Firsts

Everyone remembers their important firsts: their first crush, their first awkward kiss (please tell me it was kind of awkward for everyone; I don't want to be alone in this!), their first car, their first home they could really call their own. They're milestones in our lives, cultural markers of "before" and "after." You can never really go back to where you were once you've passed such a milestone. I've passed several of the shared social milestones myself, as well as a few only members of the disabled community share.

My first time sitting in a chair of any sort after being hospitalized was an emotional event I got to share with my mother. It was only a Broda transport chair with no means of self-propelling, and I wasn't sitting up straighgt, but I still cried from sheer joy. I was in a chair! After so many weeks of being confined to a bed, I was sitting! I could finally be permitted to see things that weren't directly in front of or beside the bed! Because that chair had wheels, I got to experience another first soon after the thrill of sitting up: going outside.

I remember it being a sunny day, warm but not hot. There was a bit of a breeze, just strong enough to play with a person's hair and rustle the lush leaves of the trees shading the sidewalks. When the automatic doors of the hospital slid back, the fresh air hit me like the first breath of life itself. It brought with all kinds of new smells that had been lost to me inside the building: fresh grass, trees, car exhaust, even a little rain from the night before. I could hear sparrows chirping in the trees in the courtyard, singing their songs to each other as they for magpies and dropped tidbits. Pieces of conversation kept drifting in and out of my range of hearing, their tone drastically different from the ones I often overheard inside: people were laughing, catching up, just visiting out here. In some cases, it was only a medical bracelet that gave away someone's status as a patient.

Mom wheeled me to a shady spot under a tree while I was taking in everything and gave me a frozen lemonade. Sitting there with my mother and my cold drink, feeling the elements on my skin, watching the people and the birds around us...sure, I still looked like hell, and my myopathy was still raging inside me even as my body knitted itself back together, but that moment felt like heaven.

My first bath in the hospital was an unexpected surprise. I'd mentioned that my hands were starting to smell weird from only being washed with hand sanitizer, and one of the nursing attendants (hereafter referred to as NA's) asked if I'd had a bath there. When I said "No," she immediately scheduled me for one the next day. I was taken right after breakfast; the mechanism they used to take me to the bath room was like a giant, white and blue forklift that picks up the patient and lowers them into the tub. Feeling that warm water closing over me, feeling my hair and skin finally being properly cleansed and scrubbed after two weeks of sponge baths...heaven again.

My first time sitting on the edge of the bed scared my physiotherapists a little. My back was still so stiff that I couldn't stay up on my own  (as in, I couldn't sit at 90 degrees, so I'd just fall backwards), so one of them sat behind me while the other pulled me forward. I cried. Not from the pain of having my back and hips stretched; that kind of pain doesn't make me cry. No, these were tears of joy again. I was sitting! Not particularly well, but damn it, those were my feet on the floor! My therapists thought they were hurting me, but I assured them that I was fine and wanted to stay up.

Today, I experienced another first: standing on my own two feet after almost half a year of either sitting or laying down. I still need help to achieve this Herculean feat, but we did it despite my legs' screaming protests. They hadn't had to support any real weight in months, so I can forgive them for atrophying a bit. We managed, despite my weak muscles, to get me standing for 20 seconds. It may not seem like much, but that's the first 20 seconds of the next phase of my rehabilitation. Next thing we know, I'll be standing up completely on my own, and nothing on the top shelf will be safe from me anymore.

I feel I should end this particular post with a very brief summary of some of the things I'll be covering very soon: how I've been in and out of the ER because my immune system sucks, how our game plan has changed because I got too well, how important patient advocacy is, where we're at in terms of geting me the wheelchairs I need, what the housing situationg is, and more things I've learned as a person with a disability. Oh, and we're getting close to remission: my last two CK counts were 600 and 1000. It's gone up and down before, and an intense workout can raise your CK by 400 even when you're healthy, so we're not too worried about that little rise.