(Or if you don’t, it’s Signing this petition..that’s what you’re supposed to do..just in case there is any misunderstanding there. OK then..) Friends, Families, Duders, This is one of the most important posts I’ve published… More
I have to admit something that feels a little shameful, and since this blog seems to inspire little dignity in me and zero reverence I’ll go ahead and do it.
Lately I’ve felt a schism crack inside of me. I don’t know what it is, a Campaigner and a Skeptic. I’ve been advocating these last two months since I began the petition asking the NIH for an increase in funding for M.E. I can’t tell you how tired I am of just writing that sentence, and probably if you’ve kept up reading this, your eyes just glazed over. And then I feel bad about feeling exhausted by it. I believe deeply in the campaign and I want more than anything for it to do what it set out to, which is actually to change things in a quantifiable way. This whole thing has been fronted by social media, so I’ve spent hours posting it on every forum, every ME/CFS Facebook page, (of which it turns out there are like 4,000), tweeting to the same groups and other organizations I’d only just discovered, and any and everyone involved in the CFS community, including celebrities who I’d read had the disease. This includes Sinead O’Connor and Olympic Soccer Athlete Michele Akers, but I didn’t hear back from either. I thought about singing a version of “Nothing Compares” to Sinead but rewriting it with lyrics that explained the issue and pleaded for higher funding. But I never did it. I head Glen Beck has ME, but I’m just not going there. I just…I can’t.
I did actually write a song, a two chord song on the guitar, so far titled “Chronic Fatigue Syndrome” but we’ll get to that later. Similarly I’ve been sending emails to both friends and strangers, asking them to do something. But doing this day after day can start to feel..a little desperate. Sometimes I didn’t like myself. It feels like I’m asking all these people to do something for me, people I don’t even know. But I’ve had to constantly remind myself, when I start to feel like some kind of annoying car salesmen with poor boundaries, this isn’t really for me, but for something so much greater. It always has been. One look at the comments page of the petition and it’s so clear that we need help, and we’ve needed it for a long time. So if I’m gonna go for it, I need to go for it. STOP BEING A PANSY, in other words.
Despite many people and organizations reading my story for the first time, I find myself rolling my eyes at my own account. And I think God, what’s wrong with me? Where’s my pride for this fight? I have to remind myself that this has been a 30 year injustice that started before me, and I am just trying to help fix it. And then I find myself even struggling with that word. Is this really an injustice? And I realize when I ask that, it’s coming from a failure of perspective. The insecurity considering my own experience with this illness, and my sense of normal, which is inside out and backwards. Even though being sick has been the hardest battle of my life, I still look around at things and think “But I’m OK.” Sick or not, I can find ways to make it all work. I have so many people and so much love behind me that I know I’ll be OK. But there are 2 obvious flaws in that thinking. To begin with, when I really break it down, I think
Mary, you’re living in your parents pool house. You aren’t able to work anymore. Sometimes weeks go by without leaving the house or seeing anyone even close to your age. You live in a town you have no connection to except for the pharmacy and three doctors. You hang out with your parents A LOT. Last week your own mother washed your hair for you in the bath because you were too weak to do it. And showers, let’s not even talk about showers. The point isn’t that my life not being normal is the problem, it’s that I’ve become so accustomed to what the illness has done with my version of normal. I forget, this is actually kind of a huge mess that I’m just living out as best I can, one day at a time. I don’t plan things, I can’t keep them. Somewhere, I sense a clock is ticking. It can’t last this way for long, right? And if it does, would I be OK with a life like that?
So is this an injustice? Yes. Read everything that’s happened with this illness pertaining to the CDC, HHS, and the NIH over the last thirty years, and it would be hard to call it anything else. Just because I’m surviving and ‘OK’ doesn’t say anything about the millions who aren’t.
And that brings up the second flaw in my perspective: I am not nearly as sick as so many others who have this disease. There is a scale to the illness in terms of intensity. A portion can function partially, but it’s hard to call those who are at the other end of the scale “sick.” Their bodies are shutting down. Confined to one room, unable to talk or tolerate sound, eating through a tube. Would we call that living? So many people have been sick for decades, their husbands or wives gone because life with this disease hugely impacts relationships. Some can’t understand it or even really believe it. One woman told me her husband divorced her because, he said, “I can’t watch you slowly die anymore.” People, especially husbands, hate feeling like there’s nothing to do for it, no way to help. And at this point, that’s basically where we are. You’re lucky to find a doctor who knows much about it. All of this reminds me; sure, you can make lemonade out of lemons, but there is a far deeper issue at play here, and it’s been slowly building into what is now a health crisis. It’s like the equivalent of the Velvet Revolution- a calm, quiet crisis. It’s gone on gently behind the scenes, behind the noise of other major news, of more important health issues, diseases with names that don’t make a person stop and hesitate whether it’s “real” or not. So I have to remind myself, this is beyond lemonade, and this fight reaches for things far beyond me. This is for the thousands of people who are far and away worse than me, who can’t fight for the change that has long been needed. “Sick” is such an understated way to describe them. “Slowly dying” is more accurate, just like the woman said.
So, I need to stop feeling apologetic for fighting for this change. Yeah, it’s probably annoying on Facebook News Feeds, but I’ve seen my share of weird engagement albums of couples in urban settings, and political rants and pictures of peoples lives that are awesome that make me feel incredibly small and boring. So, I guess it’s OK to annoy with a petition for a while. It doesn’t mean I have to become a full-time advocate, but I need to see this thing through to the end, and getting petition signatures is really only phase 1. I need to participate (at least virtually) in the protests this week, because it matters to me, and I don’t know why I feel like I should keep it a secret that it does. The real work might just be beginning–getting the big dogs on the phone, and in person, and making the case. I will say, I feel more far more confident reaching out to these people with 33,000 signatures behind the request. Printed out, that’s over 1,500 hundred pages of names. That’s impact! And that’s what I was looking for. So Thank You, all of you. A petition doesn’t work unless the people sign. The next phase will be interesting and could take a while. But, as always, I will keep you posted.
I see big change up ahead. Monty too.
Health, Happiness, Justice
“Change will not come if we wait for some other person, or if we wait for some other time. We are the ones we’ve been waiting for. We are the change that we seek.” -The man, Barack
Toward the end of this winter, I sat in a bathtub, tears coming down my face, and prayed for change. Things had been stationary and repetitive for too long. All my parts, body and mind, were beginning to go stir-crazy, and I’d given it a solid go. I think in modern times, being confined to the same two rooms for long periods of time without real socialization and not going totally insane is a kind of victory on its own. Things went from stationary to stagnant, and I’m pretty diligent about avoiding that disposition. Undoubtedly, it started to wear on me. I closed my eyes and envisioned the “path” of my life like a black dotted line on a treasure map–obviously th line had been very straight for a while. But I visualized that in the spring the dotted line would take a sharp turn, still progressing, still moving in the right direction or whatever, but that there would be a marked change. It would stir things up, it would springboard the stagnancy of sickness and the same two rooms and same faces at the pharmacy and pop them into the air like popcorn. I wanted an interruption I guess. And I felt tired waiting for one.
The thing about change, I was beginning to realize, is that it has a lot to do with you (me) and less to do with crossing your fingers and waiting around for it. I admit, for a long time in terms of the illness, I did that in a certain capacity. I’ve hoped and prayed for a cure ever since I became sick, but I was never involved or deeply curious in the process of how that could happen. I wasn’t a part of online support groups for ME/CFS. I was never really involved with advocacy, and I didn’t follow the latest research or science. Sometimes people would send me articles from The New York Times or some Magazine that would tell the story of someone sick, usually summarize the history of CFS mostly on the surface, and then reveal the prognosis, which was that there was still no cure and no approved treatments. Once, I was sent a New York Times article called “Chronic Fatigue Syndrome No Longer Seen As ‘Yuppie Flu’” You’d think in some way, a major and respected newspaper validating your disease would be a comfort, but to someone who’s been suffering for years from it, it was more like Yeah, no shit. It’d be like seeing an article titled “Water Found to be Necessary for Survival.” My mom, who follows every study, reads up on trials and new findings, would update me often in an optimistic tone. But I can remember, in the first year after the crash that I’d stopped working and was living in their house, I felt angry and remember telling her I didn’t want to know about any more studies until there was one that found the cure. I was clearly still in the “acceptance” phase of this whole thing, and that was a prissy reaction to say the least, but I just never wanted to get pulled too far into the “community” of the illness. I felt if I entered in too far, which would be easy to do, it’d take me over, consume my identity. And I battle myself a lot in avoiding that transition–I don’t want to turn into the ‘sick girl.’ There are just so many other things I want to do and express, and sometimes the illness feels like it controls too much of my outer life, after already having control of my insides. It’s a strange, duplicitous struggle to face. And some days I feel like the illness wins–not in terms of my body, but my mind. That’s what I try to avoid.
