written on July 9, 2014
Another day, another chance to do some writing at Coffee Bean. I usually head over here before the kids come home from daycare; gives me an opportunity to get some things out of my head. Not that I couldn’t write at home – it just feels more natural to be sitting somewhere other than home – feels more like a job this way. Although it’s also dessert time, what with my blueberry pomegranate ice blended that I tend to consume when I’m here (sometimes I get whipped cream, but not always).
I know I’m pretty much only writing blog entries these days, but it’s fun for me. Something I haven’t done in a long time – stream of consciousness writing. It’s not for everyone. Considering I used to use writing as my therapy, it’s nice to kind of wade back into those waters.
I managed to tell my writer’s group about my kidney problems last night. I find it very satisfying to tell people what’s been going on. Most people who know me have no idea what I’ve been going through. As I’ve mentioned in other blog entries, a lot of that has to do with this sense of shame I feel. That somehow I’ve failed at living because I contracted a kidney disease that destroyed my kidneys and now I have to take a kidney from another healthy human (in this case, the woman I love) and through it all I feel somehow like a broken person. I’m facing something that has no viable solution that I can do myself. And being someone who likes to do things himself, be it fixing things or making things worse or just cleaning up what others before me have wrought, I like that sense of control in knowing that I can do things on my own. I’m self-sufficient, but when it comes to my kidneys, it’s all out of my control now.
There’s also this sense that maybe the best time to tell others has passed. At some point I think I’ll be so far into this thing that telling people will be more of an afterthought. A lot of it is still a reaction to the depression I went through at the end of 2005. That slide into depression had started years before but didn’t really come out until December of ’05, mostly because of the production of “Pool Party” (a low-budget feature film I directed and producer, and mostly paid for with my own money). I was way over my head in debt, homeless and living on friends’ couches and I just felt so overwhelmed the depression grabbed hold and the next four months were some of the worst moments of my life. There were two friends who stuck by me through all of it – who were there to listen when I needed to talk, to give me advice about what not to do and advice about how to feel better. But there were others who I tried to talk to, who, when they found out what was going on with me, they basically shut down and didn’t want to speak to me. It took me a few years to understand why, and to recognize the behavior in myself - the behavior of tuning out people who have health problems that I either didn’t understand or were afraid of. I’ve lost a few friends along the way because of that. People who wanted me to be there for them as they went through their own trials and tribulations. And I couldn’t do it. How I wish I could take it back. Especially now, with my own health issues that some people don’t want to talk about.
People look at me and wonder if I’m really sick, because I sure don’t look like it. If you didn’t see the catheter sticking out of my chest or have me tell you that I’m on dialysis three times a week, you’d never think anything was wrong with me. But that’s true for a lot of diseases, isn’t it? How many people get diagnosed with cancer but look perfectly healthy? It’s only when they start treatment, or when the cancer really takes hold that their appearance starts to change. Even me, the week before renal failure, I was looking pretty bad, bloated and pale with a headache that would not stop. Looking back, I’m surprised I managed to work that entire week. How many days had my kidneys been failing before I finally made it to the ER? How much permanent damage did I do to my kidneys? Or my heart? Or my brain?
Hopefully not too much. I know I damaged the kidneys – pieces of them were showing up in my urine while I was in the hospital (all microscopic, nothing you could see with the naked eye). But did I damage other organs or tissues somehow? Am I continuing to do damage with this uncontrollable high blood pressure?
No one knows. And no one will know until I start living through whatever symptoms show up because of potential damage.
I try not to think about it too much. Like I’ve been saying to everyone since this started, I have to take it one day at a time. I don’t really have any other choice.
And today is another day. So is tomorrow. To everyone who has gone through something like this, especially those who didn’t get the support they wanted or needed, I understand what you’re going through. At least now I do. Six months ago, not so much. Amazing how your life, your understanding, can change so suddenly. The day they put the catheter in me and started dialysis (May 19, two months ago already, can you believe it?!?), I knew there was no turning back for me. Not everyone has that experience – several people manage to make it through their health issues and come out the other side healthy again. I hope I can do the same. But that’s a story for another day…