Guess What? It Get’s Better.

It was on this day one year ago that everything changed. And the change began with everything falling apart. One by one, the “solids” in my life unraveled like lazy yarn. It all started on New Years Eve, 2010.

My body was in what I like to call “Fail Mode” and I was at my parents house, feeling isolated and crappy. I was convincing myself that by that night I would feel well enough to leave, join the world in the celebration of a New Year and maybe even drink some champagne. Hah. Did. Not. Happen. By 5 pm I was sending out a very familiar text: “Sorry dude, I feel terrible. Won’t be able to make it…” If I had a nickel for every time I’ve said that phrase, well, you know.

Happy New Year! Oh wait. My life sucks.

That night I finally had a bit of a mental breakdown. My parents stayed up until midnight. At 12 they kissed and I looked down and saw Monty, so I kissed him. My new years kiss was with my dog. GREAT. I kept reminding myself that it was only a night, it wouldn’t last. By tomorrow, the party I was missing would be over, and so would all of this. For some reason, my mom couldn’t sleep that night and neither could I. I walked out into the living room around 2 am, saw her watching TV, and lost my shit. Through the tears I finally admitted to her how worried I was about my life. I hardly had a social life anymore. I was barely making it to work every day. Traveling was too hard on me so I had basically stopped. It felt like all I did was work and sleep. I had nothing left for anything else. Nothing left for the ‘good parts.’ Nights and weekends were often spent in bed, catching up. I felt out of control. The illness was in control, and that scared me. My mom counseled me through it the way she would continue to do for the next year. She reminded me I was young, that this moment wasn’t forever, and there was still a lot of possibility if I could only hang on. She was right. But hanging on is the hardest thing to do. At times this year it felt like I was sinking, and couldn’t see the bottom or the top.

I felt like the "Help! I've Fallen and I Can't Get Up" lady

New Years Day I was no better. Everything hurt. I was heavy, dizzy, and nauseous. I would be stationary but feel carsick. Walking became hard. Too hard. I continued to get worse until Monday when I woke up and felt too fatigued to walk to the bathroom. That’s when I called the parents, they came to pick me up, and the gradual “move back in with the parents” began. Each day it became painfully more clear that I wouldn’t be able to live by myself anymore. It didn’t bother me so much at that point. I was too sick for pride.

I remember when my sister came to help out at the end of January and I told her I wished there was a fast forward button. “I just want it to be over.” She sat with me, said she wished for one too, but told me the truth. “It’s gonna be hard Mare, but we’ll get through it.” And now I look at the date and see, I made it. The crappiest year of my life, is about to be over. Hells yeah! Sometimes I wish I could bundle 2011 up in a big bowl of lint and burn it to nothing. The truth of the matter is it’s all theoretical anyway. January 1st is just the day after December 31st. It doesn’t mean anything, really. But our perspective changes. We make new plans, pledges, and goals in hopes for not a new life, but a better life. Even though it is just another year, and there’s a possibility it could be even worse than 2011, I am a romantic for the capability of change. And a new year holds great possibilities. It’s like buying a fresh new notebook. You don’t know what will fill the pages, but the prospect on the blankness excites you.

The truth is it’s about to be 2012 and my struggle is going to continue. I’m not all better. I am still jobless, still living with my parents, and struggling to maintain relationships. The challenges I faced in 2011 are still going to be there. My hope is though, that I’ve learned and suffered enough to manage what’s in front of me. Like my mom says, “Just do today.” I hope that I continue to grow, that I cherish what I have and not long for what I don’t. I’m looking at 2012 as the year of possibility. My only job is to stay open to it. And I think I can handle that. I think!

One of the best moments in 2011 occurred in a bathroom stall on my birthday. My friend Kaitlin and I walked to an ice cream shop on Magazine street. In the bathroom stall there were all kinds of scribblings and drawings on the wall, but my eyes went straight to a phrase written in green. Someone wrote this: “It gets better. I promise.” I immediately sensed my dad. Of course my dad didn’t write it. It was probably some stoner kid feeling wildly optimistic. But I think it was from him that I saw it. I felt it. And I felt better. I walked out holding on to the energy of the phrase. Because that’s what I felt from it; energy. It’s like the energy in saying “I’m going to die one day” or “I love you” for the first time. It’s wild. But it’s real.