Last week, a news crew was at my house. I say crew, but it was really just two people. An interviewer and a cameraman from Fox8 News New Orleans. It’s funny how it all came to happen, but stars aligned in certain ways, and now news-anchor Rob Masson was interviewing me in our living room. We talked about the petition, about getting sick with this weird, elusive, invisible, strange disease. He was a great interviewer and he understood the illness well. You can tell when someone gets it by the questions they ask. For instance, a person who doesn’t get it asks questions like “Do you think if you did more during the day, you might sleep better at night?” And a more intuitive person might ask “So how do you prepare for an event you know is coming up? And how long do you pay for it physically?” Rob and I had talked already on the phone about the disease, the NIH, the history and the campaign for nearly an hour a week before. Then the day of the interview they ended up staying two and a half hours at our house. (It will probably be a two minute spot) They spoke with me, my mom, and shot footage of Monty, of course. . Normally, the idea of “being on the news” even local news, would stress me out. Mainly because internally I’d think “Why do I have any business being on the news? I’m just a sick person living with my parents?!” But the reassuring and truthful answer was that this really wasn’t about me. I’m an example of one among millions of people living with the disease, and I felt I could speak up for it in that way, provide an example of what it “looks like”–which is nothing. You couldn’t pick a person with ME out of a crowd, but it’d probably be the one lying down using some odd piece of furniture as as a bed. I was/am exceedingly grateful this petition made the news, mostly because I think any press that shows what this disease looks like and is told from the angle of someone who is actually sick, not a psychiatrist speculating about it, is always a good thing.
But the real angle was the campaign, which is also not about me, but about the NIH, and how their lack of funding and research has left millions of sick people without a place to go. You can count the number of CFS specialists with one and a half hands. The reason I felt optimistic writing this petition is that this is a problem with a very clear solution. It has always had a solution, and in every article, blog, comment debate, news story, I see the same desperately needed solution being pointed out, which is funding. The disease is complex, the research and studies and science is complex, but some of the top virologists and infectious disease specialists in the world are signed on to study this, say they can solve it, they are simply lacking the funds. It just seems so simple in that regard. It’s obvious this can’t be ignored anymore. This is an epidemic, and I know that word is overused a lot, but when millions of people are out of commission, and the country is paying billions a year in lost productivity and medical expenses, I would call that somewhat of a health crisis. So, it’s time. And Mr. Collins and Secretary Burwell can make it happen. I know they can.
I’m still learning how to be an advocate. I don’t know if it’s really my calling. My sister on the other hand should consider this as a career option, she’s really good. :) I’m still trying hard to attain more signatures because I’d like to get as many as possible for the protest on May 25th in DC. The power in this method of “protest” is in numbers, so I’m still thinking “Hey, we can make it to 35. And if we can make it to 35 we can make it to 40!” 40,000 has a nice ring to it, a more sturdy number. Anyway, I trust we’ll get the number we need. And I still have the hesitancy of not letting this fight, win or lose, enter too deep into my identity. In my attempt to share the campaign with every CFS organization, I’ve sort of leaped into the Chronic Illness Community…and everything there makes sense. I see myself in all the stories. I recognize the descriptions. I understand completely what people mean in their emotions and discouragements. But sometimes I have to just dip a toe in..share the petition and then get out. If I spend too much time there, I don’t know, I feel too consumed by it. And those are my brothers and sisters! It’s not that I’m turning my back on them, I just live it and write it enough as it is. I guess I don’t need reminders right now. I’m more hungry for change.
This petition I hope can speak for us all. Maybe I will just always be fighting to remember who I am, to hold on to some remnant of myself that was there before I ever became ill or ever started “fighting for a cure.” In one part of me, a flame has been lit and I feel ready to take on the world and achieve this change. Halfway because I’m bored of it. It’s so obvious what we need to do, and I know it will happen eventually, I’d just like it to happen sooner so we can all get on with other things. The other part of me thinks I can write through the filter of being sick till the cows come home, but there’s so much other subject matter out there. There’s so much else to do. And I want to explore it all. There are so many other stories I want to tell. And I think I will. I’m just a little in between worlds for now. Fighting for this cause and also trying to stay conscious of who I am without all of this. Dive too deep into anything and you can get stuck there. Maybe dive is the wrong word. Attach. I don’t want to become attached to this. I want things to change. And then I want to travel to Japan.
So, that’s what’s happening in my neck of the woods. Physically I feel like absolute crap, which is the most efficient and motivating reminder to keep fighting for this change :) I don’t know when the news segment will come out, though I can already anticipate my self-consciousness about it. I don’t like seeing myself on camera or hearing my own voice. I am fat from the steroids and hardly even feel like I’m in my own body anymore. And it’s a vulnerable thing–I never imagined I’d be interviewed by someone and talk about being sick, 31 and living with my parents on TV. I mean, this could really ruin things for me on Tinder. But the TRUTH is, none of that matters. It’s not about me or my story or whatever I’ve lost along the way. This is about the campaign and what’s next. It’s about what we’re asking for, which is a very specific thing: $100 million bucks. It’s not that much money, come on! But, if the segment goes online I will try to post it here. So, once again, I will shamelessly post the petition, and if you feel like signing or sharing because you haven’t yet, I recommend you do so I can stop writing about this stuff and my sister can stop pestering every person she knows to sign it. Amelie, I love you. Thank you again everyone for the love and support and signing. I guess that dotted line I envisioned making a sharp turn ended up happening in a very strange way. Life is funny.
Health, Happiness, HEY MOM IM ON THE NEWS!
OK, so I can’t actually link the above image that says CLICK HERE TO SIGN to the page where you would actually CLICK SOMEWHERE TO SIGN. Blogging problems amiright? In other news, you can click here to sign.
If you haven’t heard, I’ve begun a campaign on change.org. I’m petitioning the head of the National Institute of Health (Francis Collins) and the Secretary of Health and Human Services (Sylvia Burwell). If you have heard, and you probably have because I posted it everywhere for a while there, I do apologize for the redundancy. But for the first time, it seems like the right people are at the helm of the organizations that can immensely influence the potential for way more research (funds) for ME/CFS. I’ve written previously about the shaky if not scandalous history of this weird disease and the mishandling of it (i.e. neglect) on a federal level. As a result of being dismissed and grossly underfunded for so long, treatment-wise we are exactly where we were back in 1987. That was the year my mom got sick, when the disease was hardly even heard of. But it’s a new age, and there are a lot of people fighting out there, and this is just one more way of attempting to be heard, influence important change, and help increase awareness. Plus Monty pressured me to do it.
I’ve never thought of myself as an activist, and I still don’t really, but for the first time I’m feeling the strange pressure to make something happen. Anything. I wrote the campaign on a day when I was feeling really sick but also really hopeless and discouraged. I thought, I can’t sit here and feel bad about this anymore. I had to try. It’s interesting because on one hand, I can’t rely solely on the discovery of a cure to make me happy or my life complete. I forget that even healthy people have a hard time. Life, as discussed and agreed upon with most friends and family, is just really effing hard. It just is. Even if by all accounts you have everything one would require to be “happy” or feel whole. It’s so easy to just assume that everyone else has all their shit together–that they’re drinking champagne on a yacht somewhere with good looking friends and laughing, or having family day in the park with their soul mate and three perfect children. Is that a thing? I don’t know.
