I enjoy writing stories. I wrote my first story in fourth grade. It was two large, chunky, static paragraphs, less than a page long, about a man killing a monster in the room of a haunted inn, taken loosely from the lyrics, “you can check in any time you want, but you can never leave.” It took me two days to bang out on my dad’s old computer, one of those monsters in its own right, a fifty pound steel box with a detachable keyboard that ate aptly named floppy disks. Writing is, and always has been, an escape.
This is not a story.
Once, I knew a girl who loved writing stories every bit as me. She lived in Colorado, I in Wisconsin, then Illinois. We had a romance of words, as that is all distance (and her husband) would allow. She would give me assignments; a topic, a sentence or a word, as a prompt, which I would go about writing a poem or a story based on that prompt. It was fantastic. I was enthused to create new worlds and ideas and songs, and I knew I would always have a fan that would read them, devour them, love them.
That ended. Badly.
Recently, however, I’ve found a place online that gives prompts to which you can write, post you response (along with a hundred others), and maybe, just maybe, people will read it. And they have. I’ve had the fun of being creative, stretching my storytelling muscles, and people actually read it. I’ve never dreamt about being famous or rich, I simply want people to read and be entertained by my stupid ramblings. It’s fulfilling, in my own little way. I’ve written a few things that I’m actually kind of proud of, and some things that I am not. But that’s how it goes when you exercise; some days you run a marathon and win, some days you bang your face against the pavement and bleed.
Some prompts carry a weight, though, that is larger than 2000 words. They are too open ended, and have too much baggage to unpack.
First, isolation, and now, scars.
Isolation stirred up so many emotional spider webs I didn’t know whether I wanted to say anything about it at all. I’ve sat and thought about it for days. Stewed. Churned. Bubbled. I certainly need to, but it’s scary, slipping away from my temporary personas, all in my head, and bleeding on a page.
I don’t have time or money for a therapist. So, lucky you, I’m laying on your couch, taking up your valuable time. Sorry, I need to.
I have been on and off dialysis all my life. Some people like using the term “all my life” when talking about something they’ve dealt with for a decade or three, but is not truly all their lives. This began when I was a baby, before I grew myself a conscious or developed into an actual human being, and it continues now. I’ve had reprieves; nine years here, two there. Three kidney transplants that ultimately failed, as they tend to do. They don’t last forever, even with the luckiest recipients. I have scars. Lots of scars. My stomach is distended and lumpy from organs being pushed this way and that to make room for foreign objects.
This has, of course, put a few kinks in life. My father waked on my first year because I was too much responsibility to deal with. I missed a lot of school. I essentially grew up in a children’s hospital. When Bill Cosby visited the Children’s Mercy Hospital I rode an elevator with him, which means I was in an elevator with an (alleged) rapist.
Don’t worry, he didn’t rape me.
Funny story, because I like funny stories, even when I’m being serious. My first transplant, in 1987, was placed on my right side, leaving a scar, diagonal and three inches long, on my flank. My second transplant, in 1999, was directly opposite, leaving a beautifully symmetrical three inch twin. The third transplant was more difficult, as scar tissue gradually leaves less and less places to put a healthy fist sized ball of meat, and they opted for right in the middle, leaving a long scar, six to seven inches, leading from my sternum down past my navel. It was long, and jagged, and completely obliterated my navel.
University of Madison has a pretty incredible transplant team. One of the best in the country. It also has damn fine hospital food, to which I can attest, becoming quite the connoisseur of hospital dining. They are a learning hospital and, as such, get students, the best and the brightest, from all over the world. I sat in the office of one of these doctors, a man from Germany, fresh of the boat (most likely, plane). He had me lie down on his table while he peered closely at my fresh scar, stapled and red and tender. After a moment of studying me he looked up, looked me in the eye, somberly, and said in his thick German accent –
“You know, people who lose their belly buttons tend to go insane. They lose their identities. They forget who they are.”
I don’t know how many Jewish prisoners he had to go through to figure that out, but it scared the shit out of me.
I eventually got my belly button back and did not go insane. That’s the good news. The bad news is I have lots of scars, and scar tissue, and now no more places to put a fourth kidney. I have been denied another transplant from Madison and the University of Chicago, as they foresee this complication. They have suggested I go elsewhere, but no more room is no more room. This is it. This is my life. I better get used to it.
Which brings us to isolation.
I have only known two other people on dialysis, like me. I was six, and they were a few years older or younger than me, so it’s not necessarily what you would call a friendship. One went home to Colorado (at the time, Kansas City was the best, and only, pediatric renal program in the middle of the country, so parents as far as Utah gravitated to the midwest), and the other, a girl with long brown hair and the same last name as I (thus instant bonding) died.
Dialysis is a very private experience. A dialysis center is, as far as my experience has been, a large open room. A central station is commonly in the middle, and is surrounded by a dozen or more sets of dialyzer (a tall standing machine that appears to be a Dr. Who villain), and a large reclinable uncomfortable leather chair. Each set is a world unto itself; patients come in, get business done, and leave. There is no socialization or camaraderie.
I am isolated, three times a week, four hours a day. I have no visitors or friends. I’ve never been able to sit and bitch about the process with people who know my pains and fear. The social worker who occasionally checks in is consistently put off that I’m not having the time of my life.
Which comes to my fear. I am certain, barring cancer, car crash, or erotic auto asphyxiation, that I know exactly how I am going to die. I have, for years, watched the elderly, and not so elderly, come in, day after day, week after week. More often than not they are bussed in from homes. They have no visitors, no family. They sit, and I watch them lose weight, wither, and one day, never return.
This is how I’m going to die.
And because I can’t get a kidney, my timeline has been significantly shortened.
The average time of an adult living on dialysis, with no transplant, is six to eight years. That is an average; that is, some lives are significantly shorter, and some lucky ones go twenty more. Granted, most adults that begin dialysis are on their downward slopes already, but those are still statistics I am not comfortable with.
My timeline is short. It changes priorities.
One, I want to take my daughter to Disney World, which will be a challenge, given my difficulties. A single dad can’t take his kid to dialysis with him in strange towns.
I want to let go of anger.
I want to write.
I don’t want to be alone.
Between work, dialysis, and being dad, I have very little time to personal adult fun time. Or therapy. Both of which I need.
I value the people in my life that call me friend. They come and go, as friends do. If you stay, though, you have my heart. I do not want to harbor anger. I want to love, and make those by me feel loved.
I’ve lost the train of thought, not that there was much of one to begin with. Simply that, yes, there are friends that have gone on. I was alone through my divorce. I was alone when my last kidney failed. I don’t want to be angry about that. I want to let it go. I want my energies to be loving my daughter. I want my energies to be loving the one or two other people in my life that I have.
But every day I feel alone. That word, isolation, carries so much baggage.
I feel guilty complaining. I’ve had three transplants, and that’s very lucky. I live in the richest country in the world and have never known hunger or poverty. I have no fears of ebola, AIDS, or drug fueled African warlords. I am okay. I don’t want to make waves. But I do, I feel alone.
So, therapist, what do you think? THere’s more than that, of course, but this is only the first hour, and my hour’s up.