Forward progress

Things always work out for me. Inexplicably at times. This is not to say that I am in a particularly wonderful place right now. Compared to most people my age, (can I say this with certainty?) I am way beneath the expectations of my years financially and emotionally. I am playing a frenetic game of catch-up in both arenas. My success is questionable.
But I am moving forward.

I’m always moving forward. It is what makes me who I am. When they finally bury me, friends and family will universally declare that I never gave up. This is not braggadocious, it is fact. See, everyone loves to call people fighters, survivors, etc. It is well-intentioned enough, but it doesn’t require toughness to merely stay alive. Survival is the mere act of not dying. It is strength of spirit that determines whether you are a quitter or not. To me, quitting is accepting your station in life and not trying to move forward and overcome it. Strength of spirit allows you to say no to victimhood. To avoid asking “why me?” and start asking “Why not me?”. Strength of spirit allows you to pick yourself up and try again. Strength of spirit is all that I have.
Well, to be fair I have also been blessed with incredible luck.

It’s odd. Most people wouldn’t consider my litany of health problems, which have been the source of most of my problems, lucky. But the evidence is in. I was lucky enough to get two kidney transplants. The odds of finding a compatible second donor were staggeringly not in my favor. But it happened. Less important but significant, I fell into a situation that resulted in my dream job. Sure, illness took it away from me but I still lived it. And that’s better than not having it. And despite a miserable marriage, I lucked out with 4 amazing human beings for children.

As a person who believes that life is not what happens, but how you react to it, the lucky part is that I learned gratitude, perspective, humility, faith and self-awareness. I have learned to recognize lessons in adversity ( and in my own stupidity). In addition, I have learned that no matter how bad things get, one day I will wake up and realize that they somehow got better.

I don’t know when it happened, but in the last couple of weeks I have been lucky enough to recognize how good my life really is.

The relationships, the money, all of the things that I find myself worrying about…that stuff will all work out. I always land on my feet.

A familiar view

It’s 3 AM and I’m wide awake. I’d been admitted at midnight.

The clatter in the halls and the soft, incessant beeping of machines, as familiar as they are to me, could not be ignored. Television wasn’t an option, I had turned it off at 2. Canned laugh tracks weren’t masking the all-too-familiar sounds and sensations of the hospital room. I’d never been in this particular room before, but if hospital rooms were hotels, I’d qualify as a certified TripAdvisor reviewer. Trust me, they’re all the same.

I was preparing myself for a sleepless night. Once a huge deal to me, now it was no big deal. In a former life, being awake at 3 AM was panic time. I would be so worried about being able to carry out the responsibilities of my work day on no sleep that I would obsess about it and be up all night. Alas, that was when my life was structured and meaningful. Now, being up all night barely affected me or my meager itinerary. As I sat up in the uncomfortable, narrow bed I looked forward to the one thing I could always count in during a hospital stay, some good thinking time.

The last 3 days had been a blur. After a 3rd day of failing to get out of bed for more than an hour at a time, shivering under blankets, a non-existent appetite, and experiencing complete exhaustion at completing even the most mundane physical tasks I had forced myself to take a shower at 8 PM. The thought of removing the 3 layers of clothes in order to even get in the shower filled me with dread. I ran the water until the bathroom steamed up a bit and I forced myself to get in. As I did that I was already dreading stepping out of the shower to get dressed. I have never felt so vulnerable to cold as I have lately. I ran the water hot, hotter than usual and hoped that it would wash away whatever toxins were stealing my life force from me. The effort that it took to wash my tired body sent me into a coughing fit. I nearly passed out I was so short of breath. I stayed in the shower longer than usual, enjoying the heat and steam, and still dreading the brief but brutal moments of drying off and getting dressed. After mustering the courage to do so, I found myself so winded by the mere act of getting dressed that I had to take a break. That told me all I needed to know, I was going to the ER. I was finally convinced that this wasn’t just another “episode” that CKD patients go through. I was more than run down, I was sick.

The 30-minute drive to the hospital was easy. Sitting was no problem. Walking the long corridor from the main entrance to the ER proved to be more of a challenge. By the time I got to the registration desk, they were already scribbling “shortness of breath” as the cause of my visit. Never having been to this hospital, I had to go through the entire registration process. By offering up “transplant patient” at the beginning of the visit, I certainly sped things along. I was immediately seen by the best doctor they could offer that graduated from the bottom 3rd of his graduating class. I’m not being cruel, it’s a small NH hospital that is only equipped for so much.

I explained my history, as I had done so many other times. They took vitals and made pages of notes. When they didn’t recognize half of the meds on my carefully crafted list I immediately knew I was in Mayberry R.F.D. They got the chest X-Ray done and, as I suspected, it was pneumonia. They immediately, and by that, I mean in 2 hours, admitted me. Which brings me to where I am now, wide awake, without comfort, body worn down and my mind searching for clarity.

Despite my serene surroundings, I am bombarded by my thoughts. The last month has been a blur of illness and disappointments. Flare-ups of symptoms once under control had dominated my time and energy. Medicinal changes and side effects have sidelined me from almost everything I enjoyed doing. I am annoyed that the pneumonia is back. This is the second time I’ve had it and the last time was the final blow that forced me out of employment. I’m annoyed at the perceived quality of care I am going to receive. The staff is nice, but they clearly have very little experience with a patient with a history such as mine. I have enough free time to embrace some bitterness also. I have been so disappointed by the events of the Friday before. I had gone to meet some friends at a long-anticipated event and despite the excitement and the planning, I had felt so miserable that I had to leave early. I had so many questions and things to learn from these people. But my expectations of tales and laughter and stimulating conversation over a bountiful meal turned out to be sipping ice water and picking away unenthusiastically at a meal that barely interested me at all, trying not to show my guests how nauseous, exhausted, cold and dying to get out of there and into my warm bed at all costs I was. It further annoyed me that I was already “writing off” the events of the past week as “just another setback” and a part of the new reality.

Is this my new reality? The silent room gives me no answers, and I haven’t the strength in my lungs to hold my breath for one. I am at the point where I know that I am losing the person I was just a month ago. It’s not the illness talking, I know myself well enough to look past how I’m feeling now but to the future. I have been able to pull myself up from so many of life’s beatdowns, dusted off and told it to Fuck off. But at that time, the good days greatly outnumbered the bad. Am I prepared for the days when my “episodes” outnumber my good days?

I have to do something. I thought I have been eating healthy. I can do better. I thought I have been making good choices. I have to make better. I thought I was feeling pretty good. I must do something better.

When I get out of here, I think to myself, I need to make some changes.

As expected, I was released with an antibiotic after only one day. Left to fend for myself again. Left with time to think, to assess and re-evaluate. Where is my source of power? How do I tap into it again? What needs to happen to make me again crave the challenges outside of my doors more than the comfort of my own bed?

I need to be a conduit of inspiration, not an object of pity. I don’t think I’m overstating this. This morning, when I looked in the mirror…I looked sick. That I cannot accept.