Someone asked me recently to write about what it felt like to be a child patient. I had over half a dozen starts, but I ended up scrapping the article because it was too heavy.
Maybe that was my excuse because I wasn’t ready to put that period of my life down in words for everyone, even me, to read. But that’s not fair. Keeping it to myself or glossing it over to sound more optimistic can’t change what was or what would be. So much of my self developed from that one event and the nearly two years of recovery that followed. I just spent a happy weekend with maybe half of the people on the planet who remember that time, and I am reminded that it can’t hurt me anymore. I won.
This is the second of three posts where, I will share the things almost no one knows or remembers from the beginning of my healthcare journey, and how the monster that personifies my conditions came to be. (Read part 1 here.)
Shall I spoil the ending? Everyone loves a spoiler, right?
Well, I lived, and I recovered the complete use of everything that was paralyzed. Almost. I had no use of my left arm or leg. I couldn't walk, so no bathing myself, using the bathroom, going outside to play, feeding myself (try opening a bag of chips with one hand or serving yourself at the table) or writing (I couldn't hold the paper).
Recovery was difficult, much more than the actual disease. Child or adult, you don’t have control of a disease like meningitis. It has to run its course. Once they let you go home, that’s when the real work begins.
Much like the hospital stay, there are things I remember and things I don’t. What I didn’t know then was that my mother had decided that she would do everything humanly possible for my recovery for three years. If there was no progress in that time, she would ease up, but until then, there would be no rest for the weary. It only took half that, but sometimes she pushed so hard that I hated her.
I went to physical therapy every day for six months. Anyone who has been through physical therapy rehab knows that it’s not pleasant, and often painful. My sessions were no different. And they gave me stuff to take home. I particularly hated throwing bean bags through a tire. So tedious. They also gave me this round piece of wood with wheels to push myself around on, which means I must have recovered use of my left arm fairly quickly. I don’t remember that.
After the initial six months, I still had to go, just less often. There was also occupational therapy, which was a lot more fun, although I remember bending my left hand with my right to try to make it do what I wanted. Was that cheating?
Anyway, I got there eventually. Which is good because my arms played a vital role in the return of my mobility. I remember that moment more clearly than I remember yesterday. My mother was taking a well-deserved break from me. She’d left me on the couch in the living room while she was in her bedroom talking to her best friend. I was bored and trying to get her attention. They had given me a bell. Can you imagine anything more annoying than a bored six-year-old with a bell? She ignored me, and after a few minutes, I got so angry, I rolled off the couch and pulled myself into her room by my arms.
That was the first big breakthrough. There is a big gap in my memory between that and the next major step (literally). I go from that to pushing my own (empty) wheelchair or my mom holding me up by the belt loops in my jeans while I tried to make my left leg work.
It was July when it finally did. We were at my grandparents’ house. My mom was standing behind me and someone else, probably my grandmother, was standing a few yards away. My mom let go of me and I toddled over. Just made it. It was exactly what a toddler does with their first steps, only with a more difficult center of gravity and a fear of falling.
It got easier after that. In fact, when I talk about my recovery, I stop there, at 18 months, even though I wasn't 100%. It was the turning point, the moment we realized that I would be able to reclaim all I had lost. But there was no sense of triumph, no overwhelming need to celebrate, at least not for me, just an indelible memory and later, an adult’s perspective of the importance of the moment and what it would have meant if it had never happened.
I’m sure it was different for my family. The emotional burden was harder on my parents and grandparents, and the other adults who loved me than it was on me. They knew what it meant. All I knew was that I didn’t like being different from the other kids or constrained in what I could do. All that work my mother pushed was like chores. No different than doing the dishes – I didn’t want to do it, but it wasn’t my choice. If I wanted to be like everyone else again like I wanted my allowance, that’s what I had to do.
Sometimes I read about similar stories or watch reports about sick kids on TV. None of it looks or sounds like what I remember. For me, at that time, it was simply part of my life story. Different from most, perhaps, but nothing more or less than anyone else might have done. I’m glad about that. If they had made it into a Big Deal, I don’t think I would have been equipped to handle what was to come.