Anyway, I wanted to share the dark times of this year but also the moments of relief. Because it wasn’t only grand gestures, it was also the very small things this year that carried me. Things as small as writing on a bathroom wall. In the moments where I was hanging on by a thread, I would grab hold of anything to get me out. Sometimes the only thing to concentrate on was my breath. So I’d start there. The most important thing to remember is that every moment passes. Today will be tomorrow soon. Tomorrow will be next month, and alas, the year will end. This year began with everything falling apart. The new year begins with everything reassembling itself. That’s the thing about things falling apart; they always get put back together, stronger than they once were.

Health, Happiness, and It Does Gets Better. I promise.

Happy New Year!

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How to be Sick.

Merry Sickmas!

I was going to write Mary Sickmas, but sometimes an abundance of puns can be off putting if you know what I’m saying. Anyway, Merry Christmas! I am a little late. It’s been a chaotic week, and as I sit here writing this the chaos ensues. My brothers and sister and their significant others are currently on a search for the best Sazerac in New Orleans. (The official Nola Drink) This means that when we all meet up for dinner later everyone should be good and loaded and the meal should go nicely. I wanted to go on the hunt with them but my legs were starting to give up after breakfast so I took the old lady bus home. OK it wasn’t a bus. It was just a car with my 82 year old grandma and my mom, who weren’t in the mood to walk down Bourbon Street in search of alcohol. Maybe by 2012 my mom and I will be well enough for those types of adventures. Maybe even Grandma, too.

This year we did something a little different. Since our humble home can’t house all the DAMN KIDS comfortably and their significant others and my grandma AND Monty, the siblings rented a house on St. Charles Avenue for us all to crash in. It’s a beautiful house, built in the 1800’s with all the modern renovations you find in those interior decorating magazines. It’s nice. The street car passes in front of the dining room window. And every time it does my brother Nick raises his arms in the air and yells “STREEET CARRR!!” Somehow he hasn’t grown tired of doing it yet.

It’s been a really great Christmas mainly because all four siblings are in Nola to celebrate it. But the icing on the cake is that my grandma was able to make the trip down South from Colorado. She’s kind of a hot commodity in the family being that she has six kids, 15 grandkids, and I don’t know how many great-grandkids. I lost count. Her name is Mary too, and she is someone I really look up to for a variety of reasons. Namely, her optimism–which is something increasingly hard to find and at the same time it’s totally contagious. You find yourself smiling more at simple things when you’re with her, or taking note of scenes that typically you’d never stop to consider. If I were going to give her an award, it would be “The Most Pleasant Person on the Planet Award” because that’s what she is. Undoubtedly. On the way to dinner on Christmas Eve I asked what she wanted for Christmas this year. She closed her eyes and thought a moment and then said “Ya know, I can’t think of a thing. I have a perfectly happy life!” And she wasn’t just being sentimental. She says outrageously kind and positive things like this all of the time. I don’t think it strikes her that that type of thinking is rare. She’s always been that way.

Grandma Bell. She's wearing a nightie made in the 50's. No joke.