But I’m guilty of this. Many times when I’ve felt deeply the challenges of my experience, I’ve felt even more wounded by the idea that the rest of the world is at a party that I’m too sick to attend. And that is fantasy. Sure, there are definitely people out there who have it way more together than me and are probably experiencing more joy than I am in the current era I’m going through. Even so, health, marriage, children, careers–these don’t necessarily equal happiness or fulfillment. Everyone is carving out their own unique path through this chaos, discovering who they are and hoping to live a good life they can be proud of in the process. I’m not positive, but I think “happiness”, or maybe I should call it “inner peace” or contentedness, develops when you are operating out of your true self, that inner person that we catch glimpses of when creating or carrying out our passion or holding the hand of someone we love. It can be anything, but I think there is person within all of us, a 100% unique super-person made of ultimate consciousness that we’re all striving to become. And when we follow the whispers of that super-person, it feels right. It feels stable among a lot of instability.
As I grow older, I think the biggest revelation I’ve come across is that everyone is figuring this thing out as they go. They’re putting on their pants in the morning and going to their job or raising their children or poaching an egg and some part of them has their fingers crossed that they’re doing it right. That they’re doing what they’re meant to. And somehow it can easily seem as though everyone else knows absolutely what they’re doing, where they’re going, and how they’re getting there. But even these people can’t be completely certain. There’s no real way to know, no standard form of measurement that says yep! you’re doing it right! We’re all living this particular round of life as each of our weird selves for the first and time. All we can do is our best, and follow that invisible thing that usually presents in the gut, telling us to turn left or right or that you’re talking to a crazy person or to get the hell out of some place. There’s an inner compass there, and we probably don’t listen to it enough.
My “path” the last five years, which continues now, has been finding a balance; finding a way to manage and tend to this illness and still construct a life that I like; one where I can sustain loving relationships and do some good and make a meaningful life I can be proud of. The balance is also about not letting my life or identity revolve around the illness. This is hard because truthfully, it effects everything. It just does, it should be called Pain-In-the-Ass Syndrome because that’s what it is and you kind of become one out of necessity. But I know there is a way to use it to become someone better without letting it define me or my life. I know in order to grow and become the most conscious, full version of myself means experiencing every last drop of what is thrown in my path, including the insanely hard stuff, like life-altering illness. My mom reminds me of this when I get really down. Try to take everything you can from this, because these are the unique teachers that help shape who we ultimately become. And it matters that we grow into ourselves, that we become who we’re meant to. Otherwise we’d all be born with the same talents and passions and personalities. We are so awesomely diverse just to begin with, innately, and our experiences through life are even more unique, and this is what informs our distinctive selves for the better, if we engage it whole-heartedly as an opportunity to grow into who we’re meant to be. I don’t write that as though it were something easy. It’s one of the hardest things in life: to accept pain and struggle with open arms and surrender to it as a pathway to being better, more conscious, to living a more fulfilling life. Maybe that’s how to know if you’ve done it right..if you ring out the rag of your life at the end and not a drop comes out.
This post was meant to simply re-post the campaign, but it’s been a tough few weeks mentally and physically. What am I saying? It’s been a tough year. And there’s always words that need letting out. Otherwise cobwebs gather up there. Anyway, last week there was such an amazing response from family and friends, (and total strangers), to signing and sharing the petition, and that was truly humbling. I cried. Like a lot. I don’t know if this will work. I don’t know if it will get enough signatures to get the attention of important people. I just know I felt an ache on a particularly hard day that craved a bigger change and I had felt it for a while. So this was a place to start. I also wanted to remind people suffering out there that there is a lot of action being taken toward working with these agencies and finally getting the support and attention that the disease has needed for so long. Don’t lose hope. We WILL get there. Wherever there is. The good news? We surpassed 1,000 signatures! What does that mean? Technically nothing, except that 1000 people took the time to sign it and comment and share, and that is an awesome feat in itself, and I hope we can keep it going. I will post the campaign again here, and maybe find a better spot somewhere on the homepage where people can sign. I’ll figure something out. In the meantime, let’s all put on our pants, (or PJ’s if you’re sick) and pretend we know what we’re doing. In other words, let’s try. I have to remember to try. And you do too.
And then sign the campaign. Pants not required.
Thank you, thank you, thank you so much to everyone who has signed and donated to help circulate this campaign. I think my sister is responsible for half the signatures herself that she reached out for. She’s a better campaigner than me, maybe I should hand it over. Thanks Amelie! And thank you to all of you. It truly means so so much, every single signature. I will of course keep everyone updated. Mostly, I’m filled with humility and gratitude for all the support my family and I have received. Keep it going guys, I can’t tell you how thankful I am, except I just did and I’ve said it 10 times now so I’ll stop. But it’s really nice for people to feel that their voices have been heard, especially sick people who can’t get out there and fight, and I think this campaign is a way to facilitate that. OK ENOUGH TALKING GOD. Here it is. Sign it for Pete’s sake!
Health, Happiness, Pants
Below is the link if you’d like to copy and paste the campaign to send in an email. Otherwise, just click here and sign it. Thank you. I love you. A lot.
What is it about Winter?
Post-Holiday Winter, I should specify. It’s wearing on me. Draining and uneventful, this window of time moves so slowly it all starts to feel static. The date keeps changing but there’s nothing I can point to as proof of time passing. When I think back on it, this “leftover winter” has gotten me down in the past, too. It reminds me of the day after a night of drinking in college–hungover days where things on the outside are idle but there’s some invisible pressure that I ought to be doing something, anything, other than what I’m doing right now. But what that thing is I can never name. It may not even exist. I hold the colorless weather outside at least partially accountable. Winter is haphazard in New Orleans. Nothing sticks long enough to adapt a routine or wardrobe to. It goes from freezing and wet one day to weirdly humid and warm the next, but something about the sky, the whole atmosphere out there–it’s this oatmeal-hued environment that either mimics my insides or my insides start to mimic, and for whatever reason the affect is restless and un-motivating. It feels like weather that’s waiting on something and the ansi-ness rubs off on me. Then I find myself in this counterintuitive disposition of mostly-optimistic anticipation that something of note is going to happen in my life, mixed with that physically paralyzing effect that comes with a heart-ache depression. It’s like I’m sitting in a car all packed and ready to embark on some adventure with road-trip snacks (Gardettos) and a map, but there isn’t any gas in the car. So I just sit in the driveway, snacking on Gardettos.
One of the more confusing results of all this is that I can’t tell what direction I’m moving in. I realize that life and time pass in one way only, but somehow I don’t feel like I’m moving forward. Things are feeling stagnant mostly. And on really tough days they feel backward, a distorted Ground Hogs Day reality where I’m living one day over and over but I’m doing it worse than the day before. I notice during times like these, Oatmeal Winter and Illness at the Helm, one day can easily feel exactly like the one before it, and when I think too long on it, I can’t totally distinguish between the two. Or three or four. Of course it’s pretty easy for me to point my finger at the weather while this other important truth remains that I’m really sick right now–that I’ve been really sick since that crash the day after Thanksgiving and I haven’t really been able to recover. I guess sunny or not, this will get anyone down, even the most seasoned of sick people.
Being sick for months at a time poses an interesting creative challenge. Since you can’t often achieve a change in scenery, which is a widely agreed-upon method to upping ones mood, you have to find ways to see yourself and the world around you in different ways and with new eyes. This is really hard to do. Especially since there’s been such a distinct and relentless sameness to everything given the weather and my health and yada yada. It probably explains why I chopped eight inches off my hair, which helped, actually. But consciously I realize that becoming bored by your surroundings and state of being stems from a lack of proper perspective, and not a failure on the part of the universe to remain exciting. Everything around us is constantly changing, if even at a rate that is undetectable by our human eyes, and every day we wake up and live through is completely unique, never once experienced until now and impossible to ever be duplicated again. When I think about the fact that you never get to live the same day twice, it’s actually a comforting thought. Usually when I feel that I’m in some time warp with my struggles or misery or boredom on repeat, it’s because my vision has narrowed far too much and I’ve lost the horizon from my line of sight. Marc Nepo says “It’s the giving over to smallness that opens us to misery,” and I think that applies here. He says later “Misery is a moment of suffering allowed to become everything.” What a truth bomb. I think I read that line five more times after I underlined it twice. I know that when my focus zooms in purely on what is hard, the scope of my experience is cut in half, at least. This is why gratitude as I’ve come to understand and cultivate it is so immensely powerful. It wisely keeps and protects the good things in your life within your consciousness, within your line of sight. And it’s so incredibly true that the times when I am most unhappy, I’ve become lazy about remembering what I have, which is a lot. It’s not to say you can’t be conscious about the hard things or honest that they’re challenging or depressing. If you don’t express acknowledge these truths, the gratitude doesn’t have a chance to be authentic either. You have to be honest about both. But that’s the key, acknowledging one without forgetting the other. Grasping them both helps keep a broader and more accurate picture of your life within view.
