths of despair or discouragement, I try to remember that I’ve been through insanely hard times before (Basically the whole year of 2006 comes to mind) and I can do it again. I remember that others have endured way more than me and emerged. I have to believe that all of this will unfold into something larger, better, and something that makes sense.

Most of all, I try to reassure myself that no matter how painful or difficult things may become, they’re still possible somehow. Frequently solutions arise I couldn’t have planned on or thought of. That’s the beauty of having been through such painful times in the past. They don’t become easier, you just know, by some means, you’ll find a way through this one too.

I mean that or you die–either way. JK. Do I have to keep saying JK? Probably not. 

Just keep moving forward. Every night before bed, I hug my mom goodnight, then Monty and I clunk down the stairs to my room and I think Another day down, we made it. One more shit-show crossed off the calendar with a Red X. It’s very hard to stay “present” during a time when there are so many unknowns. I realize we’re all facing our own personal uncertainties, anxieties and issues right now, within this larger…catastrophe. Yet all we can take is one step at a time.  

For me the quarantine hasn’t been so rough, because I’ve been living what feels like a quarantined life for a long time now. I’m a pro! Being stuck at home is nothing new for me (or most chronically ill people) except now I’m in a different state, and I live in my parents basement and there’s a lot more hand-washing. I realize just how excessively pathetic that sounds, and that’s because it is. But it’s also kind of funny, I think.   

LIVE! From My Parents Basement! That’s a show I plan on ‘producing’ soon. Soon, soon…

Anyway, it’s taken too long to write this. And there’s still so much more to say and catch up on. Stories about the move and the ridiculous drive Matt and I made here and quarantining with my 90-year old grandma! All in due time. There’s plenty of it, and we’ll get there. 

Besides, I know who you’re most curious about anyway. And I can assure you, he seems to be adjusting just fine…

Hang tough yall. We may all be in different kinds of hardship soup right now, but we are in it together. 

Health, Happiness, Humanity  

*P.S. I dedicate this to my mom, my hero, a little late for Mothers Day, who has seen me through some of my toughest moments and hardest days lately. (Weak gift, I realize) You are a rock, and I know we’ll make it through this the way we’ve made it through everything else– One shit show at a time. Thank you for making me shower. Thank you for everything. Love you a LOT.

2020 Hear Me Roar! Or Meow, Just Depending on Things

Even if the Holidays are officially over, (although Mardi Gras is just around the corner) there’s nothing like the mood set by a lit Christmas tree in a dim living room. Monty is sleeping beneath it, his long breaths almost in sync with the fade on-off feature of the lights–it all sets quite a scene. Like a Norman Rockwell painting in here.

what.

There’s something about quiet nights like this—just the dog, me, and the glow of the tree, that I feel I’ll remember for a long time to come. Maybe it’s this hidden fear that it’s all about to change, which is true, it is. You always end up missing the ordinary things.

I’m trying to ignore this headache and concentrate on the smell of the fern. It’s not really working, the headache tends to win out a lot. But I’m enjoying the atmosphere  nonetheless. This has been quite the Giving Tree. I only watered it once!

I say it every year, I know, but the Holidays still thrill me because people do nice things for no other reason than “Hey, it’s Christmas” and it’s always been one of my favorite things, ever. I’d been attempting to get a Christmas tree since Thanksgiving weekend but my health wouldn’t cooperate. Two weeks before Christmas my stepdad Marc showed up out of the blue at 2 pm, knocked and swung open the door jokingly singing some Christmas tune. He had a 10 footer in his truck just for me. What a gesture!

I named her Carol and we put her in the corner and she has been a real treasure. It was all the gift I needed really. Kidding—it’s about having family and friends to share Carol with, and having them here was great. Of course, it came at great risk.

A week before my brother and his family of five in tow were to arrive, their oldest came down with a stomach bug. Then the youngest. And on and on. One by one, each day, another would vomit. Another bit the dust. My mom and I would dart our eyes back and forth with news of the next man down, calculating their arrival date in our heads. Then on Friday, my brother Nick finally succumbed to it–they were arriving Monday. The ominous question no one wanted to entertain entered the conversation. Was one dang Holiday worth the rest of us barfing all night? Of course it was! It’s Christmas for Gosh sake!

Who could do without these cotton headed ninny muggins?

We justified it. We convinced ourselves. No, they wouldn’t be contagious by Monday. Couldn’t be. We’d wash our hands. We’d drink hand sanitizer and bathe in vinegar. Many people convinced me with enough handwashing we’d be in the clear. My mom was more skeptical, but eventually she said a bit defeated What can ya do? If we get it, we get it.

Well, at 1:30 am on December 28th, we got it. Or, I got it. Snuck right up on me. I puked so much tinsel I thought I’d puke again. And I did! It wasn’t tinsel, it was kale, I just thought tinsel painted a more festive image. I cursed Christmas, just for a moment, but then thought eh, what the heck. They’re worth it.

They make it fun.

Luckily the same fam who gave it to me, took care of me just as well. I thought Jeesh, being sick is so much easier with people around! That thing knocked me out. Since everyone left three days ago, I’ve spent every day in bed with a weighted exhaustion and deep ache in my bones. BUT, today was the first day I woke up migraine free and my old lady bones had calmed down at least a little. Progress!

I was thinking how it’s difficult to be in a position of needing help. Chronically that is. A stomach bug leaves, but this chronic illness stuff, it will ware you and your loved ones out. The idea of being a burden is a constant fear I fight. It’s so reassuring to know  your own autonomy and be able to rely on yourself. Losing those capabilities through illness is hard to know what to do with. Asking for and accepting help was more difficult than I expected, especially when you were once so independent. One of the tougher lessons in all of this, I think. But, it becomes easier when you stop resisting it. What you resist, persists, as they say.

Once you start to release the idea of your self that doesn’t quite exist (healthy, reliable), you ease into the reality of being just the human you are. (A wasteland) The best way to handle this is with humility and gratitude. No one likes to help an ungrateful pain in the ass. But someone who is aware of what they require, can reach out for it with grace and acknowledge those who help them with humbleness, is more likely to receive kindness. People are more apt to tolerate and even enjoy your pain in the assness. That’s where being sick surprises me. It can bring out incredible things and open the door for doing good– not just in yourself but in others too.

Speaking of doing good, I wanted to end on a note about advocacy. Namely, what an absent advocate I’ve been this last year. I was sort of on a role, going to D.C., circulating the petition, begging for signatures like a desperate vacuum-cleaner salesmen. Do those still exist? Sending thousands of pages of names and stories to the NIH. Then what?

Besides spending the first three quarters of 2019 in the physical state of a trashcan lit on fire, it was more than a lack of physical health. I lost my footing. You have to find a very particular headspace with ME advocacy, and I sort of lost myself.  I became discouraged at the federal responses, the intolerably slow pace of things, and increasingly saddened hearing the repeated stories of such insanely debilitated people being dismissed, doubted, and deserted by the medical world. Shamefully I admit, it was just easier not to fight. At times I thought What am I doing? Is this going to achieve anything?

You can’t unring the bell, is the thing. Once you see how bad it is, how desperate this situation is, it feels negligent not to fight to try and change it. There are no guarantees in advocacy. But like always, I know inside it’s better to try. Maybe it won’t make a difference today, but our collective efforts are going to change things eventually. All a matter of when.

In the meantime, the fight is infuriating. You have to remain hopeful despite receiving responses from the NIH, like the one below, that tried very hard to list all the ways they were getting serious about MECFS, and even included a Press Release from 2015 to prove they meant business! Effectively their letter said this: We. Still. Don’t. Get It! Orrr, maybe they do get it, in which case their letter said this: We. Still. Don’t. Care! But thanks for writing us, and sending that cute box, haha! What a crock. You can (click) and read the letter below, or someone can make a fart sound and that would effectively be the same thing.

This letter can suck it.

Best be summed up

With a fart sound.

Their response wasn’t infuriating because it didn’t include a promise to immediately allocate $100 million bucks. (Although, that really would help us out GUYS) It was immensely tonedeaf but most of all it just didn’t hold true. I read the words over and over, grasping at vague promises and past “efforts” trying to convince me that they really do care. OK, great. But you can’t just take their word for it, so when you do your due diligence and learn things like NIH funding dropped 25% since 2017 for MECFS research— it’s easy to think OH What in the name of SAM HILL HELL ARE YALL THINKING? Ahem, excuse me. Like I was saying, proper headspace.

So, you get it. It’s tough. But the work is too important. I’ve seen what this disease has done to countless strangers, I’ve lived what it’s done to me, and I continue to watch what it’s done to my mom and most recently my sister. I just wanted to remind myself here at the beginning of the new year, and the twelve or so readers, that this fight is desperately still in need of all our help. It’s absolutely clear the NIH won’t act without a lot of outside pressure and heat and noise; I believe we can bring it.

I’ll do my best to stick with it and continue to try and be creative and positive throughout this fight. As always, I’m open to ideas! The petition is still live and well, but I’ll work on new ideas of how best to work with it.

Being shown and gifted so much kindness in my life, I think the best possible way I can pay it forward is to remain dedicated to this campaign, regardless of how little I think it may matter on one day or hopeless I may momentarily feel. At heart I believe the change we seek is possible. And Monty does too.

Health, Happiness, and the Roaring 2020’s

The In-Between

I’ve been writing at my typewriter way too long. Something about that bright red device with such mechanical three-dimensional features allures me to the window. It also helps that it produces something tangible at the end. Something I can read and underline and scratch out afterward. But it’s made me abandon my place over here! I’m pretending you care. At any rate…

It’s the mooooooost wonderful tiiiiiiiiime of the yeeeeeeear. I sing that around my house when I get a burst of energy. It makes Monty all feisty.

Christmas, finally! No wait, this year flew by. I think. Yeah, it did. It’s funny how most conversations are like “Something about time.” “Yeah, and something else about time!” “Not to mention the weather…” “Oh yeah, and the WEATHER!” Weather and Time, making conversations since the beginning of…well you KNOW!

Today my friend Matt and I are going to get a Christmas tree. And Monty too, if we can fit him in the trunk. Whoa, I meant to write truck. He’d never fit in the trunk. Anyway it’s really not a great Christmas-getting-tree day. It’s warm and soupy outside.

I should try and embrace it. I don’t think Colorado sees humid, soupy days in December.