I loved her response though. How many times I am asked what I would change about my life, what I want, what I don’t want, and ideas fly out of my mouth like a verbal bulleted list. As though I’d been rehearsing what other life I may want. When asked what people want, whether it be for Christmas or just in life, seldom do people say “I don’t want anything.” And if they do say it, it often means “I definitely want SOMETHING, but I’m going to say I want nothing. But if you get me nothing, there will be Hell to pay!” I’ve been thinking about what being content really means. For so long after getting sick and losing so many things, I’d play over and over what I had lost, what it had cost me, what I wasn’t doing, where I wasn’t going. Like a rolladex of veritable “If only’s” the cycle would start, and that type of thinking is bad news. It’s also really hard to stop. It sortof self-propels itself. More recently I’ve been realizing that the idea of happiness is so much more simple than I pretend. It doesn’t have to be some far off dream. There are plenty of sick people who are happy. Plenty of poor people, plenty of people working mediocre jobs, and plenty of people who have lost in some way who are happy. That says to me: happiness is already available. The question is, are you accessing it? I don’t think this is an easy process. And I think I had to experience the pain and grief of the things I have lost this year. But at some point, the focus has to change, my energy has to change, and inevitably, I will change. Only I can do this, nobody can do it for me.

Sometimes I think the way to handle a big tragedy is the way in which you handle a small tragedy. For instance, when my grandma spilled some of her drink on her shirt at dinner, she said “Oh Fiddle Faddle!” Then she wiped it up, asked for another drink, and continued the conversation. It’s funny that sometimes even small episodes like this can ruin a dinner or a night just as much as locking yourself outside or finding out you have cancer! Obviously the consequence of one is more detrimental than the consequence of the other, and yet the way humans react to things, it’s hard to know sometimes whether someone spilled their drink or someone has died.

Last night as I went to sleep my thoughts took a noticeable shift. For so long I go to sleep thinking how to get better how to get better how to get better because the thinking is that when I am better is when I will be happy. But last night these words occurred to me: How to be sick. If I learn to master being sick, I can find happiness now, I don’t have to wait for it. It doesn’t have to be conditional. Of course I will continue to try to get better, to keep up with everything the doctors say, and make healthy decisions. But I don’t need to rely so heavily on potential change in order for me to start rocking right now. I think my grandma has encouraged this type of thinking, so I am very grateful she was here to spread some of her magic on us and New Orleans this Christmas. That lesson made a great gift.

Health, Happiness, and Merry Sickmas!

**Excuse the Dr. Phil tone of this post. I’ve been watching a lot of Oprah.

For the Love of Dog.

There are few people so understanding, so unconditionally loving, so uncalculated, forgiving, accepting, and such masters of the moment as are dogs. This is why my best friend is not a human, it’s Monty.

The last week has been a rough one for me physically. After the thrill of that post going viral, the prospect of new possibilities, and two anatomy finals, my body finally caught up, and crashed. The night of my last final I crawled onto the couch feeling a little dizzy and a little shaky. I spent the next three days there. I’ve been sleeping 14 hours a night and still waking up exhausted, feeling easily that I could sleep 14 more. Through the roller coaster of emotional highs and physical lows, there has been one constant, and that has been Monty. The day the blog went viral, we danced in the kitchen in a circle. His paws on my hips, I was laughing with excitement, and he was just along for the ride. I remember thinking, ‘He has no idea why suddenly I am dancing and my parents are opening champagne’ and yet he danced anyway. We were happy, so he was happy. If that’s not a lesson for human beings I don’t know what is.

After a couple of days of dancing and laughing came the inevitable crash. Finishing my final on Monday evening, I fell asleep that night at 8 pm. I woke up on Tuesday around 11. I was dizzy, heavy, and weighed down. Monty woke up slowly with me and I took him on our morning walk. Half way around the block I was feeling that inescapable fatigue crawl over me, and I knew all I’d be able to do that day was lay down. I whistled to Monty and we started back home. We’d only walked maybe a block, but it was enough for him to do his business and mark his territory on four different plants. Once inside I ker-plopped onto the couch and he followed. He laid his head on my legs and we slept another few hours. It was like he knew that’d be the extent of our physical activity that day, and he was OK with that. A dogs intuition is nothing short of amazing.

The rest of the week including today, has been a lot of sleeping and not as much fetch and tug-of-war as he deserves. And yet he seems happy. It’s as though whatever the moment throws at us, he embraces. Tired? We sleep. Energized? We play. Hungry? We eat. Happy? We dance. And there is no remembering or holding onto anything, and there is no anxiety or worry about tomorrow. There is just, this. And he does this, so incredibly well.

