Revealing to my wife and family that I needed a kidney transplant was a turning point. My children were confused and upset. I told them everything would be fine. My wife painted a much more grim picture. I was furious with her for being so negative, at one point during an unfortunate argument she blurted out “it’s ok kids side with him he’s going to die and you’ll be stuck with me”. It was a brutal comment and hard to bounce back from. I explained to the kids that the best case scenario was a transplant, the worst would be dialysis. Not ideal, but still alive. I kept to myself the attitude that dialysis is the WORST option, giving me zero quality of life. It was a stressful time, only being compounded by the weight of mind-boggling debt and pending foreclosure. Which is historically great for blood pressure.
The backlash on me was partially deserved. By minimizing my condition I did help myself cope, but I alienated my support network. By avoiding being doted on and being treated differently, and most importantly having my family worry about me, I forced them to come to grips with something in a short amount of time, that I have had most of my adult life to deal with…that I may lead a short life. But at that point, I still couldn’t tell people how I was feeling.
At work I couldn’t escape the attention, it was a big story. In late 2009 I was hospitalized for a serious infection that was renal-related. My manager came to visit me on a Saturday with a stack of magazines for me. He said, “looks like you’re going to need a donor soon, huh?” I nodded in agreement. “What if I told you that we might have one? Deb approached me yesterday and wants to be tested”.
I was of course thrilled. She would prove to be a match and, well you can guess the rest. The company made a story out of it. The local CBS affiliate station came to do an in-office interview with Deb and I. For weeks, complete strangers would approach me and say “Hey I saw you on the News! How are you feeling?” People who knew me at the auction and other areas of my life would say “Hey, I saw you on the news. I never knew. You don’t look sick”. Heavy sigh…there was no escaping it now.
After the transplant, it was the new normal. I am blessed to have so many people care about me. The outpouring of support was amazing from friends, family, social media and company connections. My company threw a huge fundraiser for me, everyone knew my story. It truly renewed my faith in people. But post-transplant I was riding a wave, I felt great and I wanted to put 15 plus years of feeling like shit warmed over behind me. I worked out, I hiked, I bought a bike and then a mountain bike. I found a group on Facebook of local mountain bikers and I showed up. I made a bunch of great friends. One day, after a particularly grueling ride I peeled my sweat-soaked shirt off to change into a dry one and there was my enormous scar for all to see. One guy inquired about it and I gave him the brief breakdown. “Hey, I saw you on the news. That’s quite a story. You look great man!” Now that’s what I was going for.
Now let me refocus for a moment. This series is not about being happy or glad or grateful if people ask you how you are. It is about being known by your illness. When your illness defines you. When people think of how much it sucks to be sick…they think of you.
So when I constantly reference the times when people say “You don’t look sick” or ask “How are you feeling” it puts a very particular set of reactions into place. So far in this series, I am describing the birth of Superman as a coping mechanism. As opposed to the earlier-in-life Superman that tried to save the day and fix everything. He was born because I simply couldn’t afford to look sick and I could never actually tell anyone how I actually felt.
My family relied on me. I needed to be the Dad and husband I promised to be. I needed to be strong. So I covered it up, in a way I denied my illness. For them and for myself. When I was really sick, I had to say no to a 10-year old and a 9-year old who asked their Dad to play football in the front yard with them. I couldn’t do it. I couldn’t get off of the sofa. The look on their faces haunted me. After that, I forced myself to do it or I found a way to avoid it. They didn’t need to know so I didn’t tell them.
With my employer and co-workers I couldn’t answer the “How are you feeling?” question without committing career suicide. It may be against the law to discriminate in the workplace against a person with illness but it doesn’t offer much advancement. I had a huge job that other people wanted and a salary that I needed to maintain. So if my Manager said “How are you today?” there was no reason to give it a logical progression to “How are you feeling?”
I lied, I denied. I feel great thank you. I don’t look sick because that’s the point. It’s a whole lot safer than answering like,
“Well thank you for asking. This morning I barely made it to work on time because I was up all night with spasms that no doctor can diagnose. I threw up in the shower this morning and I am wearing a pair of shoes 2 sizes larger than normal because my feet are so swollen I can’t get the others on my feet. I am really fatigued right now for no reason and I am hardly in the mood for your fucking bullshit but here I am…AREN’T YOU GLAD YOU ASKED?”
to be continued