Meantime I’m prepping myself for Christmas week. I so forward to this week where most the family reunites and we cram as much doing and going and seeing and visiting into one week and make a bunch of magical memories. Then at the end of the week everyone goes home and back to life as usual and I’m left with a body that feels like it’s been bulldozed for the next three months, at least. Sometimes I fear I’m becoming a human Kathy cartoon.

Ew.

The point is, I know there’s a better middle ground where I can plant my feet. The problem is it involves more saying no. Saying no means missing out, and missing out is really depressing when your family is finally in town but an arms length away. I’m the youngest, so I especially never want to miss out. It comes with the territory.

I think when you’re sick this long you forget what this need to Go and see and do and lunch and dinner and friends! and the zoo! and the park! what’s next?Let’s go!What’s next?Let’s go!– feels like. Wait no, that’s wrong. You do remember the feeling, psychologically–you still have it in fact. You just can’t deliver on it and you haven’t in a long time. That pace of life becomes slowly unfamiliar. And unsustainable. Suddenly you’re surrounded by people who wake up in the morning and put on their pants and go and go and go, and it’s a stunning reminder of what physical health allows. But you just can’t go at that pace, at least not very long. And not without paying.

As a person so physically limited, I live in a fantasy-land where everyone meets up and says “Hey do yall want to just hang around here and play cards and watch movies and throw the ball for that dog who we all love and adore so much and also discuss and agree about the direction the world is taking? Sounds good, I’ll get the hot chocolate going. Elf starts in ten.”

NEVER

GETS

OLD

A fantasy, of course. Healthy people want to go and see and do, and they should be allowed to do as they want and not feel like they’re leaving a soldier behind. But it’s just tough when you have sick family members and big groups of people. Each person needs what they need, and we have to learn to compromise where we can. The truth is, well, it sucks. I want to be able to do all of it. But then nobody, really, can do it all.

Ah wonderful, now it’s raining. Real great Louisiana! Wait, last Louisiana Christmas for a good while. Soak it in. Soak all that soupiness in. One moment, I need to turn the AC on.

It always helps me to break up the time I have with my family around Christmas into really small pieces. I try to recognize the specialness of moments (within the moment) and almost freeze-dry them in my head. Take a detailed note of everything and put them in my pocket for later. I have a few of those “nuggets” in my mind from the past that I’ll always hold onto. But it’s not easy. I’m constantly fighting between what the heart wants and what my crap body can handle.

Sometimes we concentrate too hard on making big plans and doing big things, one thing followed by the next and the next. We could probably stand to slow down and smell the poinsettias now and then. But too, it’s nice remembering some of the best parts are in the prepping of the big thing, or the resting afterward, or story time before bed. All the little in-betweens.

Since I can’t keep up with it all, as my body proves to me year after year, I will try and be highly awake for all the smaller, do-nothing moments. Take little snapshots along the way of enjoyable times, even the quick ones, give them a name and collect them like pebbles. It helps to write, of course. Then when your memory fails you, you can read a list of the happy moments you had. It’s about the little things, so they say, so it helps to capture and really treasure those as much as you do the big ones. You don’t always have to make it to the zoo to make a memory that lasts.

Then again, going to the zoo is really freaking fun.

What do I know? I’m still working this out. But it’s on my to-do list this year: Keep it simple. Let people do what they want. Enjoy the time I have with whoever’s around me. It’s obvious and yet, none of these things are done easily in practice. I challenge us all.

You know last year it was my goal to write shorter blogs but more frequently? I totally failed! That’s the nice thing about years, a *new year* always shows up. But usually I’m too weak to move by then. KATHY CARTOON! Ack!

Health, Happiness, Keeping up

 

Woah Is Me

The setting is a little funny right now. I’m outside on the porch swing, it’s only 6:30 but very dark. It’s warm and damp, on the cusp of a light drizzle. It might as well be July. Monty insisted we come out of course, without a care that it’s almost completely dark or mosquitoey or that it’s now in fact raining. The dog is such a happy distraction. My head is pounding. 

I’m tired of even saying that or thinking about it, but it’s hard to escape. A change of setting always helps, at least psychologically. But Monty helps the most. He cracks me up. He’s playing fetch with an old sock right now. Really. The dog will retrieve anything. 

I remember once when he was a puppy, we lived in these stupid college apartments, and we played fetch with a rock in a concrete parking lot. I remember thinking My God, the idea of this is so depressing. And yet there was Monty, flopping and running back and forth, proudly prancing after he’d pick up the golf-ball sized rock and spit it out to bounce back to me. Monty turned 12 last month. 12! He doesn’t look or act that age at all. You should see him fetching this sock. We might as well be back in that barren cement lot.

Time to go in Monty. Time to ice my head and wait for things to calm down up there. It’s like a storm is brewing in my brain, just like the real one setting in outside. It will rain tonight and be freezing tomorrow. All the small talk will change from how miserably hot it is to how insanely cold. 

***

It happened just like they said. Winter showed up overnight. Monty doesn’t seem to mind at all. My head was pounding when I woke up and I didn’t want to move. 

I’m not in great form today. This happens sometimes. I’m already missing the scenery here. What I see out each window. I’m already missing Monty. I know it’s stupid to think that way and I try not to entertain those types of thoughts for long. But it’s hard to pretend otherwise. I’m just afraid of the changes I know are coming. I am very afraid of moving. 

I’ve been in a sort of denial about it, because I haven’t had reason to face it head on yet. And when you’re in physical pain, you don’t really have the capacity to think so far ahead anyway. That can be a good thing. But the times when the reality of it does seep in, I feel so overwhelmed I can hardly move. They say pain stems from spending too much time in the past or too much in the future. It makes perfect sense, but alas, I am imperfect. I already know how certain things will hurt. I’ve been through them before.

We haven’t even sold the house(s) yet, but I know we soon will. For what could’ve been an easily “tragic situation”, this all turned out OK. No, I never planned on living in my parents pool house and wouldn’t have chosen it. And yet it turned out to be ideal, given the reality. Help is 15 steps away, as is my independence and autonomy. Monty and I have really grown up here, a second childhood of sorts. Adjusting to a new normal—a lack of health— has meant learning to be soft where I used to be stubborn. You just don’t have the energy to fight against things, to be so particular. And the relief comes in realizing 95% of the things you fought and fussed over were useless—petty or temporary or out of your control anyway. It’s been a hard but good and practical lesson. It can only go two ways when you lose physical reliability. 

Monty is the master adjuster. All 12 years he’s wagged his tail and followed wherever we were to go. Whatever he does he plunges into with openness and playfulness and I need to lean in to this kind of thinking. But fear takes me over at the idea of upcoming change. It’s not just one thing, like the fear of what will be. What could be. It’s all this I’ll have to leave behind, too.

Even the painful parts. This house is so filled with receipts of life and pain and revelation and hope. It’s strange that even leaving something painful behind is painful itself.  

When I think of the fact that we are moving back into the house I grew up in, in the town I grew up in and hated at the time, I feel sick. But that’s putting it all pretty crudely, isn’t it? As I’ve learned over and over, it’s crucial that we write the story and not allow a fleeting feeling like fear to take over the script. It’s all in how you frame things, I know it. And of course I can do a better job than reduced, negative summaries like that. It’s almost tragically hilarious, which seems to be the theme of my life. I’m 35 and moving North into my parents basement! Who could write this stuff? 

I know, I know. I am lucky for so many reasons. I could always stay behind and see what living alone without any help from my parents would be like—then I’d see! Maybe I wouldn’t complain about moving once I saw how terribly worse this could all be. I’m fortunate to belong to a family who cares. To have family/friends who care one way or another. But I think that’s where the deeper sadness stems from here; The lack of choice that naturally exists from a lack of health. 

You really can’t complain when so many people are helping you. And as backwards as it is, sometimes you resent the help. Resent needing the help. You’re so grateful it makes you cry, and yet you’re tired of saying thank you. This is a feeling, not the truth, and I know the difference. Gratitude has saved me over and over. Maybe I shouldn’t give these feelings a voice. But they’re there, like a lump in my throat, and I thought maybe writing out the fear would help disempower it a bit.

I fantasize all the time about being on the other end of this. Of being the healthy person offering the sick person (or anyone) my home, my energy, my ability, my ear. I’ve played out multiple versions of a possible future. I am wearing coherent, trendy outfits in all of them, and my house is very clean. But who knows what the real one holds. Maybe I end up a success in dirty PJ’S?

I don’t mean to be whiny, I’m not so sure why this premature nostalgia and angst is hitting me hard today. I guess life catches up with all of us now and then. It’s OK to cry about it, although it makes my stupid pounding head worse. I should take it as a sign I’ve cried enough. I called Monty over and he yawned. Real nice Monty! 

Sniff sniff, wipe wipe. 

Tomorrow I see the neurosurgeon. We’re trying to find out if I have CCI, Stenosis, or other structural issues in my cranio-cervical junction. I have no idea what’s wrong, only that I probably shouldn’t be in so much pain all the time or have to take migraine medicine as much as I do and the idea that having an ice pack glued to my head has become normal is just absurd. We have entered the absurd, people! So, maybe we’ll find out something more tomorrow. I have zero expectations, as I tell most doctors I feel like I’m dying and they then tell me that my lab work reveals I’m the specimen of health! Perfect, if only I felt that way.

I don’t want to get my hopes up but then, why not let her fly? If nothing comes from tomorrow I’ll not really have lost anything. Just another box checked. In it’s own way, that’s progress. I think. I don’t know, my head is throbbing and my thinking is starting to fragment again.

Maybe tomorrow will be the start of change that I’ve been fearing but will actually mark the start of something new and great. We’re crazy to ever think we know how it will all unfold. I only know that hot or cold, New Orleans or Colorado, Monty is happy to be alive and play–with a sock or a rock. And that kind of adaptability is something I strive for. Oh Monty, will you ever know how insane and complete my love for you is? I hope.

Wish me luck.

Health, Happiness, I’m Not Crying You’re Crying

 

Turning It Off

We All Fall Down. The Stairs. Sometimes.

This all feels like some cosmic joke as I write this, but the sh*t show must go on. I wrote this piece intending to pay homage to the last month, which has marked an unexpected bump in my functionality. All due to a small but sufficient amount of useable energy I encountered, as if finding money in the street. Look energy! Pick it up! 

For nine months, this invisible life force–something you almost can’t really know you have until you lose it–has eluded me. And then, subtly and seemingly out of nowhere, it flipped on inside me like a light switch.

