the youngest one in the room

Shit! I thought to myself. Where am I going to sit? I told my mother that if you want me to go to a football party with your friends can we at least be early.?

“Here,Billy take a seat over here” said a guy with a kind face, a grey beard and a pot belly who I soon learned was named Charlie. I was then greeted by a bunch of people who I vaguely knew, all greeting me and asking me how I was feeling.

Seeing the opportunity to only have to say it once I told the whole room ” I am feeling better thank you for asking”. That seemed to work and they all went back to what they were talking about when I walked in. “They” are Mom’s friends. A kindly bunch who all seem to make my Mother happy, have somehow been involved with caring for my late father, and have apparently have been kept apprised of my health issues by my mother. I really like the ones that I have met, and I have no doubt that I will like Charlie and everyone else that I will meet during the course of this game. I sat back, grabbed a handful of Smartfood and watched the game. I inserted a couple of wise-cracks, after all it was a room that had never heard any of my jokes, and before I knew it half-time was here.

Enter the buffet.

Arlene, our gracious host and dear friend of Mom had laid out quite the spread. The living room cleared and headed for the kitchen. I politely waited for the line to settle. I’m a little claustrophobic in lines and I hate being bumped into. Personal space matters. Besides, I wanted to see some some half-assed analysis by the sportscasters.

I finally elbowed my way into the kitchen. There was beer. Nope you swore off of it for a while.

Ooh! Antipasta! Dude do you know how much salt is in that “salad”? Your legs will swell like Rosie O’Donnell’s ass!

Chips and dip. Oh man you can’t eat a little you’ll open up that fat guy inside you today if you eat them.

I settled on Chicken wings with no sauce, a piece of Rice Ball Fried (shit I have to eat something!), some antipasta without the prosciuto, carrots and Ranch dressing. I grabbed a diet coke and headed back to my seat.

As I picked at my restrained meal I looked around the room at the happy people, loading up on Arlene’s sweet spread, laughing and having a great time. I wondered to myself how many of them are thinking about their blood pressure right now? Who is concerned about their cholesterol? Who is thinking shit! my legs are going to be so blown up tomorrow? Who is thinking about anything but being in the moment? Just me.

It then occurred to me that I am probably the only one in the room, at half-time on a beautiful day in September thinking about my mortality. And here’s the kicker, By at least 20 years I am the youngest person in the room.

 

where are the flowers?

There they sat. Ken and Keith. Two big guys sitting on two small chairs in my dimly lit hospital room. Despite my pleas otherwise, they had come to visit me. Dear friends and Masonic brothers. We call each other brother to denote how devoted we are to each other, especially when one of us is in distress. I had just finished telling them about how I had given a vase of Sunflowers to the Nurses. They were sent by one of my customers and a masonic brother from Maine. A very thoughtful gift.  Ken challenged me on giving them away. They’re just flowers I told him. Not a big deal to me, a big smile for the Nurses.

“What about you though”  he asked. “They were for you. You know your happiness is important also. At some point you need to make you a priority”. What about me? I thought to myself. I was bloated, miserable, tied to an IV bag and sick of being in a goddamn bed. Other than the now donated flowers the only pretty thing in the room was the occasional twenty something nurse that would trickle in and out. Every time they came through they stopped and admired the flowers. They enjoyed them. I felt that they would be better served at the Nurses station so that they could all enjoy them. I thought it might make their tough day a little more pleasant. And by all accounts it did. But Ken was right also, I didn’t put my own happiness first. I’m not sure I even know what happiness is.

It’s July 2016 and I am in the hospital for the 3rd time that year. I had become so affected by edema (excessive swelling in the face, torso and legs) that I had to be admitted. I was being administered massive doses of diuretics to rid me of the excess fluid and bring my BP down to safe levels. If I could have summed up my mood in one 3 word sentence it would have been fuck my life. That morning I had been informed by my Nephrologist that my kidney function was in decline, that my 5 year old transplant was indeed failing. My dream of having a 15 (or longer) year stretch of good health was now gone. Apparently the disease that ruined my original kidneys was now working on round 2. I was angry. Why wasn’t I told that this could happen?