Maybe this is a bit of what Nepo means when he talks about being a Spiritual Warrior–which sounds fancy but is definitively humble.
“All Spiritual Warriors have a broken heart–alas must have a broken heart–because it is only through the break that the wonder and mysteries of life can enter us. What does it mean to be a spiritual warrior? It is far from being a soldier, but more the sincerity with which a soul faces itself in a daily way. It is this courage to be authentic that keeps us strong enough to withstand the heartbreak through which enlightenment can occur.”
This was both comforting and angering to me. Angering because I think, why can’t the enlightenment come through cracks that aren’t caused by heartbreak and struggle? But this is a larger philosophical point. I think a more evolved species will be capable of this in the future–achieving higher consciousness and peace and gratitude without having to endure loss or pain or heartache to see it. But at this point within human evolution, our condition is still adapting. We haven’t caught on to the larger things yet as a whole. Think how bad we’re still blowing it. As removed as I feel from some of the real evils of the world and humanity, I don’t have to look very hard or long to see humankind missing the mark, in big and small ways, all around me, and that includes me and the seemingly petty ways I do this in my own life. Just because I can point my finger at ISIS and project all the evil onto them doesn’t make me superiorly more virtuous. What we see around the world are manifestations of evil that exist, if even dormant, within all of us. But I’ve wandered off-road again.
What’s comforting in Nepo’s words is knowing that our work ultimately is to become who we are at our center. And it’s funny how simple this task appears but how insanely hard and rare real authenticity is–being honest about our weaknesses, our beliefs, our limits, our expectations…It’s not as easy as I’d hope. And yet any time I face a truth about myself that for a long time I either hid or denied, I always feel stronger after having confronted it or shared it with someone I love. Even admitting the extent to which I was/am sick and the limits it places on my life is a challenge, even though totally obvious to an outsider. And I think this is why authenticity is such an important ingredient he includes in being a warrior–I don’t think it means knowing exactly who you are at all times, if anything this search feels like long–maybe it’s more the reverse: slowing peeling away who we aren’t until we become condensed, perfect little vessels of our true self. I think he’s also alluding to the idea that you can’t be conscious and inauthentic at the same time, and since ultimately we’re seeking whole consciousness, it requires in small ways along the path to acknowledge and cultivate the true self, while diminishing the layers that are not real.
The reason it angers me is because this formula is what I confront when reading all the spiritual masters and mystics and artists for thousands of years, and so it’s a clear truth that has persisted through the centuries–that it’s through hardship and pain that human beings seem to achieve deeper consciousness. Or at least, it is through this pain or suffering that we have the opportunity to grow and evolve consciously. It’s very easy to use pain as a reason to stop trying, and I’ve certainly done that a good number of times. But the most amazing people, those who seem to get it, those who appear to be made of peace on the inside and who exude joy outwardly and live their lives with creativity and virtue and light-heartedness, are not people who were given easy lives and thus are happy. They have all endured exceptional pain in their own ways, and have all found a way to use their most challenging of experiences to propel them forward, up, larger than their circumstances. The pain is still real inside of them, accessible and observable even to those on the outside–its not that they eradicated it, but somehow turned it into the material that would make their life good, whole. (See an amazing example of that here) They didn’t eliminate it, but they also didn’t use so much of it that their life was made up purely of struggle. This is another exploitation that’s easy to pursue with ones pain– using it as a platform for identity. The point, obviously, is not to become the pain, if we’re trying to transcend it. Wallowing in our own web of misery is an easy way to garner an audience but also to never evolve. To avoid consciousness. What I was trying to say when I began this thought of why this truth angered me, is that I wish human consciousness could evolve in easier ways than through pain. Of course, there are many other teachers that develop our soul and psyche, love namely, that aren’t as challenging as say something like, an invisible disease that pulls the rug out from under you. Everyday. :) But the truth is, the things which have taught me the most, shown me the gamut of human emotion and contributed to further compassion, kindness, capacity to love and ultimately consciousness on my end, have been these very deeply painful and trying experiences. And so I know that it’s true. And I know it’s vitally important what you choose to do with your pain or heartache, because not working to put it toward growth, gives it the power to swallow you up whole. It takes away from you, gives you a reason to be bad, to stop trying, to give up on the world. And that’s the truth– I say it because I’ve felt these things in the past in reaction to the tough experiences in my life, not always directly after they happened either. I still struggle with it. And it haunts me how easy it is to let those experiences take the wheel and drive me to unhappy places. Luckily we’re not powerless to pain. We have choices to make.
In a different way, using the pain to define your self, or wallowing around in it but never moving on from it is another struggle that I have to stay keenly aware of. I have a whole blog that is named after a damn disease that I am also trying hard to not let define me. It’s a huge part of my life and my story, but I have to keep it from growing so large that it takes up my whole view. I don’t want illness to be my only avenue for expression or creativity, and I definitely don’t want the art and work that I do pursue in the name of it to be all sad or negative or heartbreaking. Of course this isn’t always easy to do either, because writing about your health good, bad, or ugly, is naturally going to include parts that are bad and/or ugly. There is a lot of that in a life with illness. And my point when I began this project so long ago was to accurately portray what life with chronic illness actually looked like, since I’d confronted so many misunderstandings and false beliefs about it from people in my own life. Obviously some writing stems from hard days and dark feelings, and if you’re going to tell the truth, tell the truth. The point was to have a space where I could be honest and not polite for the sake of peoples small-talk comfort. BUT, the point I have to keep in mind is that illness is just one part of my life, and while it can feel like it defines so much of what I do, it is still just a part, but requires me to keep it right-sized. It’s only when my perspective zeros in on it do I lose the whole horizon, which are the amazing people in my life that I love so much and who love me back, the incredible house I live in, how happy my dog makes me every time I look at him, how lucky I am that I was given the gift of writing and this is one thing the illness hasn’t taken from at all. In fact, it’s what gave me a voice on this very medium. Hey look at that, the clouds are parting.
Winters are tough. They seem to be that way for a lot of people, North or South, sick or well. It’s easy to look around and see the same thing everywhere you look, because details are small and we’re usually too busy or too certain to stop and look twice or three times at things before we see the wonder in them. I know that during times like these, my life becomes very small because when you’re sick and weak like this, you’re constantly breaking everything down into smaller pieces so you can digest and complete them. You know how during hard times people will say “Just one day at a time”? Well during days like this, it’s really more down to a moment by moment basis. Mostly because each tiny little movement requires so much more from you than normal. It astonishes me how hard the simplest of tasks become when your body feels like it’s made of lead glued together with honey. It’s not just Wake up and make the coffee! It’s OK, sit up in bed. Ready? 1, 2, 3, sit up. Why didn’t you sit up? Try again 1, 2, 3. Come on, you can do it, just a little more, OK! You did it! We’re sitting up. Now, turn to the side to put your feet on the floor and stand up slowly. Feet on the floor, ready? Here we go. OK, feet are on the floor. Time to stand up. Heeeeere we go, and we’re dizzy we’re sitting back down again. OK, catch your breath. Breathe slowly. Calm down heart, all we’re doing is standing here. OK, try again on 3, rise slowly this time. Ready? 1, 2, 3 and we’re going to stand up. 1, 2, 3, we’re standing! Now, 12 steps to the kitchen, you got this, 1…2…3…
The kitchen is super close to the living room and my couch, and so sometimes I have to make a stop-off there first, which is perfectly portrayed in this cartoon by another blogger with CFS.
Anyway, notice the minuteness of each of those moves? I’m not exaggerating. This is simply what Bone Crushing Weakness does. Tasks this small shouldn’t require being talked through like you’re in a danged boxing match. But what can I say, it must be evolving some part of me so I can be the best of the best Spiritual Warriors ! Or just a normal 31 year old who gets out of bed. Either way. I think it’s this breaking down of things so they are doable is also what makes life feel so un-doable sometimes, because it all feels too big, too much, too long. Like I’ll never be able to get on top of things. But I know it’s because my vision is off and I have to be proactive about seeing my life and even these sometimes painstakingly long days against the larger backdrop of the world, of eternity, of the whole web of human existence. I find relief in seeing my life as a small spec within the largeness of our universe. I didn’t always feel that way, but now I know it means that enduring challenges come to an end. It means I am just one of many kajillion working parts and lives. It means that while not everything is up to me, the essential parts are, and I’m here because I’m capable of achieving them. I have to remember that as much as I can convince myself and be successful about it, I am not alone. That thought isn’t real. And my life is not impossible. And all of this, including colorless winter skies and lacking motivation and bone crushing weakness, will end. And I’ll look back on it one day, as the pain that moved me forward and opened the door for great things to happen, not as a shit show that ruined what could have been a good life.
