This series began as a discussion of what it was like, speaking for myself only, to deal with an increasingly visible illness. It has evolved into me telling my story. I have detailed my struggle to not let my illness define me, to avoid the default greeting of “how are you feeling”? Not because I have a problem with people caring enough to ask, but because I don’t want people’s first thought when they see me is, he’s “the sick guy”.
So, to catch up, I managed to avoid the above problem for the most part through “putting on a good face”. While people knew I had something going on, they didn’t see it on me and it basically went away. My wife called it Denial, and I have to admit it may have looked like it, but in actuality, I just didn’t want to think about it. There was a positive to it, there were people that had known me for a while and were not aware of my health issues that were inspired by my attitude. What they didn’t understand is that I am just a hard-headed guy who has never seen the point of feeling bad for myself. Stay busy, stay productive and hope the sun rises tomorrow. My doctor, post-transplant, would tell me that my denial was the best thing that I ever did. I entered the surgery much fitter and stronger than the typical patient. My wife never forgave the doctor for validating the behavior she detested.
Post-transplant I almost put an end to the “how are you feeling” era. I was up walking 2 days after my surgery, not the week that was recommended. I was back at work in 33 days, not the 90 days recommended. I dropped weight and I had color in my face for the first time. I didn’t look sick. For five years I kept it up. People knew that I was feeling good.
One night in 2016 I was serving a dinner at a Masonic function. I prepared a meal for 85 people all by myself. I was in my element, the kitchen. Moving and grooving, flipping pans and slinging some grub was fun for me. While serving the main course I suddenly grew fatigued and my hands cramped into a claw, making any dexterity impossible. I needed help to finish the dinner, people grew concerned. People who didn’t know me pre-transplant, they never saw the sick me. They wanted to know what was the matter. I knew. It was back.
In 2016 I would lose 48% of function in my new kidney. I would experience symptoms that were highly visible. My cramps happened to the point that I couldn’t hide them, my legs were swollen to the point that I could barely walk. I would contract a lung infection in July that would end up hospitalizing me for the entire month. I was out of work and out of options. I applied for disability. It was finally official, I was the sick guy.
By now, the fight was gone. I had hit bottom. That’s when I began this blog. To reap the cathartic, therapeutic benefits of putting my thoughts to paper. I embraced my illness, stopped trying to hide it and find a way to share a bed with it. Now, it is all about accepting that I have a condition that needs to be controlled, embraced and placed front and center. My reward for finally doing this is I have achieved so much peace of mind. Once you are at the very bottom you have nowhere to look but up.
20 years old…” how are you feeling?”. Good
30 years old…” how are you feeling?”. Ok, why do you ask?
40 years old…” how are you feeling?”. I can’t tell you, so I’ll say great
45 years old…” how are you feeling?”. I would love to tell you, but I can’t afford to. I’m ok
52 years old…” how are you feeling””. I’m alive, thanks for asking.
There’s no escaping it anymore. Some days I feel great, other days I have an episode of crippling cramps in front of 5 old ladies while volunteering at the food pantry. Most people I know are aware that I am pursuing a disability claim. I do my best not to look sick otherwise.
The other day I posted a picture on FB of the mountains of snow we have up here for my MA friends. The first person who responded didn’t ask about the snow, instead, she typed…wait for it…
“How are you feeling?”
I replied, “Fine, thanks for asking”.