For the last month I’ve been hard at work on an important story about the opioid crisis; the data driving it, the policy, and the affect it’s having on millions of chronic pain patients. I’ve felt compelled to write it and share a side of the narrative that’s gone missing from the national conversation. The point is, I felt functional enough to devote myself to this article in a serious way. Almost every day for two weeks week, I put on real pants and drove to the downtown coffee shop, the one with terrible art work on the walls and unforgivable price tags, where I’d work for hours at a time. Most of you know 2019 has been a garbage pail of health issues, not really allowing exertion like that on my part.

The joke is, I’m trying to write a piece on how great I’ve felt, in one domain anyway, and I am continuously interrupted by how terrible I feel due to one of the more severe migraine cycles I’ve had all year. Also the ice pack strapped around my head keeps dripping water in my eye. Just great.

Despite the newfound strength I came into, my physical symptoms persisted. Migraines, face pain, POTS, cystitis, the badder disaster–all alive and well. The catch? Having this new, albeit small and yes, limited, amount of energy on board has been a game changer in terms of dealing with all the pieces that go into life with chronic illness and pain.

Finally room opened up in my brain and body for a resilience to deal with the symptoms  proactively, or distract myself from them (insofar as possible), or just enjoy the rare freedom you feel when you finally have a choice in how you’ll spend even 1/3rd of your day.

The relief it’s brought has left me in tears of gratitude. Not a relief of pain, but of burden, of carrying this heavy, physical weight around for so long. And finally taking it off.

It feels almost impossible to convey how much more tolerable the experience became,  finally having some amount of energy inside to help take it all on. It’s still a difficult and daily battle, but when you suddenly don’t feel the active force of gravity working against your every move, well, that helps.

What doesn’t help? Falling down a flight of stairs at your cousin Kenny’s house, the night before his moms funeral. Wait maybe that’s the joke. You know, this story is just so Gelpi.

Dammit.

As you can see by his face

So, maybe my month of reliable energy has begun to wind down. I’ll go out on a limb and say that becoming entangled with an industrialized fan on the steep fall down the stairs and breaking that fan with my face at the bottom, did not help. I had grill marks on my face people! Like some piece of George Foreman meat! Good Lord.

The point in all this was to pay homage to feeling GOOD, and the things you get to do when you’re not stuck in a dark HOLE. And so it shall remain. I’ll tell the Tumble-Down-Kenny’s-Basement-Stairs story soon, I swear it. I’d never hide such comedy gold.

It doesn’t easily escape my mind how bad one day in August was, just two months ago. I couldn’t lift my arms above my head, the weakness and heaviness and dizziness were relentless. My entire head throbbed with pressure, and I felt a total desperation wrap itself around me, barely able to keep my eyes open laying on the couch. I feared the physical feeling of that day would never end. And then less than two months later, I end up here…

Some friendly competition, ahem

Fourth Quarter Photo Op

The Blue Demise of Miles…

So loud, out like a light

Attending a Saints game with family and friends, yelling in the Dome to throw the Cowboys offsides, and most importantly, enjoying the hell out of myself. How could such a transformation occur in such a short time?

I can’t know. I stopped taking one of my anti-vitals. My mom prayed a novena for me after an especially bad few weeks. I pray my Hail Mary’s every morning, waiting for my head to calm down. All I know is the very terrible day in August did end, and for a while at least, I’ve been gifted with enough energy to participate in my own life. I’ve paid a price for things, but at least I did something to pay for. Most of 2019 has felt like a constant hangover without a sip of alcohol.

I just want to remind anyone who’s sick and in a crash or experiencing a rough patch to hang on. I know how desperate and forgotten and isolated it feels. How insufferably long the time can take to pass. (Trust me, this is the first time in 9 months I’ve had some level of functionality) The truth is we just can’t know the future. But given a chance to play out, turning (inward) as a spectator to our lives when we can’t participate in it firsthand, it will usually reveal some incredible grain of truth that will make life sweeter, easier, and closer to whole. At the very least, it will make us hugely grateful for the tiniest of things–and it’s hard to be unhappy when you harness true gratitude from within.

So what does the letup of a nine-month crash finally allow for? Well, really dumb but fun stuff that makes me happy. Like a few weeks ago when I gave Monty a bath. We came inside and I brushed him while watching college football. I noticed the little pile of hair was becoming pretty dense and also that it seemed it could be arranged, as if I worked at it, I could shape it into a smaller, furry replica of Monty. So that’s what I did…

“Won’t my mommy be so proud of meeeee!”

And YEAH, I’m proud of my work, mkay? It took some real finessing. As you can see, the first few editions were not quite right.

A bit too wispy…

A bit too 1950’s mouse cartoon…

You can call this a waste of time and probably not be wrong. The thing is, when you’re feeling well enough to exert yourself in creative ways beyond just surviving, nothing feels like a waste. Things take on a new lightness and enjoyability. Even bathing the dog. Of course Monty was a wonderful and willing model. Speaking of which…

Monty’s good looks should have been earning us money ages ago. Thanks to the Aunt Becky scandal, I learned that “Instrgram Influencer” is a real thing and decided Monty needed to be one. We haven’t turned it into cash yet, but we do get a discount on merchandise from these brands that saw his picture and posted them on their pages. So yeah, we should be earning hundreds upon hundreds of dollars any day now.

Who. Dat!

This is what Monty thinks 23 hours a day.

Anyway, I’ve done more than make small, furry replicas of Monty and model him in bandanas. I finished The Snows of Kilimanjaro, which had me enamored for three days straight and I need more Hemingway to read. I’ve continued to work painfully slow on completing sudoku puzzles, as well do a lot of swimming because it’s October and 93 degrees and that’s just, you know, reality now.

Panting. In the Pool. In October.

In the end, yes, I fell down Cousin Kenny’s stairs. But you know, the fact that I was well enough to be at Kenny’s in the first place, and subsequently do acrobatics with a fan down his stairs–well, that says something. Something good, believe or not.

Here’s hoping the recovery isn’t so bad. I write this as much as a reminder to myself as to others, of how fleeting all this is. That idea used to frighten me, as though nothing were solid and reliable. But now I find it revealing of a truth that’s freeing, a relief. This was always temporary. Changes can come hard and fast, but looking with creative eyes and a depth of perception, we can often find that they’re in our favor. We have to stay awake though. Give life a chance to show you how things turn out. As the adage goes: In the end, it will all be OK. If it’s not OK then it’s not the end. Cheesy, yes, but I can be on board with the idea. So march on soldiers. As always, we will get there.

I’ll just take the elevator wherever we’re going.

Health, Happiness, and the Bruise on my Thigh Has Given Me Three Butts. Three.

Navigating Healthcare When You’re Chronically Sick *and a Chronic Pain Patient (1)

When I say the seven days of last week were the epitome of an absolute disaster of epic Murphy’s Law proportion, I’m not exaggerating. I am psychologically traumatized by the amount of roadblocks that emerged in just trying to carry out seemingly easy decisions the doctor and I agreed on.

It’s hard to convey how defeated it feels to be so desperately reliant on a health care system that appears to lack any incentive to see that you’re taken care of. Pull yourself up by your own bootstraps is a phrase I’ve heard all my life. There was a time when that was possible and I had no excuse not to be totally self sufficient. But that all changes when you lose the reliability of your body. It’s like trying to beat a video game with a broken controller in your hands. 

I feel trapped. Chained to a medical network where in every domain outside of actual face time with the doctor, I am a policy and not a patient. Whether I have access to what is necessary to maintain any health seems to have become almost anecdotal.

My time and energy are consumed by the position of full-time liaison, constantly navigating the logistics between the doctor, the doctors own front desk staff, the pharmacy, the insurance company, and adjusting to the perpetually changing federal laws that affect the dispensing of my medications. Maybe it’s this easy to fall because there are so many gaps between doctor and patient, and they’re widening all the time.

See? Here I am enjoying myself at the urologists office.

I can’t remember when this part of life with chronic illness became harder than managing the physical illness itself, but that’s where I am now. I’m also realistic and understand that in the context of a multi-systemic disease like M.E., a lot of my time will go to doctors and exams and bloodwork and prescription refills and pickups and insurance appeals etc. etc. etc. That’s simply part of life when you’re sick and I accept that part. (See photo)

What I struggle with is the fact that maintaining my healthcare has become a battle. Keeping up with the aforementioned aspects of my health between doctor appointments is a fight, as constant and reliable as the disease I wake to everyday. 

This probably all sounds generic and obvious to say; But I’m not actually referring to the conventional financial or accessibility issues of our system. I have health insurance. I’m not talking about having an inadequate plan or the absurd price of prescription drugs or the lack of access to good doctors. On the whole I have great doctors. So why, when it comes to that crucial part of fulfilling the medical plan that a doctor and I have decided is in the best interest of my health, am I met with constant resistance from the moment I step out of the exam room?

That resistance fought me at every turn, every day last week. Beginning Monday, the said battle of having my health needs met ensued due to simple administrative mistakes, systemic gaps, and changing federal laws that made shitteth hitteth the fanneth. I will share how the system tends to fail with the slightest pressure, but first I think it’s important to explain my current state of health and why I require the doctors, treatments, and care that I do.

I am writing about this not to pettily vent or point an ambiguous finger—believe me, I’d rather forget it ever happened. But last week was not a fluke. This happens constantly, and it will happen again. But if a chronically sick person with good health insurance and good doctors has to fight this hard and often lose when it comes to basic needs– like prescription refills and scheduling timely follow-up appointments– something is broken. Maybe by highlighting how laws, policies and medical personnel affect the health of an actual person, it may somehow in the end help fix or improve them. Maybe I’m dreaming.

**State of the Human**

Most are familiar with my physical circumstances. Quick status:  I’ve been fighting a chronic disease that lacks treatment or cure since I relapsed a decade ago. As a result of many things going awry in my body, I am in pain all the time. Without precise disease treatment, the best we can do is manage the many symptoms of M.E. In my case, fighting chronic pain is the hardest part.

In both legs I have something called small fiber neuropathy. This is a deep ache, basically everywhere there is skin, and typically a burning in my feet and calves, especially if I stand for more than 15 minutes. My feet often get physically hot and sometimes swell, as though I were some pregnant broad, but nope! All of this began around age 25, when the restless leg syndrome also worsened at the start of my relapse. It’s like an electrified current running up and down both legs that won’t turn off. 

