You don’t look sick…conclusion

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”.

15 thoughts on “You don’t look sick…conclusion”

  1. Precoffee ramble incoming! My brain is all over the place and I have lots of opinions (bet you never would have guessed that though :P) The snow thing…MY first thought was, damn that’s going to cost a lot to replace the phone, my second thought was… I haven’t talked to him in over 24 hours… I wonder how he is doing. This had nothing to do with your health (this time) it was more 😦 there is a lot of snow, that sucks. Then it was Superman is a creature of habit…where has he been for 24 hours. Did I mention complete ramble? Any, so now to my point…they say there are five stages of grieving, you have written 4…the final stage is acceptance ( although they never go in a step by step order) I think you are finally coming to the acceptance part though…acceptance that people care about you. maybe? I don’t know if you realize it or not, but the day I cried to you about sarah’s death, you checked in on me 3x asking “how are you”? I didn’t feel pity from you, I felt the empathy of a friend that wanted to make sure I was still vertical…. I’m gonna stop rambling now, because I have typed alot and the coffee is finally kicking in….

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  2. This may sound trite, but what I often do when I’m in a particularly foul and bleak mood is say to myself it can always be worse and that if I complain too much then life will really give me something to complain about. I think that is where the acceptance part comes in and it sounds like you are there. As much as living with a chronic condition sucks, being on this side of the dirt is never a bad thing.

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    1. I agree with you but sometimes I think it is hard. Sometimes I think my responses seem glib or shallow as if it’s just a matter of looking at the bright side; I know it is much harder than that but I don’t really have anything else to say. It just comes down to acknowledgement and support.

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  4. A short story from the other side of the fence. I offered to donate a kidney to a friend and went and did all the tests. She was very happy, very ‘up’ because she didn’t have a lot of time – and then they found I wouldn’t be suitable, due to a virus I’d contracted at some stage in my life. My kidneys weren’t good enough; slightly damaged. I couldn’t live with one. She didn’t understand, even though she tried to. It was a blow to both of us. Broken, jagged bits of her anger at me for the false hope I offered still causes stings in my life when I see these moments. Why? Because she’s gone.
    I hope you get another chance. I hope you live a long and stable life. I wish you hope. But don’t ask me how I’m feeling.

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    1. That’s a tough story. In your defense, a recipient is given no guarantees of compatibility. I was very lucky because I have a common blood type and my donor was a perfect match. Another person had offered but was rejected due to the psychiatric exam.
      I’m not sure if my post offended you, and I’m not trying to elicit sympathy. I am just telling my story.
      And I’m very sorry that you are carrying that burden but you’re clearly an amazing person you have offered in the first place

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      1. I apologise for the misunderstanding; in my case I was the right everything, the universal donor, but I couldn’t help my friend. People still ask me how I am, even though I’m still here, but I can’t answer. It’s too hard. I feel as if they’re intruding on something personal. It’s wrong of me, because she was their friend, too. I just keep asking: What if? Why didn’t they offer? the bits of anger that go with the grief nudge into my comments to them, so I avoid the question, slide right by a reasonable response.
        And I think I see why your response to the question is so guarded. Do they really want to know? or is it the obligation people feel? In my case, if they ask and I answer with the full gamut, will this person ever come back? will they change how they feel about me? Am I okay? Yes, but scarred. Once again, I’m sorry it came across as offended. I’m not offended, but I have a sense of abandonment (did she really forgive me?), that I failed somehow, that …
        Maybe in a few more years I’ll be able to move past the next stage of grief, but sometimes it just hits me as fresh as the day they sat me down to tell me …

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      2. That’s quite a burden to bear. It’s unfortunate that you are the only one bearing it. You’re not wrong to wonder why others didn’t step forward.
        You didn’t fail your friend and she didn’t properly treat the generosity of your offer.
        I hope this gets easier for you

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