mental clarity…but at what cost?

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.

the unfortunate reality part 1

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.