Health, Happiness, Perspective
P.S. If you want to see one incredible example of taking tragedy and hardship and turning it into Greatness, watch Mayou Angelou share her life story on Master Class. It’s one of the most inspiring things I’ve seen, ever. http://cms.springboardplatform.com/previews/3405/video/937187/sfta001/
I really, really need to bathe. Let’s start there.
Why don’t you take a bath Mary? Great question. I’m running on fumes, that’s why. I’m not just low on energy but also have that Bone Crushing Weakness going on, and it turns out the whole “cleaning-up” process requires much more exertion than you’d think. And you wouldn’t think about, because it’s not something you think about when you’re well. When you have a steady supply of energy on tap. A shower is just a precursor task on your way to doing other things. When you’re chronically ill, showering becomes the thing.There is no after. No next. To Do List: Bathe. End of to do list.
Not until I was at the mercy of illness did I understand the physical toll of hygiene and general appearance. This is mostly the reason that when I’m not out in public, I look like a deranged, color-blind Craigslist Killer. Just to give you an idea, besides my obvious and immediate desperation for a bath, I am currently wearing these green-striped pajama bottoms with mis-matched socks and a Hanes His Way V-Neck white t-shirt. This is actually one of my more cohesive looks, except that I ate a pomegranate last night and the dark crimson juice has splattered all across my chest. Did that motivate me to change my shirt? No. So now not only am I dangerously close to exceeding the point of no return in terms of lost humanity due to lack of cleanliness, but I also look like I’ve been bleeding, or that I made someone else bleed, which adds a concerning urgency to whatever it is I have going on right now, but I still can’t be bothered enough to do anything about it. So I just go on living my life and all this has really upped my game in terms of just how insane I can look on a Wednesday without really trying at all. Some would call that impressive! Anyway, I’d love nothing more than to do my laundry and my hair and alphabetize my life and put on a dress just for fun, but I can’t. Not at the moment. And it still surprises me how seemingly simple and small things start to become large and exhaustive, all on account of health. Not until you’re straining to stand at the sink and overwhelmed by the exhaustion you feel just having to move your tooth-brush up and down, or discover that your arms and hands have turned to rubber after using them to lather up the shampoo in your hair, does it hit you just how costly all these little moves are. Not until the smallness of previous, everyday tasks suddenly reveal their enormity do you fully appreciate how much exertion it takes just tending to this business of being alive– and this is before you even go anywhere or do anything! It’s silly really. Still, this does not change the fact that I really need a bath and if I go one more day without one I fear I’ll reach an irreversible state of unclean and I’ll never get it back. I’m also sort of hoping that by sharing this very inappropriate and vulnerable reality with perfect strangers and a few friends on the internet, that perhaps it will motivate me, give me that final ‘push’ to take the plunge, even though my whole body feels like the human equivalent of mashed potatoes. Mashed potatoes with death gravy!
I open with this unremarkable and embarrassing truth about my life because I think I’ve become a little too serious about the outcome of my writing in the last year or two and I’m trying to remember the importance of light-heartedness. And humor. I’ve noticed I put an extreme amount of pressure on myself to produce posts that are equivalent to biblical scripture, instead of remembering that this is a blog, a documentation of a small silly life, and it doesn’t always have to read one way or another. I find that way too often the writing doesn’t meet my expectation–which isn’t even anything specific, it’s simply a personal note of “It could be better.” As a result, I scrap a lot of work, I start over, or I just abandon it halfway thru. This is not a smart or productive way to go about any art, so I’m going to try to stop doing that and also remember to have fun. Oh yeah, fun! I forgot about fun! Usually the things I really enjoy writing are the things that people enjoy reading the most. It always translates. Too often it feels like extremely tedious work, which I think it has to be sometimes, especially if you want to always be improving the quality of your work, but more often it should just feel good. There should be some amount of recreation in it–this is my passion after all. I do it because I like it and it makes me better. Too often the process feels like taxes. So, I’m trying to remember to enjoy the process and the outcome, and also that not every word I write has to be a thought-provoking useable quote to put by my name after I die. “I need to bathe.” -M Gelpi, 1984-2016.
It’s been kind of a stupid few days. For one thing, I’ve bit my top lip no less than four times while eating. It frustrates me that my mouth is this stupid and that it doesn’t learn the lesson faster. Is it really so hard to GET OUT OF THE WAY. I think, I am 31 now, I shouldn’t have to explain to my gums that hey, when there’s food in my mouth and my teeth are moving up and down? Do you think maybe you could stay out of the way? Not a big deal or anything I just don’t want to EAT CHUNKS OF YOU and also I don’t like the taste of blood. With anything. So maybe stay clear of my teeth now? Great thank you. Glad we had that totally necessary talk. Now maybe I’ll tell my head to stay out of the way of my fist when I’m punching stuff! Hah, who am I kidding, I’m too weak to punch things!
What else? Oh yeah, I’m starving. I never mentioned this before but I’ve been battling an addiction for a few years now: it’s sugar. It’s very real!! So I basically eliminated all processed sugar as of Sunday, and it’s getting easier I guess. But even it being easier doesn’t change that it’s still ridiculously hard. And half the time I think the answer is, don’t diet. If you’re addicted to sugar, just stay addicted. Get fat. Get diabetes. Die young. This isn’t worth it. A cupcake would make me so happy right now, why am I denying myself this easy promise of happiness? Why am I making life this much harder on myself? Kiddingggg. But truly, I was addicted. Am? I think I still am, I’m just not feeding the beast. It began shortly after I began the corticosteroids–my appetite, my cravings for sugar, and my intolerance for it all simultaneously exploded at the same time and only got worse with time. I also became extremely hypoglycemic and would wake up in the middle of the night starving and shaking. I knew at some point I would have to do something drastic, not just because I was clearly addicted to something I didn’t even used to like, but my body was also rejecting the very thing my brain was craving. So many of my migraines occur after eating something sweet, typically processed sugar. Not to mention, there is just way too much junk in my trunk now. And also under the hood, and the front and back seats. Mostly, I just feel totally out of balance. I don’t like my relationship with food anymore. I used to just eat when I was hungry and then not really think about it. This whole sweet tooth thing is exhausting and also never-ending. I literally never feel full and I’m bored thinking about it all the time. So it was time to quit. Right now I’m just trying to get used to feeling mild hunger or major cravings but not immediately shoving food in my mouth as a response. Especially when I’ve already eaten a healthy meal and I know I’m not actually hungry. It sort of struck me, this totally 1st world moment of enlightenment: Oh yeah, I don’t actually HAVE to eat just because I feel hungry. I literally forgot that I have that option: NOT eating. Only an American would forget this, I’m convinced. So that’s going well. Wait no actually it’s really hard and taking a major adjustment but whatever, it’s in the name of being healthier and I can get behind that.
This morning, I was lying in bed and trying to find the motivation to get out of it, my eyes scanning the room looking for something inspiring to land on. Window. Wall. Dresser. Monty! Then I thought hey, I’ll just lay here and talk to Monty. Sometimes I share my ideas out loud with Monty because NOT EVERYBODY HAS A BOO WHO WANTS TO HEAR THEIR COOL TAKES ON LIFE. And I was like Monty, don’t you think it’s kinda dumb how hard life is? I mean if we were talking about Life Round 2, like if this one were a dress rehearsal, I would pull for “Less hard stuff, more funny stuff” in the next one. I just think the script is calling for more humor, more casual fun. It’s like the architect of the universe was listening to a playlist and when he got to this part, Coldplay got stuck on repeat and so there was a somberness infused into the day-to-day to stuff. He needs to listen to Pharell, or better yet, the band Fun! They would mix it up in a positive way, I think. And I’m sharing this with Monty thinking this is pretty good stuff, and what does Monty do? But abruptly start licking his butthole. As if the house was going to collapse on top of us both if he didn’t do it at that exact moment. Right in the middle of my Ted Talk (more like BED TALK) about how life should be tweaked for the next go around. At first I was like OH REAL NICE MONTY but then I was like God, who am I to make you feel bad about this? It’s probably the shitty food I give you making your butt itch, even though it’s expensive as shit. This country has major food problems, for dogs and people! Whatever I mean that’s what they say.. I don’t really know anything about it.
