Baby steps.

June 27, 2012 at 4:07 pm (my life)

This one might be a bit sappy, and some of it is old hat for regular readers/friends, but it’s an essay I’m working on for a longer thing. Soooooo, eat it. 

At the age of 27, I had to learn how to walk again.

It had been a long few months. After having what I was told was pneumonia for weeks, I couldn’t seem to get any better, and eventually my doctor, scratching his head, admitted me to the hospital for more tests. By the time the ambulance (ambulance!) arrived, I was panting, struggling to speak, and my heart was pounding constantly: it’s amazing how these things can sneak up on you. I thought I was fairly normal except for a bad cold, but I’d been indoctrinated slowly into my own disease.

Within six hours of admission I was put on a respirator and into a coma as a team of doctors tried to figure out what was wrong with me, and there I stayed for almost two weeks. Long story short, I have a rare disease that gives me arthritis in my organs as well as my joints. My heart and lungs had been under attack for weeks and were close to shutting down, but after treatment was figured out and started, I was well enough to be brought back to reality within a day.

I woke up with an enormous new surgery scar on my back, one ankle ballooned up with arthritis, and with muscles that had forgotten how to work. I was so weak that I couldn’t hold a cell phone, so clumsy that I fell out of wheelchairs and couldn’t put a fork to my own mouth. My legs were at once scrawny and bloated, and nothing seemed to work. I was miserable. I felt like I had been put behind the wheel of a car with no steering function.

I started slowly. Nurses would place me in a wheelchair, where I would sit for an hour or so at a time, whuffing up the energy and chutzpah to stand. Having something go from being second nature to Herculean is embarrassing and humbling and terrifying and everything else.

My parents were there, and my boyfriend, and in the two weeks of hospital physical therapy I had, it was their job to help make sure I was attempting to walk every day. In yoga pants and soft tank tops (I refused to walk in hospital gowns), my body belligerent and weak, they would hold me up while I took tiny, exhausting baby steps. They wheeled my oxygen tank next to me and returned the pitying, sad smiles that people gave us in the hallway of the ICU. I hated them. I hated everyone.

I’d always used my body to help communicate to people who I was. I had several tattoos, and at the time that I got sick, short hair that was dyed platinum, brown, red, and purple. Now my own tactics were turned against me, as my limp and pallor communicated everything about me to other people in the hospital, and it was a me I didn’t want them to know. For the two weeks I was on a respirator, my boyfriend and family had gained a support group of hospital staff and families of other sick people, and in those two weeks, that support group all felt that they had gotten to know me too. As I shuffled the halls, I would be hugged and smothered in platitudes of wellness by people I’d never met, and I would only snarl at them, furious at their pity. “Stay away from me” I said to one older lady as she cooed at me. “I might eat you”. My mother took it in stride, whispering to her “She’s had a rough day”, which only deepened the pity eyes. I wanted to destroy them, but since they’d kept the people who love me sane while I was sick, I knew I couldn’t, so I only glared and said threatening things that could be construed as adorably cranky.

But I wanted to get back to whatever normal was, so I walked. “This is the head nurses station.” “This is where we keep your Jell-O.” I was amazed that my Jell-O was kept so far away from me, and thankful that I had people to bring it to me. One day I made it as far as the ICU waiting room, which was probably about 20 feet away from my room, and my mother and I saw my father camped out there, reading a paper and drinking coffee. When he saw me, his eyes lit up in a way that recalled my childhood accomplishments. “Look at this!” he boomed. “Look at how far you’ve come!” I can’t imagine how weird it must have been for him to cheer on his adult child for walking 20 feet, but I never saw anything but pride in his face. The day I managed to walk up one stair, he flagged down a passing nurse to brag to her.

When I walked, I not only needed a oxygen assistant, but an oxygen saturation assistant as well- someone to see how much oxygen was in my blood at any point in time. A normal person has a level of 95-100%. Mine hovered around 80, and if it dipped below that, I would need to sit down immediately so that I wouldn’t pass out. When my boyfriend walked me, he noticed that when I was distracted, my level was more stable, so he started telling me stories as we shuffled along. They had long since stopped enforcing rules with Kumail, who snuck in at night to watch movies with me on his laptop and slept in the chair next to me. Late at night, when there were only nurses around, he and I would walk the halls, and he would tell me about work, his childhood, movies, anything. As he recounted an amazing set he’d seen from one of our favorite comedians recently, eyes always on my Oximeter, I remember looking at him and thinking that I couldn’t possibly love him any more than I did at that moment. I was working on feeling more grateful. I had a lot to be grateful for.

