Has anyone ever told you not to let your disease define you? I bet they have. Once, I thought that was a possibility. I thought I could make my regimen routine, automatic. But as the conditions piled up like one blow after another in a boxing match, I realized that whether I liked it or not, I was my conditions.
What does that mean?
I started out an active, healthy kid. (I was going to say normal, but there’s no such thing.) The first blow changed that. It took almost two years to go from healthy to meningitis and paralysis and back. Well, almost the same, just with a permanent weakness in the left side of my body. The process of recovery had stolen my ability to be active and drove me to books. Books became important to me because no one could see how I was different when I was reading. That has never changed. Would I be as bookish as I am without being paralyzed? Would exercise come more naturally?
The second blow came with my diabetes diagnosis. I knew my life was changing forever, so I rebelled badly for six years. I was a teenager and that was my version of young and stupid. I didn’t rebel in any other area. In everything else, I was a rule follower. Would I have participated in the continuous, passive behavior that would kill me if I didn’t stop without the diabetes? (Not suicide – there was never intent, and I have always been terrified of death.)
The third blow was a jab and a cross – retinopathy and peripheral neuropathy – which threatened my sight and my ability to walk (again). The latter also came with some of the worst pain I have ever experienced, and that includes two spinal taps in three weeks* and that time my mom decided that my neck wasn’t going to be paralyzed, so she yanked it in the other direction and unparalyzed it. Would I have lifted myself out of rebellion without the neuropathy and retinopathy?
The fourth blow came with my chronic kidney disease diagnosis. I jumped in with both feet and landed on stage 3 at age 29. I’d known my mortality since the meningitis, but six is a little young to understand completely. This was the first time I actually felt the threat. It was just one of two times in my whole life I couldn’t help a public display of emotion. I was pretty devastated. Would I have been able to pick myself up within hours and start getting a handle on it as quickly as I did if I hadn’t had previous examples to teach me that I could live with difficult things?
By the time I was 30, I didn’t remember what it felt like to wake up feeling well. I spend hours every week on my regimen – using and caring for medical devices, meal planning, cooking, exercising, tracking water intake, counting out medications, paying attention to symptoms and how my body reacts to certain things. Pretty sure I wouldn’t be doing most of these without my conditions.
So yes, for better or worse, my conditions define me. Care of them dictates how a lot of my time is spent, what job I have, even how my personality developed. I’m satisfied with that. If it hadn’t been my conditions, something else would have influenced me. It’s been hard, but at least this way I got resilience, problem solving, and empathy in return. I’m not really sure who I would be without my conditions. I’m not sure I would want to know.
As Popeye would say, “I yam what I yam and dat’s all what I yam.” So are you.
*I don’t remember why it hurt so much. I hear that these days it’s not such a big deal, except for those who get headaches, but these were in 1983 and couldn’t get in the right position because of my paralysis. I had to be on my stomach straight legged. For one of them, my mom had gone to get something to eat in the cafeteria and when she got back to the department, they asked her if she could hear me screaming on the floor below.