I’ve been writing this dedication piece on gratitude because despite my life looking and sounding like a disaster, it’s actually great in a lot of ways and has some really amazing parts and people that I am crazy grateful for. I’ve been writing it for weeks, in my normal tortured way, and there’s some good stuff there, but I think I just need to calm down. The piece is not just about saying thank you to the many, many people who have reached out and offered help to me in so many different ways this year, even though they are who inspired the piece. It’s more about the new and intimate way I’ve come to understand and appreciate gratitude in my life, which began with me recognizing gratitude during parts of my life that I wouldn’t traditionally say thank you for. There were extremely tough moments, days, and months this year. And yet somehow, there would be these redemptive moments within the pain, where I felt grateful for the exact experience, even if it wasn’t enjoyable or was causing me pain. This was never traditionally my approach to gratitude. I said thank you when I recognized that something was good, and there were always plenty of good things. But there was a whole new light shed this year, particularly during this winter which has been challenging in a number of ways, and yet the struggles still managed to produce these amazing moments of love, kindness, help, laughter, friendship..all in the midst of what I’d normally consider “disaster.” I write about it because I am continually surprised and amazed when I feel gratitude sneak up on me inside–I’ve been blown away by its reliability regardless of whatever scenario I find myself in. It was always easy to say thank you when everything went my way. But it’s been a new and enlightening experience stumbling upon it even when I’m lost or isolated or feeling totally discouraged. That’s changed how I look at everything now, and it really lightens the burden of whatever I’m carrying when I remember to try and find it. Anyway, that’s what the piece is about. Hopefully my brain will stop screwing around and I’ll get it cranked out sooner than later.
In the meantime I want to say that while I don’t always feel worthy of the love, help, gifts, messages and prayers that are offered to me by so many people, I do constantly feel incredibly grateful for the support that me and those who care for me have been given. Every way I’ve been helped or encouraged, no matter how small it may have seemed, always presses me to be better and to try harder. All we can do is our best, but being loved and supported the way I have continues to raise the bar for what my best can be. Thank you! All of you. My life is a perfect example of how needing help can be a really beautiful thing and not something to be afraid of — it teaches me to trust in humanity and to humbly surrender and accept what I can’t control, and I think to the giver, it teaches grace and encourages kindness. Somewhere in the middle is gratitude for us both.
I think I feel encouraged and insecure enough now that I’m going to attempt to bathe. Thank you for helping me.
Health, Happiness, Hygiene
Oh hi world, I didn’t see you there. I haven’t seen you in weeks in fact! I’ve been in involuntary hibernation since Thanksgiving. Pardon me, I was knocked out.
This crash has been intense and I’ve been writing my way through like always, trying to understand it better. But this time I tried much harder to accept and approach it without the need to fix or change it. Without “fighting back.” I want to be clear that I’m not writing to answer the question of Why me? I’m not in that stage anymore. So I’ve tried to create a surrendered space to talk about it, where it’s regarded as part of the plan, where there’s no sense of unfairness or despair about it. It’s simply a fleeting, physical state that I’m meant to endure and examine closely among probably many other physical states I might encounter in my lifetime. I’ve tried to adjust my whole response to it, which has been more of a lack of response, or reaction, and more objective observation. Life between stimulus and response. Being sick and being OK with it, not attaching the personal, the story, the woe-is-me. I applied this approach to both my writing and my perception of the illness in real time, which has been interesting and challenging and often extremely helpful.
But I’ve sort of been a tortured artist with the writing–I keep editing and condensing and re-writing. I feel the angst that it’s never quite right, that there’s a concept just on the edge of being conveyed, like a mathematical equation I’m on the verge of solving. So I’ve once again ended up with 7000 words scattered across 3 notebooks, my iPhone, my computer, and one business card. Most of it has been exploring the same topic at different depths, and while some of it is good, I realized it’s just not meant for this space right now. Not to mention, my brain feels inside out lately–I’m a little fuzzy cognitively and I can’t gauge it. I’m either buzzing or stunted. But I’ve continued trying to make my words achieve what I feel inside and what I want to convey, staying very conscious about my intentions, which are that I don’t just want to write about being sick and my experiences simply because they’re true and they happened. I don’t want to start and stop at pain. I’m well aware of the danger in that. So I’ve been tinkering with these concepts, some of them seemingly contradictory: diving in deep into the experience where I can feel it completely, while also regarding it from a distance where I can see it inside of a larger context–which keeps the illness right-sized. I can recognize it as a part, and not a whole. I’ve gotten pretty close to finishing it, I think. But it’s been arduous and probably redundant and my mind is still spinning, even as I write this now.
Anyway, I’m going to start from scratch today and try to relax about the outcome. A good friend said not to worry about lengthiness, just to keep writing and trust that if people don’t want to read it, they won’t. That’s so true, duh. Thank you friend, I’m just going to write some broad things out, and whether good or bad, hopefully open up some space in mind for some fun topics, like my exploration of Hallmark and Lifetime Made-For-TV Holiday movies, and also a note about my 12-foot real Christmas tree that refuses to drink water. But it lives on!! Tiny miracles.
My health was already on pretty shaky ground leading up to the Holiday. Thanksgiving Day was great, ate good food and had some fun reunions with old friends, but it was long and cumbersome. I could feel myself subtly hitting physical limits along the way, but I pushed on anyway. (I include the socializing that happens as part of the exertional strain, even though it’s enjoyable, it always costs me something physically the next day.) It was a Holiday after all, and I could sleep it off tomorrow, I thought. Unfortunately, I was flattened–handed over fully to the illness overnight while I slept. I woke up to the dreary and unfamiliar light of 3:30 pm pouring into my room on Friday. It disoriented me further as I felt an overwhelming weakness blanketing every part of my body, down to my fingertips. I laid there an hour before making a move, and once I did I felt keenly the severity of my condition. Moving was not easy and wouldn’t be for a while. I knew this wouldn’t be something that I could sleep off in a day or two. Shit.
Since then, I’ve been on a roller coaster of physical states, mostly at the mercy of this crash, and life here at the farm has been chaos. For a few weeks I’ve been enduring a symptom I find the hardest to cope with–bone crushing weakness. Spiritually, emotionally, physically, this one challenges me way more than the others. It leaves me the most powerless. There’s nothing to do for this symptom. When it has you, it has you. Its’ demands come in this perverted form of requiring that you do nothing–which is basically the reverse of our instinct in response to a ‘problem.’ It requires that you lay still, it means you’ll need a lot of extra help for things you’d normally do yourself and never think twice about. It means playing the waiting game and not knowing how long you’ll play it, without allowing impatience or succumbing to anger or despair while living through the thick of it. (Those reactions only makes me weaker.) There aren’t pills for weakness like this, not exercise regimens or quick fix solutions. There’s a lot of being stationary, quiet, often remaining in one place or one room for a solid chunk of time. Sometimes it’s a messy room, and you have to let that go. You have to let the dishes go. Truthfully, the whole thing is a crap ton of letting go. You have to achieve cleanliness mentally, because there ain’t no way you can vacuum right now. It means putting off the long list of things you’d thought you’d do, and finding ways to achieve a surrendered state of mind despite the external world around you appearing to unravel at nearly every seam. It touches everything, seeps into every corner, means nearly anything that isn’t necessary in the moment must be put on hold or go in the ‘burn pile’. You have to find a way to remember that despite all the can’ts and don’ts and no’s, somehow you still have everything you need in the moment you think to ask.