Conversation shifted from the flowers to other things. I was on day three and my days had been a blur of naps, being woken for blood work, different doctors traipsing in, a restricted diet and being up all night. Then I remembered a particularly interesting encounter from the day before.

I relayed to my brothers how my Nephrologist had come into my room, sat down and asked for a favor. He had medical students with him that day and he was having them interview select patients. Dr. G was concerned with the lack of “bedside manner” in today’s interns. There is more to “doctoring” than pills and charts he explained. He said “Bill you have a great story, will you meet my students and let them pull that story out of you?” Where was I going? I agreed.

The students had come in. I made it hard for them. They had to ask me the questions, dig into my history. They didn’t know what they were getting into. As they refined their questions they heard about personal and professional failures due to health. They heard about family issues, kids who wanted Dad to play ball but Dad couldn’t get off the sofa. They heard about losing a house and filing bankruptcy. They heard about the battle between a mind that visualizes a level of performance that the body simply cannot deliver. I got emotional at points, and they did as well. Dr. G would later thank me and tell me that my story had profoundly affected his interns.

When I was done telling Ken and Keith about this I caught Ken’s direct gaze. He excitedly said “you should write about all of this!” We talked about it some more. Maybe it would be cathartic to write about my experiences. Maybe someone would want to read it and possibly benefit from it. Most importantly, it would help me define my situation before the situation defined me.

The next morning I got a visit from my brother in Maine. After we exchanged pleasantries I saw him looking around the room cautiously. I said “let me guess…you want to know where are the flowers? Funny story…”

 

going slow as fast as I can…

The sun is finally coming out. Almost time to take off my flannel shirt.

A horsefly noisily announces itself as it buzzes my ear. Tiny Dragonflies dance on the tall grass that is the un-manicured part of our yard. At the top of my line of vision is “Beaver Hollow” (as I call it), once a vibrant section of forest that is now a desolate acre of dead trees and beaver dams. The beavers provide some entertainment sometimes, but the damage is done. One perk of Beaver Hollow is the Bullfrogs and Herons. The Herons nest in there and are quite majestic when they come in from wherever they go each day and the bullfrogs often get my attention with their cacophony. Of course I can’t hear anything right now over the pounding in my head. I am sitting on a stack of pallets trying to get my wind again.

The woodpile and 15 pound mall (like an axe but heavier) call to me, I assure them that I will be back at it in a moment. I can’t help but notice that the pile is about half of what it was. That would explain the aching in my neck, the calloused hands and the pounding heart that I can feel thumping in my head like a marching band, This woodpile is my therapy, my rehab and one contribution to my mother by way of helping her out. This woodpile is the last tree that my dad took down before he died. She has been looking at it out of her kitchen window for the last 4 years. It needs to go for so many reasons. But it is no small project, the wood is old and very dry and splitting is a bitch. Despite having an industrial log splitter in the garage, I told Mom I am doing it by hand. She thinks I’m nuts and she’s probably right. But she noticed today how much I’ve gotten done.

I have been out of the hospital for 6 weeks now. When I first got here to convalesce I couldn’t navigate a flight of stairs without gasping for breath. I saw that woodpile and I knew that it would be my recovery. When I was a young boy I would split wood for our fireplace every afternoon in the fall. On a clear October or November day the wind would gust and the leaves would swirl around me as I hammered away. I was strong, lean and my lungs were full of clean air. Like a heroin addict looking for that first exhilarating high again I now hope that swinging an axe and stacking a pile will bring back the old me. And in a way it has. I may do three or four logs and then sit down on my pallets for a bit. I may go three days without doing any of it. Some days I might only do a couple and then quit for the day. But I’m doing it. And 6 weeks after not being able to climb stairs I am swinging away with strength and accuracy.

Before the snow falls this pile will be done. And I hope that my last grunting swing, the last splintering sound as the wedge drives through the log, the last echo of the strike bouncing off of the trees all around me reminds me of when I was that young man again. Wearing a tee shirt when everyone else was wearing jackets, working when they were playing, and feeling like I could move mountains. I miss that feeling and I want it back.

I’ve got 2 hours or daylight left let’s see what I can do with it.

the gift that can’t be repaid

“No mom I really don’t feel like going to dinner tonight. I still feel like your friends are looking at me like your loser son.” She’s been trying to get me to mingle with the people up here. It’s not that I’m unsociable or that they’re not nice people. I just don’t like the circumstances and don’t want their judgement.

