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”.

the Genie in the bottle

You know the story. You’re walking on the beach, you stumble on something in the sand, you look down and you see what appears to be a vase. You unearth it and instinctively know to rub it. Suddenly a wisp of smoke escapes from the uncertainly secured cap. You drop it and POOF, before you stands a Genie.

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He offers you 3 wishes. There is a time limit and once a wish is made it can’t be reversed. What do you wish for?

I often toss silly situations like this around in my mind. The what-if is a harmless exercise to entertain different scenarios. Middle-aged guys often joke about harmless stuff like “if I wasn’t married I could probably shag that hot waitress at the Tilted Kilt”. In reality, unless she has “Daddy issues” and you were lucky enough to be wearing his favorite cologne he would likely be rebuffed with great prejudice. The what-if is also dangerous if you are like me and spend a lot of time dwelling on the past. The 3 wishes scenario is a fun one based purely on its implausibility. Considering that it’s already implausible, why don’t I make it more interesting by doing a then and now?

First of all, do I take care of myself first or do I think of others? 20 year old me would jump at the prospect of free wishes and would immediately think of himself and ask for a large sum of money. After all, isn’t life all about money? Cars, electronics, a big house and nice clothes make the man. Even 30 year old me would have bought into that to some degree and 40 years old me would sure want the house if nothing else.

The current me would also think of me first. I have to. Before I can help others I need to secure my own mask. But the current me is not all about money. It took losing everything that I have to take away the allure of the glimmering pile of gold. 25 years of keeping up with the Jones’, and living check to check in jobs that paid well but robbed me of my soul has taught me the concept of enough. I did enough to give the children the childhood they deserved and held on as long as I could. A bankruptcy, a foreclosure and most of my kidney function later I am embracing enough. Maintaining wealth is too much work. I want a  house with lots of wood and animals lying on the many sofas with sunlight streaming in. I want a nice truck that will tow a boat and a couple of snowmobiles. Enough in the bank to not worry about money anymore, but not enough to consume me.

Once offered the second wish, the former me would request Time. Time to work, time to drink after, time to party and not need sleep. A 36 hour day. He had places to go, people to meet and booze to drink. If it was possible to wish to never need sleep, he would have wished for that.

The current me would also ask for time. Not to party, not to drink, not to work. I’ve done that. I want lost time. The time that I spent working late for ungrateful assholes that dangled the carrot of career advancement in front of my nose. The time that I spent stuck in traffic on the way home. The time that I spent on my ass with swollen legs, cramping, and fatigue, drinking beer and watching television. Instead I want all that time back in the form of bedtime stories, tossing the football in the yard, Saturday morning Soccer games, family dinners that I never made it home for. Time spent patiently listening to the rambling stories of an excited child glad to see his/her father. Time to recognize the signs that my wife was struggling and that I was losing her. If possible I want to go back in time, but that’s truly a fantasy.

Now comes the third wish. I know the younger me still had a heart for those around him. He would broadly wish for world peace. He was a good, if not misguided soul. He tried to hide it for many years but for those few that he showed his true self to, he cared.

The current me would also make a wish for the betterment of others. As my third wish I would ask for the validation of Karma, that there be a bus dedicated to it and that I get to be the driver. I would love to personally ensure that all of the good people that put such positive energy into the universe receive it back tenfold. That the kind, the generous, the selfless and the humble are rewarded. And as for the killers, the liars, the cheaters and the greedy…well that’s why the Karma bus has reverse. I need to know, if only for one day that there is some justice in the world.
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It’s a nice fantasy, but I know that no matter how many times I walk on the beach barefoot there is 100% chance that I will step on a stingray or HIV infected needle before I do a bottle.

Still, it’a cool to think about.

 

 

 

 

 

 

 

 

 

Warmer weather

 

I was on Facebook earlier today and I noticed that my sister had changed her profile pic to a shot taken at the beach in August. As I sat in my kitchen freezing I found the idea of the hot sun, a cold  beer in hand and my “official bikini inspector” t shirt very comforting.

Then, true to my character I immediately went to a dark place. A bad beach experience.

One day I was at the beach with a friend. We were walking along, checking out the girls, tossing the frisbee. I noticed that all of the girls were checking him out but I was getting nothing. I was perplexed.

When we got back to the boardwalk I asked him about it. He told me to put a potato in my bathing trunks. I went to the snack bar, pulled the kid aside and slipped him 10 bucks for a whole potato. I surveyed my surroundings, discretely dropped the potato in  and began to walk the beach again.

I attracted attention indeed. I got laughed off the beach. Frustrated, I found my buddy and told him what was going on. He laughed for a minute and then said,

“Dude, the potato goes in the front”.

Now he tells me…