09 Jan Live from Dialysis, Post #5 – Being Sick Sucks (and it doesn’t)

I lay in dialysis, trying to sleep.

I hear four TVs (each playing something different), three conversations, someone coughing, a disposal bin is being kicked across the floor, the dialysis machines all merge together, something is being unwrapped somewhere, beeping and whirring, and a sea of 1980’s-style rudimentary computer-songs (my Commodore 64 would feel very at home here)…

If you’ve ever spent a night in a hospital, it’s like that. Only there are 25 other patients in your room.

And yet, I sleep.

My nurses and techs and housekeepers are each pretty wonderful. There are close to 40 altogether. I still don’t know everyones’ names (6 months into being here 15 hours per week) and that’s ok (some still don’t know mine), but I feel remarkably comfortable now. I know what to expect, I know the routine. I often “forget” that I am on dialysis, getting caught up in reading or writing or whatever… until I look up for my distractions.  It’s not painful while I sit here. Annoying at times, un-ignorable, but not painful.

And as I go through life, there are times that I forget that I’m sick altogether. There are days that I feel, more or less, like I am just me, living and loving my life.

And then I notice that it feels like I am walking through mud. I notice that my whole body is tingling and feeling like it’s going numb. I notice that I itch all over and I am aching like an old man. I have another headache and I hear myself talking about it like it’s a given…

And there are times that my heart, my emotional heart, aches for no reason at all. Tear well up for no good reason, and my mind reasons with the universe to the effect of “why me? why draw out this torture of living with all this bullshit everyday? how long do I really have before this a minute-to-minute challenge and who wants to live like that?” There are moments where I would rather not.

A few months ago, just after I let my world know what was happening with my health, I embarked on the strange and deeply touching journey of hearing everyone I know (and quite a few people I don’t know) acknowledge my struggle. To say “my struggle” doesn’t really do it justice… it felt often like a profound acknowledgement of our shared human-ness, of our frailty, of our desperate fear of death and illness, of our unstoppable resiliency, of so many things…

Somewhere along the way (I think I was at the Woodstock Farmer’s Market), I saw a dear friend. She is a breast cancer survivor, a fact that I vaguely knew previously. Well, she reminded me. And she asked how I was doing, and I shared with her how supported I felt, how surprised and how held I felt in the heart of the world… and she said, “I know. Being sick was the best thing that ever happened to me.”

Wow. Words that still echo for me everyday.

Is it a rollercoaster? Yes.  The highs? higher. The plunges more extreme? Certainly. And yet, a glorious ride.

And each of my dialysis compatriots here, also having their version of “my struggle” and each of this support team showing up everyday to keep these machines riding out their delicate balancing acts, giving each of us these magical, life-extending treatments…

And each person who stops me in the street, at the store, at my kids’ school: each has their own rollercoaster.