When I was finally released from the hospital, I was still very weak and limping. My physical therapist suggested I get a walker, and I kindly told him to fuck off. He knew me well enough to chuckle and pat me on the shoulder, so no walker for me. The stairs that led up to my Chicago apartment felt like a marathon. I found it hilarious that I moved to a neighborhood with so much great stuff in walking distance, and then the definition of “walking distance” had to go and change tremendously. I shuffled my block slowly, wearing sunglasses, so that I could avoid eye contact. “I DON’T NORMALLY WALK LIKE THIS” I wanted to yell at passersby. “THIS ISN’T THE REAL ME, I’M NOT SICKLY.” After nearly falling down in a restaurant, trying to keep up with the hostess who was seating us, Kumail insisted that I was going to have to start living up to the reputation I’d built, which was that I don’t give a shit what you think about me. “If you didn’t care how they felt about your tattoos, why would you care how they feel about your limp?”

He was right, but still, I felt defective, felt weak, and that was hard. I found solace in being alone, processing everything, and I took longer and longer walks every day, until I felt strong enough to go two blocks instead of one. As I shuffled down the street, face determined, I heard a noise. And that’s when I saw Paddy.

Paddy was a yellow lab that lived in a house two blocks from me and was always relaxing in the fenced-in front yard. Since I parked near his home, petting Paddy was a daily part of my life that I hoped his owners didn’t mind. It had been over a month since I’d seen him, and yet there he was, tail wagging and yelping “Where have you been?” barks. Paddy didn’t give a shit that I was limping. Paddy just wanted head rubs. I limped over and bent down carefully to smell him and pet his huge head, tears streaming down my face. “Paddy, I’m so sorry. I just feel really weak right now and I was really sick but I’m so happy to see you.” At this point I’ve collapsed onto a dog I barely know through a fence and am crying into his furry body. “Paddy, it’s been a real shitstorm, but I’m going to see you every day again now. I promise you. You’re such a good boy.”

I think it was around then that I stopped caring how weak I looked.

It was around then that I realized a walking, limping, Paddy-ful life had to go on.

 

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4 Comments

  1. Zuri Bella said,

    My mom used to be a pretty strong athlete, doing a triathlon, biking a hundred miles, not wanting to lift her arm to her head around guys cuz she had so many muscles and then she got rheumatoid arthritis.

    There are so many childhood stories that revolve around walking or not being able to walk. She would get excited when she could shuffle quickly down the hall or when she walked down the block.

    Then she got Enbrel and decided that when she gave me a bike at 20, she’d just try riding this other bike and then raced me up a hill and won.

    She also always out digs me when she invites me over to dig a ditch for her garden.

    There was no point to this but I wanted to share any way.

  2. Joseph Goforth said,

    Very well written piece. I have muscular dystrophy (congenital myopathy) and reading your trials with recovery is very much like what I deal with, but in reverse. With my condition, since the day I was born, I have been getting weaker every passing year. I’ve went from learning to walk at a late age (around 4 or so) with a walker, to not needing the walker by middle school to starting to use a scooter in junior high due to longer distances (before george costanza stole one on seinfeld tyvm). By university I was walking less and less to the point now in the past decade that I can’t stand up at all anymore. In all those years, it’s the unintentional pity that still annoys me to no end. And I can’t really be mad at them for it (unless they are overly zealous religious people who want to ‘pray for healing’ and lay hands type….). The hardest part of going through anything like either of our stories is to not become jaded and stuck in a gloomy cycle. I’m glad you mentioned that loss of control sensation. That is the hardest thing to relate to people who have not been in a similar situation. I’m not really sure they can ever truly understand it. Everyone tells children they are special and unique, but when you are unique because you can’t do something basic….all you ever dream about is just being normal and average. I know without a doubt, that if a Faustian deal were ever given to me to exchange my life and everyone in it for a ‘normal’ and average body….I would be hard pressed to not take such an offer. But seeing as I suspect that won’t be happening any time soon, I’m grateful for those around me that support me and do their best to understand.

  3. M said,

    This made me cry and I loved it – more like this please

  4. J said,

    It feels wrong to not leave a response after reading this – thank you for sharing this piece of yourself. I feel more inspired than before to stop giving a shit about what others think.

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