The Tao of Bill

“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.”

 

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.

 

 

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

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…

 

Another book is done. Nice ending. What am I going to read next?

I just had a great idea and I wrote it down. This notebook is getting pretty full.

I was talking to a friend and I fired off a joke. “That was quick” he said. “How much coffee have you had today?” Truth is one cup. Coffee does not equal clarity anymore. Apparently not working does.

I hate this and I love this. I hate that I’m not working, not contributing to the finances for my family. It doesn’t matter that my wife encouraged this. It’s wrong. A man works. But I also love that I am finally feeling better.

Making the decision to file for Social Security Disability Insurance was one of the most difficult decisions in my life. There are so many considerations, some may make immediate sense and some may not. I think most, men especially can relate to the implications of not working. It feels like I am choosing an easy way out, to just stop working. Being financially unstable carries with it a further burden, I’m not providing for myself or the people that depend on me. This deeply goes against my nature.

I have to do nothing until the application is approved, which is not guaranteed. I can’t work at all. I have had to ask my mother for assistance, something I have never done before. And that assistance means going to live with her, 100 miles away from my family.

I have to come to grips with my disappointment in myself, the feeling of being a failure. A let down to my wife and family. Oddly, my family was the most in favor of this plan. In fact I haven’t met one person who knows my situation that doesn’t think it’s the best thing for me.

But I feel so much better. And my mind…I have never felt as all there mentally as I am right now. I am reading books at a furious pace, my mind is fertile with ideas for writing projects. I am sleeping at night and I have cut way back on the alcohol. I am experiencing clarity. I’ve heard of it but never experienced it. I can only attribute this new and exciting development to one thing. Because I have now gotten to the point where I can only go up; that all expectations have been taken off of me; that I finally chose a course of action and have (almost) come to terms with it; I am free of that which has plagued me my entire adult life. Worry. I have been bearing a terrible weight for the longest time as my obligations increased, my time frame diminished and my health deteriorated. Worry is a miserable but necessary evil of life. So many of us struggle, live check to check and worry about the next unexpected brick to the forehead will be.

People with positive thoughts live longer, it’s a fact. My family and friends have convinced me that they would rather have me around longer. It is a new and exciting prospect for me. Maybe I will take my newfound clarity and write a book about it.

I have been home for 2 weeks now. But the events of my last hospital visit still race through my mind. Hospital stays for me are not memorable, I have done it too many times. I know the routine as well as some of the nurses. But this one was different. The great Epiphany. The realization hit that denial, positive thinking and good ‘ole piss and vinegar weren’t going to cut it anymore. My illness needed to be reckoned with as a worthy adversary.

About a month ago I told my wife that I would be hospitalized soon. I knew by how I felt. It was a familiar feeling; one that any renal patient knows too well but others don’t get. I felt washed out, always tired. After work I was sofa-bound. Going anywhere or doing anything after work was not even considered. Not long after I told her this I caught the “Office cold”. The one that took my coworkers down for a day had kicked me square in the teeth. For 2 days before I went to the ER, I was easily winded and coughing violently and constantly. I couldn’t sleep. Finally, after barely getting through birthday dinner with my family, I went to the ER. I drove myself. I was admitted .

Hospital ER’s are like Dr’s offices. You don’t go right in you go to another room. In the ER that is triage. I hate triage. You have to answer a million redundant questions. Just read my fucking history for Christ’s sake. You wait forever to see if you will be admitted. And it’s cold. As if you suddenly came to life on a slab in a morgue . I suppose a happier me would have thought of wet bathing suit when the sun goes down at the lake cold.

The chest X ray easily showed Pneumonia. I suspected that. A suppressed immune system plus a cold equals pneumonia. But I wasn’t prepared for the lab results. While I knew my kidney function was not great I wasn’t prepared for how badly it had deteriorated. A healthy creatine is under 1.  2 years ago post transplant I was a healthy .75. Last year I jumped to 2.5 (not good)where it remained for a while. That day my creatine was 3.8. I was admitted.

After the first day of “orientation” where I answer a thousand questions over and over, like the one about harming yourself,  I settled into the hospital routine of bed checks, vitals, blood work and being woken constantly to remind me that I needed to rest. What was not routine was a lack of a diagnosis. They had no idea what kind of pneumonia I had and could not explain the drop in kidney function. I was there 13 days, 12 before I could walk one lap around the hospital floor without an extreme coughing fit. On the 13th day, still without a diagnosis I was transferred to another hospital, one that could hopefully do better. Another hospital, same old bullshit and I was seriously depressed.

That much time on my hands is never a good thing. When the only voice you hear is your own it is easy to have a biased opinion. All I could think about how screwed I was. I knew that the pneumonia would go away eventually but the kidney stuff was scaring me. At my current level of kidney function I was now stage 4. I was soon going to be as sick as I was before my transplant. But unlike before I felt none of the drive and determination I used to have to beat it. “Where did it go, where’s the old Bill?” my wife would later ask me. I didn’t know but this Bill was looking at dialysis, another transplant or a medical breakthrough if I was lucky. I was most certainly looking at finally (reluctantly) going on disability and the hope of getting the family back together under one roof was fading fast. For the first time in my life I didn’t give a shit. I had reached the bottom. A stared at my swollen legs, the omnipresent IV bag, the view from the window that doesn’t change and the depleted vein on my arm and thought “this is my life”.

As I sit on the sofa at my mother’s house, 100 miles away from my family I am still thinking the same thing.