written on August 18, 2014
I finally let people know about my website over the weekend. And when I say finally, I mean it. It has taken me over a month just to build it and get it ready for action. The response so far has been very positive. It’s nice to know that there are people actually reading what I’ve written, even it is just a bunch of personal essays on my continuing journey through kidney failure.
Some people have been shocked and surprised to hear that I’m in renal failure. Several people have asked why I didn’t tell them sooner. Some have been angry that I never called them to tell them. Hopefully they’ll find it in their hearts to forgive me for not being more open about my situation. In earlier posts, I touched on my reasons briefly. A lot of it had to do with the sense of shame I felt at being “broken,” that somehow maybe I caused all of this. Silence based on shame is definitely not a good thing. I have, thankfully, come to accept the fact that I did not have anything to do with this situation so my shame, although perhaps understandable at the time, is no longer an issue for me.
After three month of dialysis, I’m realizing how difficult it’s been to tell anyone. The day I went into the hospital with renal failure, I naively thought I would get through this without changing my life or lifestyle too drastically. So that first night in the hospital, I figured I’d cruise through this, looking healthy and continuing to be well and therefore wouldn’t have to let anyone know what had happened to me.
Well, as soon as I started dialysis my second night in the hospital, I got smacked in the face with reality. Here I was, hoping my life would stay the same. But the truth was, I would no longer be able to live without the dialysis machine, unless I received a new kidney (which, if you’ve read earlier posts, I will be receiving in October). The day after my first dialysis session I had a good cry sitting in my hospital bed. The enormity of the situation overwhelmed me. How could it not? Realizing that your “new normal” is so jarring to what you’ve come to accept as your day-to-day life really throws you for a loop.
For the first couple of weeks after I went home, I had a lot of problems telling anyone what had happened to me. Mostly because I was so emotional about the whole experience. But it was a hidden emotional response. I don’t think anyone, not even my wife, knew how my emotions were in so much turmoil. I still want to cry anytime I think about it. It’s very painful to think that I’m never going to be the same person I was before. Maybe I’ll be better – maybe a new kidney and the combination of the drugs I’ll have to take will change my body in ways that will make me better – more energy, more strength, more motivation. Is that even possible? As optimistic as I am about the transplant surgery, I wonder constantly what I’m going to be like afterwards. Will my body accept my wife’s kidney? Will my body adjust to having a kidney again and will my immune system allow me to one day taper off my medications so I can feel “normal” again? And then I eventually come to the lingering question that’s been plaguing me since May 18 (the day I went to the ER) – how long do I have left?
Tangent here (well, not really, but it’s not directly related to what’s come before) – have you ever seen the movie “Blade Runner?” The original version, with the narration? I finally saw the Director’s Cut a few years ago and didn’t like it as much as the original 1982 theatrical release. And it was because the Director’s Cut got rid of the narration. I grew up listening to that narration – that movie worked for me because of the narration. My favorite part? When Roy Batty (played so wonderfully by Rutger Hauer) saves Deckard (Harrison Ford) and they sit on the roof, in the rain, and Deckard watches Roy die. And his narration sums up the movie – “all he’d wanted were the same answers the rest of us want – where do I come from? Where am I going? How long have I got?”
I’ve often thought about that quote, especially since that dark day in May. I’ll never have answers – nor do I really want them. I think the asking is more a philosophical exercise. How long do I want? How long do I need? What do I want to do if I’ve got fifty more years? Or only twenty? Or only one?
I’ve never taken the time to create a bucket list – I think it’s more fun to just live life one day at a time. I’m at an age where I can plan things, for me, for my family. I could make a bucket list, but what does that get me? That gives me a list of things I’d like to do. The truth is, I just want to live life every day and to enjoy whatever surprises it may offer. Sure, I love planning things, but I find that once you start planning for things, they tend to spiral out of control and usually add more stress than I need. It’s like when you go on vacation and you book sight-seeing tours and adventure trips and now you’re committed to a schedule that takes away from the spontaneity of visiting a new place. And it adds a level of stress to your day-to-day because you have to remember to be someplace at a certain time.
I often ask myself if my wife, and my kids, and my family and my friends will know how much they mean to me, how much I love them? If I only had a year left, how would I find a way to tell them, or to let them know? Is that even possible? I think some people aren’t even ready or able to accept that kind of truth.
That’s fine. I’m not saying I won’t make it through this. I will, and as Nietzsche said – “that which does not kill us makes us stronger.” I plan on being around for many more years, to see my kids grow up and become adults, to spend a lot of time with my wife, with my family, with my friends.
But I still ask these questions. And every day I’m amazed by the fact that I’ve come to some sort of acceptance of this entire process. As much as it could depress me if I let it, I choose to be happy and positive about the whole experience. I’m not happy about my lack of courage in telling people earlier, but I’m glad that it’s out there now. Will others ever accept my decision to not talk about it? Will they ever understand exactly how I’ve felt about it?
I don’t know. I can’t worry about that – the cards were played as best as I could at the time. No regrets. It was truly the best I could do.