“Don’t be silly” she said. “they all want to meet you. And you may be interested in hearing the speaker, he’s a double organ transplant recipient and he’s telling his story.

That changes things. I can certainly relate to this topic. I showered and we went. The Community Club. To my surprise there were close to 90 good citizens there. In this town that is quite a turnout. After checking in and a very long social period with a refreshingly non-judgmental group we were seated to a really good BBQ chicken dinner. As volunteers cleaned up many old people flocked to the refreshment table for coffee and pastry. I read the itinerary. Our speaker has had quite the story. I’m a good story, this guy is a fucking great story.

David needed a kidney and a liver. Crohn’s disease had destroyed both. He was, and I hate this word, literally 48 hours from dying when a patient downstairs in ICU slipped from a coma to death. The family was asked if the deceased (their son) would have been interested in donating life-saving organs and they agreed. Their son, who had fallen off of a ladder and sustained a life ending head injury, was a perfect match for David and two other fortunate souls. He saved three lives that day.

The detail and the passion in which David told his story was moving for the whole audience. Of course it hit me right at home. While we had some very different circumstances we shared a lot also. His description of his symptoms as he deteriorated and the despair that went with it echoed mine. His new lease on life and the joy of good health after years of illness also echoed mine. But there were many differences also. He was relying on a cadaver donor, I received my kidney from a live donor. His relationship with the donor family is quite different from mine. The best day of his life was the worst for his donor’s family. When I see my donor, I greet her with gratitude. When David’s donor’s family sees David it is largely accompanied by grief. Of course they are happy that their son’s passing did such good for so many people but it surely is a sobering event for them.

I will write much more about my transplant, and my special relationship with Deb at a later date. It is a formative event of my life. I will part with this, Deb must be wondering why out of nowhere she got a text this morning that simply stated ” please know that I love you for your amazing gift.”

 

the unfortunate reality part 2

In “the unfortunate reality part 1” I detailed my most recent hospital stay and the despair I was feeling. I can say that several weeks later I am feeling better. The pneumonia seems to be subsiding a bit, as predicted by the doctors. When I first got here I couldn’t handle a flight of stairs but now I am breathing pretty well. I blame the NH air but my blood pressure is down and the edema in my legs, a real killer, has virtually gone away. The kicker is I feel like I can go back to work but I know that if I do I will, eventually, get sick again and I will be back to square one. I am embracing feeling better, it is something I haven’t felt in a long time. But I miss working and the prospect of not working full time again really bothers me. For what has made me better is the absence of stress. And I got stressed from working. But I love to work. Hence my dilemma.

By pursuing disability I have resigned myself to a significantly lower monthly income that basically vaporizes my aspirations of owning a home again. Now it looks like it will be a struggle to just get the family back together at all. SSDI isn’t a very big check. I used to make a pretty good living so it’s a big adjustment.

I miss my family a lot, being this far away requires planning. My last visit, while fun was over-scheduled. It felt like a court ordered visitation.

But I also really miss working. I’m one of those guys whose profession was very integral to his identity. Not my income, I’m not a snob I do not think less of those with less nor do I envy those with more. But I accomplished a lot in my career and I am proud of it. I am not particularly bright, I did not go to a great school or do that well at it and I didn’t know what I wanted to do with my life (do I now?) for quite a while. What I did do was choose to change my life at great personal risk. I was stuck in a restaurant job where I was going nowhere and I got sick. More on that later. But let’s say that I was recuperating from surgery, I had some time to think and I made the decision to change my life. And that move to a more “professional” job allowed me to climb a ladder that culminated in a real satisfying career. I became a guy who was integral in decisions, people went to for advice and most important I was able to help people. After that job of 9 years ended I never reached that point again, I became just like everyone else. And now I’m not doing anything. This I do know, when I am able to work again (part time of course) it will be something that in some way allows me to help people. That was what made me walk like a man, it was my cape and I loved to let it blow in the wind.

