Let's Talk Peritoneal Dialysis!
Hey, I'm Jason. I'm a chronically-ill-super-freedom-loving-medical-self-journalist.
Losing (and Winning)
A tear drop consists of … electrolytes and salt.
The chemistry of crying is not concerned with blame or fault.
-Paul Simon
Some days I struggle with writing the hard stuff. I sit here and, instead of writing, I cry. And while certainly cathartic, it’s harder to finish a post when I’m blubbering here in front of this screen. But cathartic it is, not to mention therapeutic. Hand me a tissue.
Last night, I felt sure today would be a day of loss and crying. How could anyone, really, not feel loss as a result of the news of Robin Williams?
I was a quirky kid: weird hair and shy. I wanted to be a big rig driver most of my young life—I would sit down during recess in 3rd grade and read International Truck brochures. Quirky. And so it was Robin Williams entered my life as Mork from Ork and, boom, there was a famous, funny, mostly confident guy from another planet making it here on Earth. If a guy who sat upside down in a chair could make it on our planet, well, so could a weird kid from Chicago. International trucker brochures and all.
Coinciding with last night’s news was the inevitable arrival of my daughter’s entrance today into public school as a kindergartener. Given the chance, I might’ve stolen my own daughter away into some far off land just to avoid the momentous occasion. It felt as if I was losing her.
An actor. A child. Lost. To me.
Of course, there are people who would say “get over it,” or “it’ll be fine.” I’ve already spoken about those people in this post. I know, in fact, it will be fine. But the emotions run strong and deep anyway. Isn’t that interesting? It is possible to “feel the fear and do it anyway.” Despite this, feeling, as a subject all its own, is not something we do very well.
Feeling loss ain’t easy, comparatively speaking.
But today’s losses feel like they’re going to be tomorrow’s wins, putting me at ease. My daughter, well, she’s winning big time. Her school is highly rated, her teachers and staff are amazing. Her life is advancing. My little baby is gone, but my awesome schoolgirl is here. I’m so lucky and thrilled to meet this new kid. So I’m winning, too.
But how do we, as a nation, find a win in the suicide of a man who saved us with laughter? I’m almost reluctant to say … but there’s a chance for a win in his passing. You see, awareness is a gift and we’re more aware today of mental illness than we have ever been (I hope). Depression, she’s a mean one, like my kidney disease or my grandfather’s heart attacks. The difference is awareness and understanding. So let me lay it out again.
Depression is an illness. It is fatal. It has no real cure, only deterrents. There are treatments, just like any other illness, done by doctors: MDs and PhDs and all those other honorarium acronyms of learning. These people are professionals. What’s more, patients aren’t faking it. Your sister’s friend from the hot dog shop isn’t just a quiet kid, she’s cutting her wrists when the pain from her depression is so great, only a blade feels better. I don’t disappear from writing this blog because I don’t like writing, or I’m too busy—I disappear for months on end because I can’t sit here and allow myself to write. Instead I’m laying on my bed.
I find relief. Yes, I take medication. No, I may never stop taking it. My life became complicated when I was very young and my brain has had enough of that damn sad input. I hear people say things like, “You can’t spend your life on antidepressants.” No? Who are these people? These armchair psychologists? Doesn’t matter. Depression is an illness and some illnesses require constant treatment. I can’t imagine, for even a moment, stopping my dialysis because I feel good while I’m doing it. Stopping that which provides relief because of someone else’s idea about how I should spend my life? How obtuse.
How many gifts did Robin Williams give us? I suppose, really, the answer is beyond our comprehension. He worked hard to give us humans freedom. He gave us laughter and sincerity and generosity. And, finally, as he exited, he gave us a chance to understand a misunderstood illness. One final gift.
Depression is real, folks. It’s time we started helping those who are ill. It’s time we came out of the closet and yelled from the mountaintops, “I’m sad. I’m alive! Help me.” Because our children are growing and our actors are dying, and because there’s no shame in sadness. The sooner we allow ourselves to be sad, to allow others to be sad, that’s the day—I’m almost certain—when we start being … happier.
Finally, regarding Mr. Williams, I have only one other thing to say: Shazbat.
And a couple of pieces of business. I don’t own that image of an International Truck – it came from http://www.internationaltrucks.com
Let's Talk Peritoneal Dialysis! 
Thanks Jason! Great post!
Amazing…thanks for speaking your truth..you help so many when you do that…
Awesome message!
Reblogged this on The Manifest-Station and commented:
I love Jason’s blog. He’s been writing about depression, which, as you know, I deal with.
This is from his “about me”
Wait. Before I begin, it is unfortunate that I have to say so, but … I do not want to purchase one of your kidneys. I can’t afford it. I’m not even sure I think that organ sales is cool. Or ethical. In any event, don’t ask me.
Just before April, in 1987, in the middle of my high school’s big Battle of the Classes, my girlfriend Erin broke up with me. I got really, really sick. My mother thought maybe my heart had broken. She was close.
Some 500 tests later (including being measured for an allergy to fava beans), I was still sick. I had experienced damaging, but acute, post streptococcal glomerulonephritis. Basically, I got strep throat, er, strep kidney. That was my junior year. In April of my Senior year, it happened again.
The diagnosis eventually became clear: my kidneys had been in a street fight with some punks, and lost. I was lucky enough to make it through five and a half years of college, and to be attending a school where a world-famous nephrologist (kidney doctor) worked. In a very Arlo Guthrie-esque way, the Doc told me, “Kid. You’re gonna need dialysis.”
And so in January of 1993 my medical team in Kansas City called me to the lobby of the University of Kansas Medical Center. “Kid,” they said, “you need to start dialysis.” And life as I knew it ended abruptly. There’s no mercy when body parts are dying.
Since 1993, I’ve spent two decades of my life running back and forth to thrice-weekly dialysis treatments, had two kidney transplants, two complete kidney transplant rejections and am currently on Peritoneal Dialysis. (I also did some other cool stuff like have part of my parathyroid cut out – stuff like that).
I wanted to write this blog to inform you about the daily perils of living without kidneys. I hope to inform you about the thousands of people who wait, and die waiting, for a kidney transplant. I also plan to explain, in some gory detail, what a horrible thing it is to go to dialysis.
I had lived in secrecy and fear most of my life because of my disease. I never wanted anybody to think less of me. But, at this point, I have four kidneys, so you can only think more of me. The average wait time on a transplant list in California is within the 10-year range (especially for us O blood types). I have a family: wife Rebecca, step-daughter Wallace, daughter Violet and two cats. I am disabled and work at home – taking care of myself. I have almost everything any guy could ask for.
I need a kidney.
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Anyway, I hope you follow his blog and connect. He is incredible.
I only take small issue with the word “sad.” I have heard several “experts” today use that word when describing the profound depression that can be fatal. Sadness is something we all feel, from time to time. It is often a response to a situation or a loss. The kind of “sadness” that kills is really more a despair. A sense of hopelessness. A feeling that ending it is a relief to an utterly powerless prolonged feeling. Sadness is more a “wet” depression while the more malignant type is a “dry” despair. I speak both as a Psychologist as as one who has felt clinical depression and feels a profound sense of sadness AND despair about all the losses in our world today. Robin Williams, those dying in wars all over the world, those dying of Ebola, those struggling against injustice and inequity. There is much in the world to be depressed about, and the more sensitive, aware and feeling one is, the easier it is to slip into a sense of despairing. Robin Williams road that same edge. He was clearly a very feeling man. That was part of his genius and part of his undoing.
Another amazing post Jason.