Sometimes when I lay awake at night thinking about what the answer to life is, this is what pops into my mind: Pupppies! It makes me laugh. But have you ever played with a puppy and not smiled? It’s impossible. Continuing on, even as I write this, Monty is curled up next to me on the couch, quietly breathing. We woke up two hours ago. He isn’t mad that we aren’t going to the park today, even though that was the plan. Sometimes on sick days I just lay petting him, watching his belly go up and down, and I feel at ease. That is what he seems all the time–at ease–and isn’t that how our life should be? When we’re at ease, we are open to good things. Once we tense up, we close ourselves off.

Anyway, I dedicate this to Monty, and best friends everywhere. I often wonder what humans would be like if we were more like our canine counterparts. Not in the sense that we would sniff each others butts, but what life would be like if we became masters of the moment. If we lived without ego. All of us. That sounds like a nice place to be.

I’ll end this with some tribute pictures of Monty..aka The Monster!

Arph and Arph and Arph Arph Arph! (get it? that was monty doing the sign off…you get it..)

lap dog.

kiss for monty.

kiss for me.

throw the ball. throw it!

mm hmm.

 

 

 

Thanks, I’ll try that.

A story.

After working a couple of months full-time at the Art Gallery, I started calling in sick more and more frequently. I dreaded making the call. I dreaded hearing my bosses voice after I would have to, yet again, say I’d be late or not in at all. I was really lucky to have the boss I did because for all the times I was late and absent, he remained pretty understanding and encouraging. But he was only one guy. I worked in a gallery with 40 other people.

There are some inevitable things you’ll confront with this illness. And from the emails I’ve been reading recently, it isn’t just this illness. It’s all kinds of autoimmune diseases and beyond. The first inevitable thing you’ll confront: people who don’t believe you. I always wondered why that was. Why would I make up the stupidest sounding disease I have ever heard of? Chronic Fatigue Syndrome? Why don’t they just call it Tired-Lazy-Person-Disease. Anyway, I know people call-in sick when in actuality, they aren’t. That’s occurred since the 40 hour work week began, I imagine. The last 6 months of my job were more me faking healthy than sick. I was sick everyday. It was just a matter of, was I not too sick to be able to get through the 8 hours. Having a boss who believed me was a blessing. Unfortunately, the rest of the office…wasn’t  so sure. If I really think about it, I can’t totally blame them for their skepticism. Some young newby walks in the office with optimism in her eyes and excitement about having her own office supplies..then slowly…surely…shows up less…and less…and less. I knew the things they’d say when I called in. I heard what they would call me when I wasn’t there. I walked into enough rooms with that sense hanging in the air…that tangible feeling that you were the topic of discussion, and it wasn’t about how great you are! Some of them just looked at me with plain anger, which was hard for me to swallow. But I knew what they thought at the root of it: that it wasn’t fair. I got to miss all this work while they got their asses to the gallery everyday and on time. Everyone is tired, that’s no excuse. If they only knew how unfair it really was. I would’ve gladly traded with any of them. I always said that, but no one believed me.

The next thing you’re going to confront: advice. Sweet, unsolicited, unknowledgeable advice. And here’s how it will go. Have you tried acupuncture? Have you tried rolfing? You need to try acupressure. You need to re-set your bodies internal clock. You should do yoga, at least 3 times a week. You should work out, hard, every day. You need to drink more water! Have you ever considered going gluten-free? Dude, it’s probably the mold. You should avoid dairy, that’s what my mom did and now she’s all better! You’re eating too much salt. You just need to push through it. Massage therapy! Chiropractor! Holistic medicine! You should stop taking every pill you’re taking, cold turkey. I’d bet you’d feel better. Go running! Go to a psychiatrist! Go to India! I heard this thing about acai berries… Have you tried talking to God about it? You may dabble in Buddhism..that did a lot for me. I’m sure it’s nothing a little exercise couldn’t cure! If you just spent 2 weeks with me, I’d have you fixed in no time. Stop drinking coffee! Stop eating meat! Stop eating and drinking! Don’t sleep so much! Have you ever gotten your cavities filled? Ah, it’s your fillings then, they’re leaking toxic chemicals into your blood. You should try taking magnesium, you’ll feel better! I have something called Tylenol, will that help? 