Untreated, my legs ache and burn constantly, but worst of all, they make sleep impossible. At best it comes in one to two minute fits and bursts before the pain wakes me again. Imagine being pricked five times by a safety pin every 90 seconds throughout the night. You’re getting there…

Beyond my legs is my head. Or my brain I should say, because that’s where the pain feels like it’s emerging from. It’s as though my brain were swollen and pushing against my skull from the inside. It’s a chronic pressure and pain with very frequent migraines. Five years ago the pain moved into my face—not an acute pain, a widespread pressure pain like a tension headache, but beyond my forehead it extends to the top of my head, down to my cheeks, jaw, and even my mouth sometimes. On bad days it’s just my whole head.

Some other treatments have included steroid injections in my head and back of my occipital nerves, as well as lidocaine injections in my face to help control/ disrupt this pain.

See those little bee stings? Those are injection sites. Is it fun getting shots into my temples and face? No. But neither is 24/7 pain, so a few seconds of needle pain is nothing in comparison.

Perhaps underscoring my head pain are the issues with my neck. I’ve had a “bad neck” the way a seventy-five-year-old has a “bad back” since high school. There’s a good chance some of these neck issues are driving the head and face problem, but we’ve not been able to land on anything definitive. Trust me, we’ve tried, and we will continue to. We’ve spent years and years searching for answers, visiting doctors, & trying a lot of techniques—from chiropractors to physical therapy to acupuncture/cupping to two weeks of ketamine infusions (That’s a story I’ll tell soon because…Damn.) 

Lastly I’m dealing with chronic interstitial cystitis pain that resurfaced in December with an infection. We treated and “cured” that with antibiotics, but the pain and symptoms of IC decided to stay. In July those symptoms worsened drastically and have added to my pain load. I am hoping and praying and trying a lot of remedies (including homeopathy) to get the IC under control, but it’s not been easy. I didn’t know it was possible to pee more than 30 times a day but guess what? I think I hit 40 once.

We recently had my MRI’s looked at by an M.E. literate 3rd party who pointed out abnormalities on my brain stem and cervical spine. One included a minor CSF blockage and bursitis on five disks. These structural issues would likely explain a lot of my pain problems and may even be responsible for other symptoms like those from dysautonomia.

Some of these abnormalities can be fixed with surgery, but I have to see a specialist who would decide ultimately the best course of treatment. If it meant the possibility of an end or improvement of this pain, I’d go under the knife tomorrow. I’m ready for my life to start in so many ways, and I do believe we will find an answer to all of this. In the meantime…

Due to this constant high level of pain, I see a specialist and take prescription pain medicine, as well as undergo nerve blocks, trigger point injections, and live with an ice pack on my head to help find relief. This combination of treatments help keep my high level of pain down to a more manageable one so I can have some quality of life. I have not changed the medicine in eight years or the dose in more than four. Want to see what I look like after a nerve block?

Sexy….

Right?

Creepy, I know.

I’ve provided my situation regarding pain because this is where most people have a strong opinion one way or another, and more often it’s that you’re just being weak, don’t really need it, or you’re treated like an addict. Often that attitude comes from front desk staff or a pharm tech filling my Rx! I wish this perception would change and that people understood there are millions like me; prescribed to this medicine for the reason it was created: to alleviate physical pain. We take it as prescribed and there’s no misuse. It’s a matter of livelihood. That’s. All.

Having to rely on medicine to evade my natural state of pain is not something I’m happy about or proud of. I’m also aware it’s not a ‘solution.’ But I do know my life would be unequivocally crappier and less functional if I had to face the world fighting such a high level of pain 24/7.

For that reason, I’m grateful for my doctor and for medicine that provides some relief. Until science catches up with understanding my disease and treating it, this allows me not to be tortured at all times. I don’t think that’s anything we should have to feel shame about.

There, now you’re caught up…on one part of the battle ;) More on last weeks clusterbiff and how to prevent it, coming up.

Health, Happiness, & a 10 on the Pain Scale

 

Summer Part 1: The Bill Always Comes

**The Summer of The Winter of Our Discontent**

There’s this key moment in Sudoku, when you find a clutch number that gives way to the others and begin to just fall into place like a waterfall. Much like the card you play in solitaire where you know you’re about to crack it. I had just written in a 6 I’d been trying to find for way too long. So began the waterfall, and I filled in the other boxes proudly– possibly smugly because this puzzle felt like it was out to trick me personally and now I had it in my hands! Until I didn’t, and in slow motion realized I had two number 7’s in the bottom row, and I just wanted to hit myself.

I tried to work backwards to fix it, but it was irreparably blown. I blew it. So, there went the last two weeks.

Somewhat of a Doodler 

Of course, I’ve been up to other things. It’d be funny if after a month break all I had to show for it was a failed puzzle. Can’t all be winners.

For starters, summer reading. In July I was booklets after finishing Killing Commendatore, and sad I didn’t have more Murikami to lose myself in. Finally I scanned my own bookshelf for unread potential treasures and picked up Steinbeck’s The Winter of Our Discontent, which doesn’t sound like much of an apropos Summer read, but it’s just that. It’d sat idle on my shelf for years, even though that white house on the cover had caught my eye a thousand times. I had no idea the brilliance I was missing! It’s like suddenly realizing an old painting in your closet is worth some absurd amount of money. Once I dove in I didn’t want out, which surprised me when it shouldn’t have. It’s a classic, what did I expect?

The book was written in 1961, and given the passage of time I expected a natural  disconnect. I’ve been so wrapped up in modern fiction– for too long probably. Yet somehow the America and the People and Assumed Human Decency that Steinbeck depicted 60 years ago were all completely recognizable today. You wouldn’t have to drive long before finding a sister town to “New Baytown”or look very hard before confronting modern replicas of his primary characters. Ultimately he tapped into the problems, desires, personal demons and moral choices most all of us face at some point– it’s just astounding to me that Steinbeck unearthed such deep, quiet struggles and could discern which ones were engrained in us and would stand the test of time.

Maybe that’s a litmus test for what makes a book a classic; if the suppositions and ideas can weather the decades and remain solidly true, unbothered by time, then you’ve got yourself a winner. I guess that’s pretty obvious, but it felt remarkable to come across.

The book reads a lot like a memoir of protagonist Ethan Crawley, who is so likable, in the first place, it’s hard to put down. I felt a relief knowing there was someone else who felt these ways –about money and politics and social hierarchies and expectations. He makes a joke out of probably 85% of his replies, and rarely does anyone get it, or choose to acknowledge it with a laugh anyway. That felt… familiar.

I feel similarly when I watch SNL sketches that crack me up. It’s not in the scene itself, but in the imagining of the writers who wrote the sketch, and knowing that real people out there recognized absurdity the way that I do. It’s easy not to feel seen in the world, but knowing other people see things the same way you do, even perfect strangers, feels like the twin brother to feeling understood. One scene in the book hammered this feeling in…

Crawley and his wife have been invited to another couples house to discuss “business”, i.e. money, but they have to go through the obligatory song and dance first.  That means a formal serving of tea and then petty small talk. Everyone sipped tea and each delivered some anecdote on the subject of tea. He’s bored to tears. When it became Ethan’s turn to chime in, he brought up Danny, the town drunk, and a terrible nightmare he’d had about him. I laughed as he described feeling his wife’s quiet anger that he didn’t keep up the supposedly pleasant tea talk, and now everyone had to comment about a despairing subject. I wonder how many pleasant bouts of small talk I’ve Debbie Downer’ed with an some morbid comment that I found funny? Probably too many. Anyway, it’s a perfect scene.

A few of my favorite passages:

“So many old and lovely things are stored in the worlds attic, because we don’t want them around us and we don’t dare throw them out.”

I don’t suppose there’s a man in the world who doesn’t love to give advice.”

(Ethan)”Is Marullo part of the group?”

(Wealthy friend) “Certainly not. He goes his own way with his own crowd.” (The Italians. Marullo is an immigrant)

(Ethan)“They do pretty well, don’t they?”

(Friend) “Better than I think is healthy. I don’t like to see these foreigners creeping in.”

Sounds familiar eh?

“There is no such thing as just enough money. Only two measures: No Money and Not Enough Money.”

“No one wants advice–only corroboration.”

“I always put it down to fact that a wife never likes her husband’s boss or his secretary.” “All men are moral. Only their neighbors are not.” “Not only the brave get killed, but the brave have a better chance at it.” “For the most part people are not curious, except about themselves.”

I must have underlined half the book.

Next I read Hemingways The Sun Also Rises, another of the greats that’d been collecting dust not far from Steinbeck. When finishing it I wondered why I haven’t read more of the classics, because this was a damn great book too. There’s no good reason I don’t have more of them under my belt, except that I didn’t take enough literature classes in college I guess, and I hardly know what the real classics are. So, I’ve begun a list. Who cares. Anyway I won’t go so far into this one. As tribute to Hemingway and his distinguished, succinct style I’ll say this: The book is rather great and you should read it. You’ll have a swell time. 

 

Especially if you love Paris, Spain, the Pamplona Fiesta, fishing, Bullfighting, and forbidden love. Hemingway was clearly a romantic. Did you know he was married four times? Only a true romantic gives marriage that many goes. 

The passage that stuck:

“I had been getting something for nothing. That only delayed the presentation of the bill. The bill always came. That was one of the swell things you could count on. …You paid some way for everything that was any good.”

If that’s not the truth I don’t know what is.

I kept thinking about it’s application to health. That very often, when you have your health, it’s free. They say your health is like your breath–you don’t pay attention to it until you lose it. I think back on life before the relapse, and how I’d done nothing to earn my state of ‘decent’ state of health. I’d also done nothing to earn the relapse that eventually followed. It felt like someone at my door, come to collect a bill every day, when I hadn’t purchased anything. When well, I was getting something for nothing, without even knowing it. Once sick I had to begin paying for those somethings, and surrender what I couldn’t afford.

My hope, and I think my belief, is that it doesn’t have to mean the surrender of those things that matter most. When you’re forced to give things up, it feels just that way. But learning to live without them has been an ongoing lesson in letting go of what I thought I needed in order to live a life I liked. You end up finding a whole other you behind those old roles. It offered a strange opportunity to see my own self without these external identifiers. That allowed me to see the world differently too. I’m (still) learning it’s up to me, more often than not, how I choose to see both.

But, as the man said, you paid for anything that was any good. Many things that allow me to feel alive and good come at a cost. It’s like a tax on fun, in the currency of health. Actually I also pay the tax when I haven’t had fun. REAL COOL BODY THANKS. At any rate, I feel fortunate I still have people and places and experiences to (sometimes) overindulge in at all.

 

Like him. He’s worth it.