 

 

Emotions, a form of Kryptonite part 1

One of my favorite Seinfeld episodes is when Jerry’s girlfriend challenges the normally aloof and sarcastic Jerry to get mad. Once he tries he accidentally experiences other emotions, culminating in tears. He is quite unhappy at that development. While it makes good comedy there is something to this. We all have shields and once something permeates them the results can be devastating. Jerry’s sarcasm and aloof mannerism shielded him from the world. I can relate.

I was the king of defense mechanisms. Self-deprecating humor, deflection, the ability to change the subject all helped me cope as my chronic illness, hell, life in general, began to exceed the limits of my anti-depressants. I was always able to present myself as genial, friendly and caring but when it came to myself no one got in. When someone tried to care about me I would deflect it. My shirt would be open enough to reveal the giant “S” on the undershirt and I stuck out my chest and deflected that bullet. I was once called “a sad clown”. When pressed for a definition my friend said you laugh, you make jokes and you love to make others laugh. But inside you’re sad. Boo fucking hoo I thought at that time but I have since come around to it. My happiness is a topic for another day but I will admit that I didn’t like to feel things. I always felt like I was not living my life but instead an onlooker who had access to my eyes. It was a paradox I could never reconcile. It wasn’t all the time but I felt that way enough to notice. And be concerned about it.

Now I have emotions. I experience more, I care more, I am more grateful. I feel in the present more. Maybe because I was given a tremendous gift, the gift of life. When a friend donates an organ to you it certainly challenges your paradigm. The transplant really is the only explanation. I was so grateful for the gift that it fundamentally changed me. The running joke among my friends was that it was because my donor was female. My running joke was that the gender of the donor didn’t matter, but why do I get bitchy once a month and pee sitting down? But seriously, why do I cry so easily? A good song, a fond memory, a moving story and of course a powerful family moment bring a unfamiliar salty discharge to my eyes.

My chronic illness has added to this as well. While I am not expected to die soon, I have most likely thought about my mortality a lot more than most men my age. I don’t have the expectation that I will live a long life and that I have plenty of time to mend fences. Everyone knows now how I feel about them. Even the ones that don’t deserve it…

more later

a little context

The Superman thing. Some may be a little put off by it without context so I need to delve into this.

I did not give myself the nickname of Superman. Nor am I a big fan of comics and superheroes. I will admit that the idea of Superman is enticing. The notion of being indestructible, albeit having one major weakness, while walking among mere mortals fascinates me. And Clark Kent’s bumbling humility is charming. But truth is that others, throughout my adult life have called me this. But it is not a compliment, in some cases it has even been a jab. Chief among the jab-throwers was my wife. But she was not the first.

When I worked extra hours with little sleep at my job I was called it. When I was the first one up after a night of heavy drinking with friends I was called it. When I rolled off of a waitress for the fourth night in a row after meeting her at 1AM, plowed her crops for 2 hours and then got up with her at 7, yup guess what she called me. Well, to be clear she asked me if I was. But it wasn’t until I got sick that the name stuck. And it wasn’t a compliment ever again. It became the moniker of a guy who had a disease that he outwardly seemed to ignore, deny and try to overcome mentally. I was accused of being too optimistic, not aware of my limitations, not listening to my doctors, and being a stubborn ass. As my wife so eloquently put it “keep it up but pretending it isn’t there won’t make it go away.” And she caustically joked, again, that I seem to think I’m Superman. The jokes on you I thought to myself, my real superpower is not listening to other people.I turn inward for strength and I handle things my way.

To further the metaphor, if I am superman then IGA Nephropathy is my Kryptonite. It is an insidious, persistent and incurable kidney disease that attacks the kidneys and results in dialysis or transplant for all involved. It goes in phases. A patient may go for months and even years without any serious decrease in function and then suffer a loss of 10% or more quite suddenly. A good thing, if there is such a thing, about IGA is that it takes its time. So even though I was diagnosed in 1987 it wasn’t until 2008 that it got to the point where I was told that I needed a transplant or my future had a dialysis machine in it. I received a live-donor transplant from a co-worker in 2011. She saved my life. It is a debt I can never repay.

Fast forward to today my Kryoptonite, the IGA has come back. I am again in need of a transplant or a medical advance soon, and  The doctor’s knew this could happen but chose not to tell me. This blog is a painfully autobiographical account of the multitude of events between 1987 and today that were influenced or caused by chronic illness.

more later…