And those are just a few..I could go on. Also, those are all real pieces of actual advice I’ve been given. And I’ve become pretty well-versed at receiving advice that I don’t want. And the response is this: Thanks, I’ll try that! The reason I say that is because, for me, I was tired of spending hours explaining to people that I had already tried pretty much everything, seen 10 doctors, and tried diet changes. People couldn’t understand that exercise made me worse and rest was actually good for me. By the end, you’re just tired. Tired of talking about it, tired of fighting people on it, tired of defending yourself, of convincing people you’re not crazy, you’re not lazy, and you’re not a basket case. By the end I didn’t care. Truthfully people just want to help you, and so they offer advice. And that’s fine. But, would you tell someone with aids to just drink more water? Or someone with cancer to just take more vitamins? Doubtful. Not unheard of, but doubtful. And that is why, it’s just so much easier and less exhausting to say: Thanks, I’ll try that. Smile and nod. Thank them for the advice, and keep moving. They’ll get it or they won’t. But whether they do or not is not what will get you better in the end. It sucks not to be believed. It sucks to be misunderstood. But when your energy level is already such a commodity, it becomes a matter of livelihood. I didn’t have it in me to fight the world anymore, so I let them say what they say and do what they do.

There’s a quote I’ve liked since I was a kid that I would play in my head when the “noise” of the world became too loud. It’s something like this:

No one knows what I am. Only I know what I am. If I were a giraffe, and someone called me a monkey, I’d think, No, actually, I’m a giraffe. “

So it’s not the deepest of quotes, but I enjoy the simplicity of it. And that’s how I started to have to see myself. I needed to stop proving what I was and what I wasn’t, and just be exactly what I was: a sarcastic sick kid trying to get through every day. And many times-failing! Everyone you meet has a story, has their own battle. And we’re all quick to think we know who everyone is, and put them in a box with a nice clean label on it. But inside we all know, it goes much further than that.

I’m sharing this story because I’ve received quite a few emails and responses about the loneliness in being sick, not being believed, and the difficulty in explaining their respective illnesses to people they care about. I am just one person and this is only one experience, but I think this is a big lesson. Allow yourself to be sick. Accept what is. Don’t run from it anymore. Don’t dwell on it either. Just acknowledge what is, and see where the clarity takes you. You’ll be surprised. My final thought is this. After a particularly hard day, a few days after I had lost my job and realized I would have to give up my apartment, I was angry. I was really sad but also really angry. I kept thinking about that word Fair, and how this Wasn’t! I don’t know where they came from, but when I laid down to sleep that night, these words came over me: You were trusted with this illness. And that, among all the health advice I’d ever received, made me feel better.

Health, Happiness, and Thanks! I’ll try that.

But chances are..I already have. :)

Writing Poems

Today has been a nice day all around besides only sleeping a couple hours last night. I have an incredibly hard A&P LAB final tomorrow, a test that we should have been studying for over the last two weeks, and I’ve devoted maybe an hour to. It’s very hard to focus on that class right now. I feel I’ve been spoken to, and it’s leading me down a road that does not require Anatomy and Physiology.

I spent the last few hours importing some new poetry I wrote while in NYC in the Spring. I took out my books, but I couldn’t stop thinking of some of these poems, so I put them down.

I feel more connected to the world than I ever have before. It both scares me and excites me. But in the back of my mind, in the spot that often is the only thing telling you the truth, I feel that this is going to be a good thing…whatever this turns out to be. In the meantime, I can’t stop thinking of these lines by e.e. cummings. I wrote them in my notebook in the spring.

“May I Be I is the only prayer-

Not may I be great or good or beautiful or strong.”