I imagine everyone has their respective “things” or indulgences for which a bill reliably comes. And maybe depending on what point we’re asked, during the playing or the paying, would we consider whether or not the juice was worth the squeeze. For me, mostly, paying the bill feels worth it when I’ve decided to splurge. Girls gotta live sometimes.

Health, Happiness, Paying the Tab

An Extremely Obvious Revelation

Captains Log: Day Four Million and Six. Still crashed, I guess. At what point do you stop considering yourself crashed and just accept that this new garbage state is just.…your new normal? Everything is acting up, like normal. But it’s been the challenge with my heart, wanting something it cannot have, which I’ve struggled hardest with. I don’t typically spend too much time in the “greener grass over the fence” world,  but something in me is willing hard for a life I don’t have. It’s also being imaginatively precise in the world it wants that cannot exist.

I’m in a rut, if that wasn’t clear. 

I’m reflecting on how it all began. I can at least say what helped inspire it: Ignoring what I knew I needed to do, which is one of those human behaviors I will never understand. My morale was low, which was linked to my motivation. It was still there, but it dissipated a little every day I went  on deflecting from the thing that would do me some good: writing. It was like a shooting star that burst in a short lived flash of light. But it would fade just as quickly if I didn’t act while it was illuminated. Then the sky would go back to black, and having failed to act, the brightness dwindled, as did the likelihood of me writing all the things pleading to be let out. 

That’s why they say strike while the iron’s hot, I suppose. Again and again and again I’d have the spark and ignore it. Or put it off. Or write in my notebook, which is something better than nothing, but I knew it’d little good there. It didn’t risk anything or challenge me in a way that makes me try harder whether the quality is better or not. Saying “tomorrow is just as good as today” became a dangerous motto I obeyed and it’s not even true. I was kidding myself and knew it inside, but I still couldn’t pull it together. 

Instead I worked on three sudoku puzzles from a Southwest magazine I snagged on my flight home from Miami. I made some dumb deal with myself if I could finish all three than I could trust my brain. I finished the Easy, then worked on the Medium for what probably took far too long, but finished, and then spent over a week on the Difficult until I messed up somewhere and it was impossible to fix. So I threw it out finally, assuming OK, now it’s time for writing. But then I studied Sudoku strategies online instead, which I’d never done before. Interesting stuff.

I went to Miami in the first place to see my real life hero, Dr. Nancy Klimas. I honestly feel little a star struck when I see her and I just want to run up and wrap my arms around her bear hug style and lift her off the ground. Do a twirl with her raised in the air! Hah, what a sight. She ordered a lot of blood work and neurotransmitter tests. One interesting thing she suggested was the use of a tens machine as means to stimulate the Vagus Nerve, which has gotten a lot of press in the MECFS world and has helped people with varying symptoms. One of those is headaches, and since I’ve had one of those for the last decade, I’m really hoping it will help provide some relief. 3 times a day for 15 minutes. I’ll report back. 

Real Life 🦸‍♀️ Super Hero

It’s always hopeful to see a doctor who specializes in your disease, particularly when the other seven that you see have never heard of it. They’re doing your best, for obvious reasons, there limits to their help. Seeing Klimas was cathartic in that regard and other levels as I’m hopeful some of her ideas will help with multiple issues I’m having resolve, or at least improve. Particularly crashing almost every day about an hour after I awake. Also the cystitis and peeing every 10 minutes. And the daily migraines. And five months between periods. So, all of it, basically.

As for the rut, I think an envy began sprouting in me that at first I wasn’t so aware of. It started in a very dormant way, even though I was really enjoying my trip in Miami. I probably had more fun than I’d had in all of 2019 combined, which could fit in a thimble. It began with a very attentive observation of my surroundings, of simple things actually, and seeing up close how people who have their health are able to live and operate, day after day. I don’t know why this time I was so conscious of it and in such awe. On a general level at all times, I am amazed what man in a state of homeostasis can do. Maybe because 2019 had been such a burning trashcan of illness and life that I forgot what real health looked like. I was so amazed on one hand, and on the other, the envy for their ease of capability grew in me like a weed. 

Singing the Beastie Boys

The logistics of family life, especially with four young children, is extremely difficult and doesn’t look easy. But it does look fun, too. I came from a family of six, so maybe some part of me naturally feels at home with that number. But to watch reliable bodies and all they could do became compelling and incredible. I’d listen to my brother and sister-in-law talk about plans, and I think I literally forgot about the concept of planning as a real thing. It’s not impossible and I still attempt it in my own life, but it is always tentative. Always. I am never, ever, a sure thing.  

Not a second thought about showers, grocery shopping, cooking big meals every night, meeting friends for dinner. How involved their social life was! I mean, they had one. How at ease everyday chores and tasks and errands (Or even just delegating them) were— not that they didn’t require work, but that no one was forced by potential physical repercussions to choose whether they would shower or grocery shop. They were solid people. They accomplished so much each day and were dead tired by the end of it, just when I’d start to feel a little more awake, strangely. They went to sleep with warranted exhaustion, and the sleep actually recharged them.

My sister-in-law was so alive in the mornings, which is incomprehensible to me. Both feeling alive at all, and being functional before 2 pm. When she wore workout clothes, it’s because she actually worked out. Not because she was a poser like me who wore leggings because sometimes just the thought of denim against my skin makes me cringe. 

I had truly forgotten what the privilege of health affords you across a day, a week, in all your many roles and expectations. I was amazed and then maybe progressively envious? Can’t say, but typically I’m overwhelmed watching the pace and the volume and the largeness of healthy peoples lives unfold. But for whatever reason, I finally felt it deeply in my bones, as though it’d been welling up there for years and I’d just never said it out loud despite it being glaringly obvious. To the point of it being useless to even repeat here. But it’s still flapping around in my brain, and I want to release it.  I’m warning you, it’s stupidly obvious: I am so, fucking, tired, of living life with this illness. 

How’s that for a Ted Talk?

It’s still there for some reason. It’s obvious, I get it, everyone in the world gets it– why it continues to circulate in my psyche like some grande revelation is beyond me. Maybe it just begged to be said plainly, without a “But” behind it or any justification for why having it has made me better in other regards! No, plain and simple. Just say it and leave out the decorum.

Pardon the F bomb, that’s just how the thought plays out. I write about hope and working with the hand you’re dealt and discerning ways to find meaning in the parts of life you don’t control. And suddenly it all faded quietly into the background. I felt like a hack. I looked around and could feel viscerally how much I wanted what I could not have. What was not mine to take. 

I can’t stay in that space long, even though I’ve still felt way a while now, though maybe not with such fervor. Zukav says that “The splintered personality must always choose between opposing parts of itself. The backbone of evolution.” I doubt it grows me any to want for what isn’t real. To live in a dimension where bad things happen without timely ways to always understand them. I am constantly walking the line between hope and despair. It is far easier to despair, I admit easily. I have to choose hope, consciously, with the intention that even if I can’t see the meaning in all of this yet, it will be revealed. Or at least if I’ll find salvation and treasure in it, the way I would try to in a life with my health. I can’t accept it’s all for nothing. I won’t.

Still, some days, some periods of time: So. Fucking. Tired. OK, won’t say it anymore. My mom will wag her finger.

Interestingly, I still had a great time in Miami. It wasn’t that I felt better there–I was crashed most the time. It was more of a simple enlightenment that being sick around people you love and like is better than being sick on your own. Obvious, I know. I  stayed in bed, sleeping on and off until around 3:30 pm. That’s when Olive and Miles (7 and 4) typically came home from school, and I’d reach down far for some strength and get up to greet them as they walked up the driveway smiling or skipping or holding art they made as though it were a proud flag.

And the Tony Goes To….

It was nice being around them. I really do treasure my role as an aunt, even if I can’t do more and play longer without tiring out. I was able to see Olive’s first performance in a play: School Daze. It was about school, and how school is hard. Can’t disagree with that. It felt so fun to go and cheer her on.

I’d meet them at the beach, but it’d be four hours after they’d already been there. But that’s the great part about kids (and dogs.) No questions. No backstory required. They’re just glad you’re there.

A beautiful part of children is how adaptable they are. They don’t seem to mind that I’m supine 80% of the time we’re together. Kids can tire you out, but they can rejuvenate you too, much like the ocean. Luckily there, I had both. And those two made me feel more alive than I’d felt in a while.

Happy Happy

Joy Joy

I like these pictures because they fit in my fantasy world where things are normal and that’s fun to pretend sometimes.

I guess being around the whole family helped re-tether me to the world. Seemed I had floated away from it, or maybe it was the world that had floated on without me. Either way, once I was home, I didn’t bask in the solitude or the quiet, like usual. Reuniting with Monty always makes me happy, and is the symbol of “home” to me. Otherwise a harsh reality settled around me that suddenly I was sick with no one around during the day. But it didn’t feel like respite.

In Miami I would often just listen to Estee on the phone, or working on some project, prepping food for dinner that night, caring for the twins. As my grandma would say “She’s a busy body.” I got used to the background sounds of people living, and despite not participating in it, it was comfortable to me hearing it go on. Comforting. A reminder that life moves continues on, no matter what you’re wearing or what room you’re in. Of course that same fact when you’re in the same four walls for months can feel worse than unfair. It’s a pitiful thought, but it feels very real that the world doesn’t need you at all. (That is NOT true and I don’t believe that in any form at all. It’s your ego messing with you, and it’s dishonest. All of it)

I guess the drastic change, whether it was the lack of kids to make me laugh or of late-night life talks after the kids went to bed, they all made my life at home feel disconnected. My mom had left for a trip to Colorado the day after I returned and I suppose what I normally call solitude began to feel more like isolation. I had this feeling that I’d probably had enough solitude to last me thru another decade.

I surpassed my wordcount by about 5,000 words. I have too much to say because I put this off too long too long and that’s what happens. I’ll let this fly and hope things lighten up inside me, then I’ll do a little better by saying more with fewer words next time. That’s the ticket. Between now and then, Stella is working on getting her groove back. I’ll get there. I always do. 

Health, Happiness, Grooves

One Arrow Only

Want to hear a funny story?

Well first, some housekeeping. It’s been more than a while, I know. I feel like an idiot bear emerging from hibernation 3 months late and everyone’s like Dude, what have you even been doing? Getting crushed, that’s what.

A health update for 2019: mine is still mostly missing. Hate it when that happens! 2019 has continued to be a slow-rolling, sick train, punctuated by outings to every type of doctor, assuming I don’t call in sick to the appointment. Calling in sick to the doctor; what an absurd reality.