The only times I get overwhelmed is when I try to conceive everything at once, or I think of the future, as proximal as the one five minutes away. And the root of this is fear mostly, fear of ways the illness will hinder the things I have to do. Yet the future always comes and I always survive it, the essential is always achieved one way or the other. The non-essentials fade and soon you hardly notice they’re gone. When I stay extremely mindful of right now, tending to exactly and only the task right in front of me, I truly feel fine. I feel positive and at ease instead of buried, powerless. I think, all I have to do is drink this glass of water. I don’t even have to consider what will come after. It will come and go despite my concern. That’s where my navigation of this crash has felt like a small miracle. Maybe for the first time, my spirit has succeeded and carried me through the really difficult times. I’ve often been able to observe what’s happening to me at a distance, without becoming crushed by what I see. Or angry at how I feel. I feel really crappy, really weak, and so I find a good reason to be really weak today. They exist! They just require an adjusted perspective. In this way I’ve had the crash more than it has had me, and that has made a huge difference.
To whom or what do I owe this miraculous capability? Well for one thing, my mom. I should mention it’s not just my spirit that’s carried me, because it’s my mom who has physically carried me. She has tended to my needs when I’ve been incapable. Not to mention that she has a prayer chain halfway around the world dedicated my wellbeing. Just knowing so many people have dedicated even a moment toward healing intentions and thoughts for me is both humbling and energizing. It makes me feel hopeful, and that hope gives way to optimism, grace, surrender..they’re all there, and this situation constantly brings to light the choice I have in how I’m going to receive my circumstances. Whether or not I will accept and recognize all the treasures that lie beneath the hard stuff on the surface.
I believe there are always incredible gifts waiting at the heart of our struggles–and this time I was able to find them at clutch times. They don’t come from me, but somewhere else more eternal. I suppose the gifts materialize when we open ourselves enough to receive them– to the vulnerability that comes with accepting help in the first place. Our silly human egos could easily interpret the reality as I’m not enough. I should be able to do this alone. Blah blah blah. But to simply acknowledge the truth that yeah, I could really use some help right now if I’m able to emerge through this in one piece, the disappointment of need or felt inadequacy melts and grows into a ginormous humbling gratitude in acknowledging that I have help at all. What a reassuring reminder to know that I don’t have to do this alone. So why would I? I have help! It’s sortof like staying in a miserable marriage for 20 years all so you can say with pride that you’ve been married for 20 years. It may momentarily impress people, but you’re the one who has to share a life and go to bed every night with a person you may not even love or like! Sometimes we go after things because we like the sound of them, or the image they create. But the real meat of life is on the inside, in the everydayness of how we live. Not a 20 year anniversary, but how you love and treat someone through the mundane parts of life together. Talking about dentist appointments or discussing an article in the newspaper–how did you speak to one another? Not that you beat or survived illness, but how you treated it day to day and through the challenging times, how you treated those around you, and what you made out of your experience. Make it count? Or just get through it so it you could quickly forget and attach to something else. I don’t know. I’m rambling again.
The realization of some of these things makes me smile and cry at the same time. I am so encouraged and fulfilled by all the love and help I’ve received, and it’s come in so many different forms, all of them special. I’ve had incredibly healing and inspiring conversations with people I’m very close to, and each one of those talks builds me up higher than before. What a hushed relief surrender is–and a gateway emotion at that. It opens the door to a surge of mindfulness that illuminates grace, friendship, love, thankfulness, all the good in my life that I’m blinded to when I’m distracted fighting something I most likely can’t control.
It’s difficult to articulate, but sometimes I zoom out from my life, like a camera zooming out into space with earth at the center, becoming smaller and smaller. When I do, lately I see a small figurine of myself living inside the palm of two big porcelain hands cupped together, like that of a statue. I see that I’m being held, and in the image, I feel watched over and protected, both from a far off place and a space deep inside. What an amazing treasure it is, to reach out your hands in a time of real need, and to have someone/something grasp them on the other end. For the most part, it’s my moms hands which have reached back. It’s she who provides. Her help, love, and attentiveness is immeasurable. As equally as my spirit, she has done the labor of care that being sick this way requires. And it’s not an easy job, though she’d never let you know that.
No doubt this has been painful and overwhelming for her. She has said that seeing her child in pain is far worse than having it herself. I’m very aware of this, and it’s even more reason that I feel the need to voice out loud what has been burning true through all of this– That it’s all OK. I am OK. I’ve felt strangely at peace through the tough stuff, and I know it’s on account of her and other loved ones in my life who’ve given so much of themselves just to try and lighten the burden. I am continuously strengthened by these acts. I want to assure her, because I feel it in my weak little bones, that this is all leading up to somewhere great. I’m certain that I am just where I am supposed to be. I don’t feel like any of this is random or cruel, but that it’s the work I am meant to do right now, and I accept it with fullness and eagerness. I know there is greater reason and payoff that we can’t see yet. But knowing it’s there waiting helps to greet all these “stresses” with an assured openness. Getting there requires work, but it’s work that I’m capable of; important work that doesn’t require a physically fit body in order to happen. It will be beyond worthwhile, if we can only get through this moment. Then the next one and the next one.
And the good news is we can! I can, I have. And I will continue to. Her enormous and powerful love has helped put my inner self on a plain where I am capable of moving forward and growing from this. For that I owe her…well, everything. But I know the only payment she would want is the certainty that I’m not only OK, but that I’m happy and that I haven’t forgotten the novelty of what it is to be alive. And if you’re reading mom, I haven’t. I experienced incredible moments, inspirtations, and laughter, often alone with Monty in my messy living room! This is it right now, and I’ve found immense joy in it anyway. Like you said, This is a life, too.
I know this doesn’t solve the many problems we have right now. There are so many other things that haven’t gotten the attention they need, important tasks that had to go un-done, financial burdens that we have to figure out. And most of this is on account of this all-encompassing illness that touches everyone around me, especially her. But I do feel that soon things will change for the better, that we’ll get help where we need it, we’ll complete everything that’s gone undone. I know one day we will smile with relief at the memory of trying, chaotic times like these, where everything was falling apart. And yet I know these are what will become the foundation for some amazing things to come. When they do, incredible things are going to start happening. I can feel it!
For now though, a breath. A glass of water. Rest. Feed the dog. Rest. Send a text. Pills. A breath. Rest. Small tiny moments. One foot in front of the other. I feel really weak today and I can’t do a lot physically, so I’m going to find a good reason to be weak today. Writing, reading, listening compassionately to someone. Photographing my dog because I love him so much I smile just watching him sleep. So many amazing things require so little of us physically. Navigating each moment with quiet consciousness, I know not that everything will be OK, but that it is OK now. And I revel at the momentary freedom in that. I’m grateful just to glimpse such a powerful truth. Today is heavy and rainy outside, there are dishes in my sink and I’m too weak to do them. But I’m listening to Christmas music, I’m admiring my ridiculously huge Christmas tree and the soft nostalgic light it casts on my living room. And I’m reassuring Monty who is staying unnaturally close to me (following me into the bathroom and squeezing between the toilet and the wall) because it’s thundering outside and for him this equals imminent threat of death. This is my life today, and many days, and I’m living anyway! I’m enjoying it. I like the rain. I like quiet days. I also like singing obnoxiously loud to Mariah Carry Christmas songs. Monty and I, we’re fine over here. A sick life, but still a life. Regardless of physical outcomes, All will be well. But even better, all is well now.
Thank you, all of you, who have kept my spirit so alive! What all of you have contributed in your own small ways matter immensely to me. I feel extremely connected to the world and am humbled by the love I’ve received. I’m excited for the ways I plan to pay it forward.
Health, Happiness, and This Life, Too.
The Grays: As in, A Case of ‘The Grays’ is an amorphous cousin of The Blues, less concrete and more insidious. Where The Blues are a despondency with traceable roots, a break-up say, the source of The Grays is less clear, confusing the host and lengthening the distance he feels between himself and the world around him. It’s a removal of sorts. It doesn’t make everything feel bad as much as it makes everything feel the same–it removes ‘specialness’ casting all things in the same ordinary light. It becomes hard to see yourself clearly, to feel what direction you should go in. A person with The Grays can’t point to a particular occurrence and say Aha! This is the source of my sunless nature! All he can say is that a colorless film has covered his eyes, rendering all choices, all feelings, all consequences the same. It makes trying and not trying essentially the same–it dissolves meaning, in other words. Love, apathy. Good, bad. Going, staying. Same, same. Does he want an apple? Sure, he’ll take an apple. But it would be just the same if he didn’t take the apple. Eating it won’t bring him any satisfaction, and not eating it won’t make him wish that he did. Take it or leave it. Take anything or leave it. Same, same.
