The reason I named this blog as I did is that through my life I have been known to push through obstacles, illness and otherwise, and trudge on. My friends and family nicknamed me Superman because I seemed invincible despite everything that was thrown at me. It wasn’t always a compliment, in fact, it was sometimes a snarky shot meaning that I didn’t listen to common sense advice and other earthly notions. That I felt bulletproof. To be fair, they weren’t wrong. But that’s how I deal with things. It runs in my family. It is a good and a bad thing.
Putting on a good face presents well. I may have been sad and sick on the inside but I’m always going to tell you that I’m fine. My doctors gave me hell, told me that I wasn’t taking my illness seriously. I told them to leave me alone, I’m taking my meds and following your orders. You’re just asking me to act sick and I won’t do that. Right up to my transplant I pushed my luck, fought through the symptoms and feigned good health. I like to think that I spared my children from worry. Youth is hard enough without a sick father to worry about.
The downside of putting on a good face is that when the hammer falls it is more of a surprise to those close to you. Something that has been at the back of my mind all along is suddenly at the forefront of theirs. Word spread and the unthinkable happened, people starting feeling bad for me. The exact reason I didn’t make a big deal out of my illness. I hated how the first question people always asked is “how are you feeling?”
I suppose that I always thought there would be a cure. I woke each day hoping that something good was happening in some lab somewhere that was going to keep me off of dialysis. This strategy, regardless of how well it worked for me, was classic denial. I called it thinking positive.
What is so bad about positive thinking? It worked wonders for me. When I visited my Dr’s office I saw a lot of sick people. They didn’t see that when they saw me. I was working out, I was strong, my weight was under control and I walked with my characteristic “rooster strut” (courtesy of my wife, once again not a compliment). I refused to act like a sick person. I was actually told that I was an “inspiration” by a fellow patient. This mentality sustained me until the big day.
Post-transplant I thrived. I virtually ran out of that hospital determined to get my strength back and to make the most of the 15-20 years of good health my new kidney would give me if I took care of it. I bought a mountain bike, I went hiking, I hit the gym and I spent a lot of time outside with the kids to make up for the times that I sat on the sofa watching them play because I was too fatigued to join them. I had proved them all wrong, it was possible to positively think your way to good health. Even my doctors agreed that my way of dealing with it kept me strong enough to breeze through a difficult surgery and complex recovery like a warm knife through butter. I had vanquished the haters.
Then I rejected 4 1/2 years later. Almost overnight I went from feeling like Atlas to a 95-pound weakling. My bubble had burst. What I hadn’t been told is that the disease that had destroyed my original kidneys had could come back. And it did. I was mad as hell, how could they have not told me of this possibility?
Last week I went to see my nephrologist. My overall function is now 30%. In 2 years I have lost about 75% of my kidney function. I had absolutely no idea it was progressing that fast. I’m pissed, concerned and full of doubts right now of what my future holds, in particular, how long will I have what I consider “quality of life”?
I need to find that positivity again. Fast. Maybe even a little of that Superman. I liked it much better when everyone but me knew that I was sick.