This elongated crash state feels like some kind of warped dream when I reflect on it. I would blame this on the repetitiveness of days that can start to feel indistinguishable from stagnancy. It feels like…

Day

After day…

After Day…

After Day…

After Day…

After Day OK I think you get it…

That last photo was on my way home from a cystoscopy, which they put you under for, thank Gawd. But I was a little…out of it. The procedure is supposed to help the interstitial cystitis, but low and behold, I still find myself having to pee like a racehorse a LOT, soooo, maybe it’s just taking a while to work. Here’s hoping.

As always the creative challenge of life with chronic illness continues. What a strange conundrum, living with a body that doesn’t know how to function as a body. So, what to do?

Reading Murikami’s 19Q4 followed by Killing Commendatore, which I’m sad to have just finished, have kept my imagination wild and busy, and I wish I could thank the guy personally for what joy he’s brought into my life. Reading Murikami’s stories doesn’t just give you ideas to reflect on–it’s a really involved experience just reading one of his books. It’s very involved somehow. As though a real exchange were taking place, but I don’t know how that is possible.

Before walking home from my parents some nights, I think of the characters inside the pages, waiting on me to get into bed and open the book so they can get on finding their way. It’s by far the deepest I’ve fallen into a body of work, fiction anyway, and I have absolutely no idea how he does it. I’m just glad to get lost in something so positive. It’s too easy to fall into counterproductive thoughts or habits when you’re so physically limited. So as always, it takes a good chunk of mental exertion to stay on the right side of the experience and to be cautious in how I tell myself this is all unfolding.

***

For no good reason at all, I get into bed at night and truly believe I’ll be improved tomorrow. I imagine all the things I’ll do. All the catching up and even what clothes I’ll wear while I’m busy bustling around the house. I can see myself cleaning out closets and on the phone, checking things off my list–Monty following me, room to room. I can envision it all, and drifting off, I always expect that tomorrow will be better. And yet for roughly 120 tomorrows, I’ve awoken to mostly a repeat of the day before. Oh real great Universe! 

Now and then I receive some improved feeling that I’m finally rounding the corner of this thing and the worst is over. Perfect! Then either hours later or two days later, I’m paying a high price for what feel like very petty offenses. The invisible line of this thing– it’s the most frustrating part. It makes any kind of management of it feel impossible.

It’s like driving through a backwoods town in the middle of the night without any headlights on. The “warning signals” of this illness are meek and inconsistent. You have to pay such careful attention to what can be a trigger, but even still, it seems sometimes you crash for no reason, or have a full month of migraines for no good reason. It can be hard to see straight at all and you wish you could just turn your danged headlights on!

I  am surprised this crash has endured so long. But maybe it’s silly to be surprised. It’s certainly worthless to take it personally, and yet it’s easy to feel that way. Waking up to the same fight day after day can easily fuel the ego, which will try to convince you of just that. That it’s personal and unfair, and going down that route doesn’t do one bit of good. I have to keep things straightened out in my mind and brush off ideas that are useless and untrue. Maybe the truth is simpler more often than it’s complex. As Tolle says, “It’s neutral. It always is as it as. Nothing more.”

The truth here is, this is the nature of the illness I have. It waxes and wanes, so there’s no reason to be caught off guard or believe I’ll never improve. The fact is this is a disease behaving like a disease. The physical toll and reality are hard enough, no sense getting hit with a second arrow, right? The second arrow is feeling bad about the first arrow. The first arrow is being chronically sick in the first place. One arrow only, please and thanks.

Defaulting back to simple truths is how I’ve been trying to handle all of this, psychologically, but of course it’s not always so easy. Actually it’s never really easy, but it is meaningful when I can find joy and purpose despite it. I’m happy to at least know what ideas and thoughts aren’t helpful to the situation and to vanquish them before they have a chance to take hold and grow. I’m happy to have the counsel and ear of my mom, who hears me out and comforts me when the struggle feels too big, without me barely having to say a word. Talk about gifts you cannot buy.

Despite knowing certain truths consciously, I find myself always questioning myself. I lay in bed thinking This is obnoxious. There must be something I can do. But some days really are just bed-to-bathroom days, and I have to be honest about what I’m capable of. My life feels split in two sometimes, because so much of my communication with people is through text. So I’ll be lying in bed feeling deadly, but texting smiling emoji’s with plenty of exclamation points to show my love and enthusiasm for other people, and I think how strange it is, the dichotomy of the life I project sometimes and the one I’m actually living. I imagine maybe everybody struggles with that, in their own way. We all contain multitudes.

The timing of all this is crappy, of course. There’s never a good time for a crash, I suppose, like there’s never a good time to break up. But there are worse times for each. Being this crashed in the middle of trying to pack and prepare for a move is like the timing of getting dumped on your birthday. Oh well. Even after birthday breakups, people recover. I think.

***

The story!

Last week I was tired of waking up and feeling like I was on my deathbed, naturally. So, I figured there had to be some good meditations on waking up and getting your body psyched for the day. Right now, waking up feels like I went to sleep by getting hit in the head hard with a frying pan, like the characters in cartoons. I’ve also been very weak in the mornings and getting out of bed has been really challenging.

So, I find a mediation easily on youtube, geared toward waking up and energizing the body. It’s 15 minutes. Great. I press play. 25 minutes later, I wake up to a commercial playing and realize the meditation meant to wake me up peacefully sent me back to sleep. Swing and a miss! So, I try another.

This one is also 15 minutes and looks promising. Energizing! it claims. So, I make it through the first 13 minutes. I’m having a hard time focusing because I’m really weak, I’m fighting the bone-crushing fatigue and my migraine is back. But on with the show. The woman guiding the meditation says to repeat the phrases she’s about to say out loud. OK… “Repeat after me” says the slow, assertive voice emitting from my phone. “I feel strong and powerful.” I can’t help but let a smile melt across my face. I say it anyway. “I feel strong and powerful!” “I feel energized and ready to take on the day.” My smile grows bigger. “I feel energized and ready to take on the day.” Now I can’t help but actually laugh. “My body is healthy and my state of mind is focused.” Ummmm…

At this point I am half repeating and half laughing, because I don’t feel these things the woman is saying, like at all. But the fact that it’s making me laugh feels like a success all on its own. A few minutes later, I fall back asleep. BUT, it’ a very peaceful sleep. So maybe it wasn’t a total loss. I imagine once asleep I was “energized and ready to take on the dream.” ;)

Maybe when I’m a little stronger it will work. I don’t think it will be long now, yet I still have no idea why I think that. Owell, it feels good to believe it anyway.

Health, Happiness, and I FEEL STRONG AND POWERFUL

 

The List of Broken Things

Everything has been breaking lately. The dryer, the tractor, my phone, the pressure washer, leaks in the ceiling, moisture stuck in the windowpane. (I could go on.) And for the last I don’t know how many months: me. Just add my body to the list of broken things. That was the thought I had while my mom listed everything going ka-putz on us.

I am getting in to bed and once again praying for the normal things, that we can find the right people to fix what’s broken, expressing gratitude for all I have, all I’ve been given, and a special intention that tomorrow will be better than it was today. A prayer I’ve been saying basically since Christmas.

2019 has been such an immense challenge. I feel like there’s some secret virus within trying to take me down, then I remember that Oh right, this is what a bad crash feels like, I’m just not used to them lasting so long. The last few weeks have been really trying.

I haven’t been getting out of bed until after 3–not really waking up I mean. As soon as I feed Monty then feed myself, I’ve reached my limit. The first ‘mini’ crash of extreme tiredness and weakness rolls in like a heavy fog, and I feel like I can do nothing but collapse under the weight of my newly dense body and immediately fall asleep. This isn’t so typical of my crashes. I rarely actually sleep that much at all. I’m horizontal, but not dead asleep. This feels new and I just can’t figure out what’s going on.

I’m writing this on my phone because trying to type on my computer from this position just doesn’t work. I have so much I’ve been writing and wanting to write and post, but finishing anything has been nearly impossible. I feel so angsty leaving the blog blank, so I figured I’d let it be known that I’m alive, I’m just probably asleep as you read this now.

It’s been hard accepting the strict terms of this crash, which has been very little upright time, and littler awake time, so it feels anyway. The weather has been beautiful, and this being my last Spring in this house, I’d prefer to enjoy more of it before I go. But for whatever reason I have really been taken down by such a “late blooming” crash. Typically by this time, the inevitable “Christmas Crash” has faded, and the good weather usually gives me a health boost. I don’t remember ever being so debilitated in the Springtime, but me no likey.

My parents are busy trying to prep the house to go on the market and cleaning and fixing things, yada yada yada, but I’ve been more of a useless flesh tube than ever! It’s crappy timing because I know they could use the extra man power, but luckily people like the amazing Matt has donated so much of his time to help any way he can. And I know friends like that are something to stay grateful for during all this.

And Miss B, the woman who cleans my house and literally makes it a sunnier place as soon as she walks in. She calls me “sugar” and “baby” and when she leaves she hugs me big and says “I’m prayin for ya Mary.” I tell her the same and she says “I love you, you’ll be better one of these days.” I tell her thanks. That I love her too. And that I believe her. And for whatever reason, I do. Cleaning lady? No, she’s like some angel who happens to clean up while she’s around.

She was here this morning and I slept through 3 of the hours she worked. The sound of the vacuum tracing lines in and out of my dreams. I never sleep while she’s here. We normally talk and laugh and even cry sometimes, covering all the bases while I drink coffee and she cleans in circles around me. I watch her energy in amazement.

Then Matt came around 2 and has been pressure washing all the cement around the house outside. Talk about back breaking work. I tried it for 10 minutes yesterday and had to come inside to take a breather. (Pathetic, I know) As soon as the machine started, I laid my head down and fell immediately asleep, not waking up until well after 5, feeling terrible. Matt was still working and I watched him outside as he worked, his headphones in and in his own little world as he managed to clean so much surface area. It feels like a miracle when I watch capable people do hard work. But these things that seem like miracles maybe actually aren’t–it’s just what you’re able to do when your body knows how to be a functioning human body. The miracle is the kindness of people who are so willing to help. I guess it’s just been so long, I can’t remember anymore what that physical capability must feel like. But let’s just say I fantasize about it more than ever.