I can’t say exactly what kicked me into the slump I have named The Grays. I suspect it had a little to do with the crash I’ve been in for a few weeks now and from which I am still not recovered. I know that often when my body gets overwhelmed for a long period of time, eventually ‘it’ seeps into my mind, my emotions, and I feel psychologically overwhelmed as well. I’ve been short of breath on my feet lately. Dizzy, heavy, and extremely weak, particularly when I try to stand or walk or move around. My legs feel like cemented blocks that are so heavy to pick up and put one in front of the other when I try to move, that I mostly haven’t. It’s been that way for weeks now, and staying sedentary too long would make anyone restless I’d guess. It gets old having to put off things until tomorrow that you already put off until today, over and over and over. Your surroundings start to grow stale, and wanting to change them but being too sick to get out of the house becomes a whole other challenge. Of course, this isn’t my first rodeo. I’ve been through crashes much longer and worse than this, and I’ve become pretty good at riding out sick times without giving in to despair. But that’s the thing– this isn’t really despair. It’s not heartbreak or grief or anger. It’s more like a hole where my feelings are supposed to be. A lack of feedback, a lack of identity, an inability to see myself in the world and where I fit in it. It’s this dimming effect on my surroundings and myself, blanketing the normally vibrant world in the same, colorless hue. Gross! This will not do.
The worst part about the Grays is not being able to easily or immediately pinpoint their cause, making it much more difficult to navigate and fix. It also usually means feeling bad about the fact that you feel bad, because you feel like there’s no real reason, or maybe no good reason, that would explain the source of your gloom. So you feel more bad. Have you ever cried and not really known why? It’s the worst! You start crying more because you’re like “Why am I even crying right now?!” Which results in a louder eruption of wailing, sometimes causing you to snort and sniffle, which might lead to a weird outburst of laughter, highlighting the absurdity of it all but then segueing back into loud sobs and a near certainty that you must be insane. It’s an emotional disco party! The funny thing is how absolutely lost I can feel in the midst of crying, buried and convinced there is no way out of the state I’m in. But almost immediately afterwards, in those moments of recovery where you’re sniffling with a tissue and taking those shaky, post-sob deep breaths, I always feel relief. I feel incredibly lighter and way more capable of finding resolve. There is always a rejuvenating sense of clarity–even if I’m still uncertain about the cause of my feelings. I can see myself again. I can see the other side.
I think sometimes the Grays emerge because I endure pain and I’m not always conscious that it hurts. Sometimes things make me sad unconsciously and I’m not so aware of them of them, or I just don’t understand why it’s painful, so I end up not giving it enough attention. I brush it off or just move on the next thing. But you can only do that for so long. There is always a breaking point. The pressure builds, the feelings need an outlet, and so there you are crying your eyes out for an hour after finding a dead mouse in a mouse trap. (True story)
But couldn’t it be said that I’m just a huge animal person and given that even dog food commercials make me cry it wouldn’t be unreasonable for me to cry at the sight of a dead mouse? Maybe. But I don’t think it’s that, completely. All things convey life and death in their own way, and they’re all reminders of the strange contract we had to sign. But I think it’s simpler than that and I’ve been sort of dense about it. I think the truer source is that sometimes, being sick for so long really just gets old some days, and I don’t feel strong enough to smile about it and say that I haven’t given up hope. (I haven’t, and I really never will.) But some days, maybe it’s OK to just admit that things are really hard right now, that life is getting you down, that you wish you could change the things you know you cannot change. That you’re blowing it with the Serenity Prayer! Perhaps the Grays are a result of not giving our inner selves and feelings enough examination. A voice. It’s not that we should complain and whine. It’s more about acknowledging what is true despite the vulnerability it will highlight. Maybe sometimes you just say it out loud and look it in the eye and admit hey, this hurts. This is hard. I need some help. I think voicing the feelings and allowing yourself to be sad without immediately trying to fix it, helps open up a space between you and the pain, and within that space is where you can start to understand and move through it. Awareness helps bring even the smallest amount of light to whatever hole you find yourself in, and that light illuminates what’s on the other side. Finally, you start to see a pathway out. But it means going through first.
The challenge is always to express and validate the feelings without succumbing to them, getting stuck in your story. The opposite of dismissing the pain is letting it take over, using things that have happened as a crutch for negativity or allowing them to defeat your hope and enthusiasm. This is what encourages the victim mentality, something I work consciously to stay away from because it seems unsettlingly easy to go there and stay. It takes hard work to locate and live in the middle of these two roads–and I’ve found myself lost many times, too far down one or the other. Saying it and feeling it too much, letting it dictate too much of me. Or convincing myself it’s not worth talking about, to deal with it alone, not asking for help when I actually need it. Finding my way to the middle is where I see things the best. I can see my life from a distance there, unencumbered by feelings about it. I can see my true self without my opinions distorting it. I can reconcile who I am with the kind of life I want to live. I think so often the source of my pain is that I’ve convinced myself I can’t do or achieve the things I want or am meant to because certain things, like being sick, are inhibiting me from achieving them. But when I reflect deeper about this I think the opposite is true. I think what I am meant to do and be is actually born out of and possible at all because of these very unique conditions–the ones I didn’t choose. The ones that were not a part of the plan. Perhaps they are in fact what’s allowing my real purpose to unfold, and not hindering it at all. Maybe all of this comes down to a simple shift in perspective: stop seeing things as road blocks that are actually opportunities.
Of course, it’s always easier to write and say these things than it is to practice them. I know that words only have so much power, and just writing them down doesn’t make them any easier to live by. But writing has always been a relentless reminder of what is true and good in my life. It helps sort out the real from the meaningless. It seems to function as a mechanism of discernment for me; a sifter of stories from truth. Thomas Keating wrote that “Discernment is a process of letting go of what we are not.” Sometimes I find peace in sitting down to write, because it forces me to come to terms with the truth without feeling defeated by it. Like Nepo says, The instant fish accept that they will never have arms, they grow fins. Sometimes it helps me remember that despite being sick, I can still become who I am meant to and do the things I find most important.
I find that opening myself to the vulnerability of what might be revealed, I usually unlock some truth when writing that I’ve forgotten along the way. It forces me to look past the petty things that sometimes I lean on too heavily on. It encourages me to examine the deeper meaning of things that on the surface can seem painful without a purpose or value. I am often surprised by what emerges when I sit down to write–it’s rarely what I intended or consciously planned to address. I know it sounds a little pie in the sky, but often the words don’t feel like they’re coming from me exactly. Sometimes I don’t even totally understand them. I feel more like a medium thru which other sources are using to reveal more important things than whatever crap I planned on. This is when I understand our passions being called “gifts.” The words are not mine– More than writing well, my job feels like listening well, and then very carefully relaying whatever’s coming through. It’s a sort of prayer, therapy, and mediation in one.
I think the connections and truth and awakening that writing provides might be what all our passions do for us (and the world) on a deeper level. Gardening, physics, furniture making, piano, whatever–they’re all devices that help us see the world more clearly and to feel distinctly our unique “spot” within it. They’re a way to figure ourselves into the cosmic equation and have it equal One. They are reminders of our humanness. All I know is that the longer I go without writing, the further I feel from myself, and the more distant I feel from the world. Lost this way, it becomes much harder to find that path to the perfect middle where I can myself and the world with the right set of eyes.
It might seem surprising since I tend to do it a lot, but I am always extremely cautious to write about the dark stuff. I always hesitate to post during the hard days, not out of fear really, but more because I know that what I give my attention to is extremely important both in my physical and mental health. I have to be careful about where I direct my focus. My hope and my experience is that writing things out helps to reveal things bigger than the pain. It brings a level of consciousness to wherever I am, and that helps see my reality better. My goal is always to find something good to take away even from the crappy times, because for some annoying reason, pain is extremely educational. But in order to grow from it means we cannot stop at the pain. That’s where we start–the reaching out, sharing, crying, and writing all provide a way to feel and understand it, and also to keep moving forward. I’ve basically done all of those things in the hours I’ve spent writing this. So thank you for letting me go on for so long. Whoever you are. Because you know what? I don’t feel so buried by these Grays anymore. I haven’t succumbed to stagnancy and I feel a space between the pain and me. I feel more connected to the world, and I’m starting to see it in color again.
Health, Happiness, Away from The Grays