I believe I’ll get there one day. That all of us will. I can’t explain it, but there is this solidity in my gut, magic ball that shows me living a life where I’m well, usually I’m outside pushing a kid on a swing. My kid? Don’t know, I hope. But I just have to believe this will happen in my lifetime. If I’m 60 well then, I’m 60. But my gut shows it far earlier than that. So just hang on yall. I know we will get there, we just have to make it through this ridiculous, tough middle part. It’s only like the 3rd hardest thing in the world! But we can do it. Our time of health is waiting for us. In the meantime, I’m lucky for people like Matt and Miss B, more grateful than ever.

So it’s back to my usual routine– getting in bed, saying my prayers and asking God to please, PLEASE (just to make sure she’s paying attention) give me some energy tomorrow and let my rest actually refuel me. There is so much I want and need to do. Like take a shower– it’s not asking so much! I know I will break from this crash soon, or I am hopeful and expect that outcome. I also know the toughest part of the game (for me) is surrendering while you’re in it. Remembering this too shall pass. Right? Right.

I feel I’ve been doing too much surrendering, and I wish there was a way to successfully fight back against this thing. But I’m out of ideas. And I’ve been sick long enough to know what happens when I do push against it. Might as well run my head into a wall. I can’t afford to pay anymore. I’m broke! Body broke. I know I just have to wait it out, and I will emerge eventually.

At any rate, maybe God reads blogs in all that spare time she must have. So maybe she can check this one out and throw me (and a few million others) a bone. Oh and Monty too, not because he likes bones but because he injured his leg yesterday and now he’s out of commission too. When I say everything is breaking, I mean it. Just great.

Anyway, I’m laying my trust in the universe, in an intelligence that knows more and better than me. But I am hopeful too, always hopeful, that tomorrow might be the day things start to turn around. And if it’s not, well, maybe I need to send a package of pill bottles and a petition to Heaven and get their attention up there.

A final thing- next to my bed is a medicine stick that was given to my dad by a traditional Indian medicine woman, back when we lived in Colorado. It’s made with a coyote skull on it and has a bunch of different symbolic items painted all over it, with feathers hanging down and other things I don’t know the meaning of. Of course my dad was sick and dying from cancer when she gave it to him. But I remember him in his compression stockings walking laps through the kitchen, living room and dining room, carrying that stick with him, with a smile on his face. Obviously it didn’t cure him, but maybe it made his struggle less. Maybe it gave him courage in the face of pain and fear. Maybe it gave him strength to fight for just the right amount of time before he knew his work here was done. At any rate, I look at that coyote face and ask my dad for my own kind of help, whatever kind I need the most. Hah, I don’t even know anymore. But it gives me hope anyway, having it here, having seen me through some very sick times and also seen me emerge through them as well. Not breaking. That’s about as much as I can hope for, for now.

OK, time to sleep for the seventh time today. I have many more happy things to write about, once I’m able to stay awake long enough to put them together and edit them properly. My mind of course has struggled too lately and been a bit scattered. It can hardly distinguish between dream life and reality anymore. Which makes sense considering how much time I spend on the other side of things. But I don’t think it will be much longer now. Hoping this coyote skull will bring some healing this way. Or at least the strength to smile through it, just like my dad did, who was up against far more than I am. Now that’s remaining unbroken. I’m so happy he showed me that was possible.

All the best to everyone, and I expect to be back on the up and up soon.

Health, Happiness, & Unbroken Things

Confronting Change You Can’t Control (Part 1)

It could always be Great. 

My mom told me to write that on every wall and mirror around the house. I was on the phone with her, basically in a downward spiral of apprehension about a major change happening this year that is mostly out of my hands. Allow me to rip off the band-aid: My parents made the decision to move to Colorado this year, back to my hometown. Pause for dramatic effect.  

Many reasons played into that decision, a big one being that a majority of my moms family lives there and we will have a tighter community of support. Given that 2/3rds of our fam is sick and one family member is a dog, the move makes sense. It can be a tad isolating out here on the ol ‘farm’.

My moms casual reminder that it could always be great was a nice departure from the supposedly optimistic adage “Hey, It could always be worse!” I’m not sure that phrase has ever really made me feel better while in the midst of a struggle. It’s like “Well hey, both of your legs could be blown off!” “Riight. That’s true. I could have zero legs right now. Cool, thanks. I feel better.”

So yes, I have both legs, but I am still pretty afraid of the whole thing and I guess that makes sense given the scale of this. It’s a big change, and since I don’t have the health to live on my own yet, it’s one that’s out of my hands, which always adds a pinch of frenzy. I’ve sort of tortured myself thinking of ways to stay here, but I just don’t have the physical stability to do it. This last crash that’s held me down since Christmas just reinforces how mercurial my *health* is and how unreliable  I am as a result. A few weeks ago the crash finally let up for roughly a week, then returned angrier than before, and I’ve been essentially a half-living disaster since then. Yeaaaah wooooo! 

You can see how thoughts like that (I’m sick, my life is chaos, I don’t have jurisdiction over my own life) can play with your mind the way a cat bobbles a feathery toy around. It can take your whole outlook and shape it in many variations. 

One of the hardest parts the last few months has been maintaining an open mind that this might actually be a good thing. It’s meant a lot of reigning in of my thoughts, which tend to go default mode into armageddon type thinking. It’s as though some small part of me decided early on that since I didn’t choose this, it wasn’t a good idea and it would end in disaster for my life. And it’s pretty crazy how easy and quickly those thoughts can assemble, pile on one another, and leave me completely convinced that I’m going to melt away and die in my parents basement…or some other absurdity. I don’t know where that fear stems from—I mean I’m pretty sure they have internet in Colorado. 

I’ve had to work to clean up the useless, unhelpful thoughts that tend to mess with my mind and sense of wellbeing. By that I don’t mean I dismiss all the thoughts or feelings I have about this—which are of course, a lot. Certainly there is a legitimate sadness and type of grief that comes from leaving what’s been home the last 18 years. Those feelings deserve their own validation and processing because, damn, it’s sad to leave the people and place you’ve come to know and love so much. Louisiana has felt familiar and comfortable for a long time, and it will be tough to leave, even if I do plan to come back. ;)  

What I am referring to are the haunting thoughts, the ones that make you feel bad about things that are not within your control.

This kind of thinking totally blurs and limits my perspective about the life I have. It dismisses all the good and incredible parts of it, doesn’t see possibility or feel hopefulness or gratitude. It downsizes the significance and value of people and things just because they aren’t in line with what I had planned. (I think humanity might have an addiction to plans but that’s another day) These are just hypothetical scenarios based mostly on fear and a future no one can actually know. Like Tolle says, it is always more empowering to face facts. Even when the facts are scary or we wish they were different, it’s in acknowledging the real and being present in the now that we have access to our innermost power and strength. 

I realized early on how incredibly contrasting the outcomes are that emerge just from framing things in my head one way vs. another. This is something I do have control over, and it’s become pretty important that I put this ability to use, otherwise the ugly thoughts take over and down the rabbit hole I go. 

It’s been a good but difficult exercise to step back and try to just watch the way my mind can interpret the same reality in two completely different lights. The modern mystics would advise to consider the circumstance from the point of view of an objective observer. Watch your thoughts, but don’t become entangled in them. Allow them to appear, then let them go. Easier said than done, of course. But at any rate, the mind astounds me in its duality. For instance..

Here is one side of my mind thinking about the move: Reiterate the story that my life is out of control, that the disease makes all the choices, that I have no say so about things and thus can’t really be happy because it’s not up to me. My personal growth and goals and contentment will all be stunted or I’ll cease to pursue them because my lack of health and other people have the wheel and I’m just a passenger to my own life. What’s the point in trying? As a passenger I don’t decide where I go and thus my happiness isn’t my option but one left up to others or whatever new circumstances materialize without my consent. I don’t want to go. It’s not fair I have to leave what feels like home. What about my family and friends here? What about my dream to live in uptown New Orleans one day? Now it will never happen. I guess I’ll go eat worms. 

I can’t tell you how easy it was for each of those negative thoughts to formulate, one after the other, building on each other like a lego tower turning into a whole city…

Now here is my mind consciously thinking about the move: Colorado? That’s cool, I guess I’ll get packing. 

Could the differences be that dramatic? And is it actually possible to participate in your own life that way?  In The Untethered Soul, Singer makes the point over and over that of course it’s possible! We don’t always decide what happens, but we always the ultimate say so in how we react toward the circumstances of our life. And it’s those decisions, not what happens, that leave us either content, at ease, joyful, whole, or bitter, angry, jealous and depressed.

All it took was a few negative thoughts to quickly unravel into my making the choice to play no part in my own autonomy or the trajectory of my life. Just because I’d be living somewhere else, I removed myself from having any accountability in manifesting a life I wanted or that I could be proud of. That’s a crazy conclusion to make! But when you’re present and you actually break down your thoughts, you see what a huge majority of them are insane and simply need to be let go of. That’s not so easy when you’re hit with an onslaught of frenzy and angst, like a whirlpool that takes you down, where there’s no clarity.

So I have to practice at disarming the egoic force from taking over in my head, which I do by sword fighting the air with a Star Wars lightsaber. Just kidding. Like Tolle teaches, whenever I have a future based thought made mostly of fear, I replace it in my mind with facts that are actually true. I try to repeat positive reminders instead of playing a record of apprehension on repeat with a sad ending.

In other words, I do the thing basically all chronically sick people must learn to do at some point: surrender.

As always by ‘surrender’ I don’t mean give up–ever. I mean to leave a neutral space open in your heart and your head where good things can happen because you allow a new path to be paved even though you didn’t design it. If I had understood earlier on in my relapse that reality doesn’t really care about your plans, I might’ve saved myself a good deal of pain from what was already such a hardship. I thought I could fight things that were already in place and moving quickly forward. Life was just waiting on me to catch up to what was real, instead of trying so hard to hang on to the way things were.

All I know is that there is a pulse to life, a certain beat that resonates deep within us as individuals and as a collective. We can typically feel through that pulse a general sense of what direction life is moving in. We can resist. Be the fish swimming upstream. Or we can lean in and greet life with an open and adventurous spirit, despite limits and changes and things beyond our control. It’s true I am afraid and I’m sad to leave what I thought would always be home. But I have been shown over and over the miracle of surrender, of allowing life to ‘move me’ and the amazing outcomes that can result when we feel fear but move forward anyway. It always comes down to following that thumping compass we hear deep within and far beneath us.

Here’s hoping that it just might be great.

Health, Happiness, Hello Colorado

 

Why Is It So Hard to Pee Into Those Urine Sample Cups?

Is it just me?

If it is, then I should feel pretty vulnerable and embarrassed after this. I’m sorry mom. I really do try and make you proud.

Is it just women?

It’s hard to say but I don’t think so. I do think requires more skill on behalf of the woman, I would think. Then again I wouldn’t know, I’ve never peed into one of those “specimen catchers” standing up. It seems like all you have to do is aim and shoot. Though I imagine splash-back could be a problem. Also I’ve heard dudes talking about the “split stream”, which would make producing a clean catch pretty tricky. But that happens to the lady folk too. So I’m a making a leap of faith in assuming I’m not the only one who has issues here. Right? Guys? Right guys? 

I’ve had to give so many urine samples via those small plastic lidded cups over the last ten years, you’d think I’d at least have a technique mastered by now. But there’s just so little prediction in the direction that things will go once the golden exit begins.

You know the order of operations. First you go a little to see what direction your body has decided for the sample to go that day. Cool, you have a good idea. Place the cup in position. Aaaand begin. Aaaaand what is happening. 

Somethings gone wrong.

It starts to go awry when a renegade stream breaks off from the group for no reason at
all. Whyyyy. I can’t yell at my pee mid stream and direct it on where to go! It doesn’t respond to verbal orders or worried yelling.  Why would half of this small waterfall decide to break apart from the its fluid crew and travel backwards? Return to the team you idiot!

 

Obviously, things don’t get better from there. The cup can’t catch the rebellious run off and the original stream simultaneously because they’re too far apart, so now I have to guess which one has a higher volume and catch that one. And because I’m indecisive, I start to get a little panicky, I can’t tell which is better. Now I’m going back and forth with the cup between streams because I’m worried the collection isn’t enough, and I’m right. I often miss more than I catch in the chaos. Great. Now there’s pee in places I’d rather there not be pee.  It’s just my hand don’t freak out. (I’m talking to myself now) I mean urine is sterile, so I hear. That was the whole point of those deep breaths I took before beginning the process. You can do this Mary, just pretend it’s a game at the carnival, you’re a competitive gal.

I liken the stress to that of being on a motor bike and panicking that you’re going too fast but in the frenzy you keep hitting the gas, gunning it, instead of the break. You increase in speed until you crash and your shoe flies off. That actually happened to my friend Cody and I once. My shoe really flew off!

Anyway I guess it’s just the stress of getting it right and knowing there’s a limited amount

The Hell is she doing in there?

of material to work with that I end up internally yelling with my head down “WHAT. IS GOING ON DOWN THERE?! GET. IT. TOGETHER!” It’s like yelling at some kids I’m babysitting who I can hear are misbehaving in the basement. I hope I’m not accidentally
yelling that out loud in the stress of those 30 seconds. I can just see the nurses faces upon hearing the racket inside the bathroom, shaking their heads in resignation, Where did we go wrong with our children?

Now I have to place the cup on the counter, but why is the counter always wet? Is that someone else’s renegade pee? Impossible to know. Also, eeeew. So I awkwardly wipe down the counter, (still squatting on the toilet by the way), place the cup down, screw on the lid, make sure that’s wiped down and examine my sample. It’s like I want the nurses to be impressed with it. “Wow, did you check out Gelpi’s specimen cup? Not even a droplet on the outside!” I realize they’re wearing gloves and couldn’t care less about any of this.

Then you open that little stainless steel door to drop off your cup, and you see all the other specimens. Woah! I’m always surprised by the array of yellow colors that make up peoples urine. It’s like 50 shades of pee in there! I can only hope mine is the right shade of neon.

This is clearly Ms Gelpi’s perfect clean catch. How DOES she do it!?

It feels like an unnecessarily stressful event that I’ve had to do so many times, I just can’t figure out why I’m not better at it. Is there some method I’m unaware of? I had to give a sample yesterday just like I did last week and the week before that and a month before that, for all kinds of fun reasons. And still, I entered that bathroom, wrote my name on the cup, took a few deep breaths, and once again the urinary chaos began.

At least this time I didn’t fall. Yes, that is a true and exceptionally unfortunate story. It happened in the E.R. and I’m pretty sure they gave me a horse tranquilizer or something close to it prior to calm down the excessive adrenaline. I was in SVT (Supra Ventricular Tacchacardia) and flopping around like a fish out of water. Then I was tranked and expected to give a sample without help! So yeah, I fell. Let that image settle in and make the rest of your day happy.

Wait, where am I. 

Anyway, maybe I’ll develop a better method over the next few months. Or maybe giving urine samples will always just be one of those things we all have to do that are oddly more difficult than they should be, like hanging curtains. Don’t worry, because I know you might, I’ll let you know if there’s improvement. Stay golden yall! (I had to)

Health, Happiness, A Clean Catch

Lost: Life Force. Answers to ‘Mary’

*I Wrote this last week. I’m feeling better now ;)

Universe, God, sky, grey clouds, screeching frogs outside– helllp meee. Someone drained my life force in the night, and now I lack the will power to even use an exclamation mark. Not sure what happened. But I couldn’t go on letting myself be buried by the wet blankets of my mind. I had to do something. Something positive, and fight back against the road to stagnancy. I felt like I was slowly turning to cement! Hey look there, I used an exclamation point. 

Of course the weather is that in between weather that makes entire cities look like they could use therapy. Not sunny, on the cusp of rain but not raining, just a wet, grey, dish rag that drips sometimes and peeks the sun out in others and never definitively decides what it wants to do. So, can’t rely on the weather to help put humptey dumptey back together again. Find something else. 

I would bathe but I don’t have the energy. My arms are getting weaker. I need to lay down again. I’ll try to think of good things. 

***

OK, I’m back. It’s been almost two hours. I didn’t sleep. My willpower seemed to be dropping like a heartbeat beeping slower and slower on the heart rate monitor. Beep. Beep. Beeeeeeeeeep. She’s a gonner. It’s like all the feel-good, or feel-right chemicals in my brain have truly drained. The stuff that makes you want to go and do and play were drying up. Or already dried. 

While I’m a little weak, a little dizzy, the residual migraine still thudding behind my eyes, it’s not my body making today so hard. Well maybe that’s the setup for this mindset, but it’s calming my frenzied mind when I have no physical ability to match it that feels impossible to do. Keeping your mental sanity while waiting on your body to come back to you is probably the hardest part of all of this—a challenge that needs constant knowledgable reminding about from people who know better. I’m amazed how easy it is to forget simple truths. Clearly I’m still learning. I guess that should probably always be the case, if only I were a bit quicker at picking these things up. 

I feel the need to do so many things, but most of them aren’t doable right now. Then I feel doubly bad about not being able to do what needs getting done. I guess that’s why I’m sitting at this chair and typing, because writing is one thing I can do. 

I have learned that you can fight back against days like this. Despite nothing sounding good—for example, no type of music sounds decent to listen to, and the idea of watching TV or a movie feels even more depressing. (During the day) Even reading the book I’m thoroughly enjoying (19Q4) doesn’t feel right. I read fiction at night. None of these give the impression they would fit. If I were healthy I would go for a run, or to the coffee shop, change up the scenery and get those endorphins going. But since that’s a no-go, it’s another creative challenge to figure out that comes with the territory.

Sometimes just admitting that you’re having a crappy or hard time helps create the tiniest gap between you and the experience you’re having. This is what Tolle teaches—finding space between you and the circumstance so that you might see it from the outside objectively and not get lost in it and take all of it personally. (The Why Me Route) 

You can write it, say it, draw it, sing it, whatever it is. But transferring some of the weight onto some other medium helps prevents you from becoming tangled up and trapped in it—where every thought flowers at once and the idea of living the rest of your life frantically swirls around your head like a hurricane and feels impossible. The enormity of it all piles up because you think I can barely get through today…how will I ever get through the next three months? You start thinking 5 years into the future, your will power plummets, until something—in my instance, Monty scratching at the door— snaps you out of this useless futuristic angst and brings you back to right now. 

All I have to do is survive right now. Which sounds easy but when your willpower is at a zero, it’s actually a praiseworthy task to achieve. I survived another day!  I can’t survive anything 3 months from now, I’m right to think it will be impossible, because I can’t have a clue what will be in 3 months from now. It’s easy to think everything will be the same, and it might. Or it’s easy to see a dozen problems that all feel unsolvable. But all I have to do is look at the history of my life for proof that it can change in a snap, and 90% of the time, you don’t control the change, or predict it. You only go about figuring out how you’ll respond and adapt to it when you get there.

So how do I make now better? Unfortunately having a rebuttal for your mad mind doesn’t make it simply stop in it’s tracks and suddenly you’re grounded and fine. I’m not that good yet. Just knowing what’s helpful and what isn’t doesn’t immediately make you feel happy and give you your life juice back. But it might help slow that thought whirlpool down. It might allow for the smallest stillness to get through to you and allow the truth to calm your fast beating heart. Mostly it involves just having to live through the tension of the feelings and the knowing simultaneously that they won’t last. They may not even be true. As hard as it is to work against something inside you that feels like it’s actively dragging you down or drying you out, I know that trying anything is typically better than rotting on the floor like roadkill and trying nothing at all. 

On my two hour break, I listened to a podcast called Revisionist History by Malcolm Gladwell. I highly suggest listening to it, but it surprised me how just hearing someone else’s voice and someone else’s story can help pull you out of the thought whirlpool of your own. It’s nice getting out of your own head and being exposed to what people before you have met and endured in their life. I listened to Sammy Davis Jr.’s story A Hug Heard Round the World and hearing of his life and challenges put things in perspective, at least temporarily. This is the importance and power of story telling, I think. It straightened me out for a while.

I also downloaded some foreign language apps on my phone a few days ago so I can start to remember and re-learn french. I’ve forgotten so much of it and I miss it. I plan to visit France for a while when I’m better, so I’d like to get back to moderately fluent. I can’t wait to sit on the sidewalk again, drink my cafe au lait at at a table with a white tablecloth, and write in a fresh notebook Well, I’ve finally made it back to Paris. 

I didn’t want the invisible vacuum of thoughts inside me to win, so I had to fight back and share these crappy thoughts with you, sorry guys. I guess writing these thoughts out was my way to create the gap. The ability to step back and watch today unfold was my way forward. Otherwise I was slowly being swallowed and nobody wants that. This was my version of winning! Hey look at that, I used another exclamation point. That’s my comeback for today, using an authentic exclamation point. A sign of life. Beeeeep. Beep. Beep. She’s back people!

I think for now that has to be enough. 

Health, Happiness, Surviving

Day 7: The Final Day