Hey, I'm Jason. I'm a chronically-ill-super-freedom-loving-medical-self-journalist.
First off, I’m in debt. This is only my third post in my “week of posts,” and the response has been, well … inspirational. I’m not pulling internet numbers like some of those mom-blogs, those things are crazy popular–internet sensations! But I am on a roll with the blog (totally different from blogrolls, for you troglodytes; neither is edible). This week has been significant not because of numbers but because of responses. On Facebook and Twitter, even right here at jasonbhamlin.com, you, my fearless reader, have lifted me, you have praised me and you have supported me. What can I say? Thank you.
And keep sharing! There are millions of people who still don’t know what dialysis is, you and I must spread the word. Now let’s get through this Lisa Ling thing before I write another “short” post.
We watched a This America with Lisa Ling episode last night—it’s probably from more than a year ago. You’re going to say, “Oh, that one. yeah, I saw that already.” I can’t keep track of things like cable network programming.
The episode follows a young man stricken with mental disability. His mother kept him alive through his adolescence, only for him to end up in prison for 20 years on what looks like a trumped-up charge of sex offenses. With turrets syndrome and a host of other diagnoses, this kid never had a chance. Today, he still lives on the Sex Offender’s List and is confined to a half-way house … for life. He wears an ankle tracker to monitor his movements; he can’t leave his own front yard–it is what it is.
I can relate. Dialysis is the only way I can stay alive. It’s that, or a transplant. Neither is easy. I can stand at the edge of my health, but I can never get too far. And if I step away from dialysis? My sentence: end of life—it is what it is.
I felt a certain camaraderie with this young man on OWN. Not because he and I are imprisoned—we’re not. It was because of his attitude. Each time he was asked about his situation, he’d say, “It’s fine, I’m doing great … at least I can still do … ”
It is possible to be disabled and be content. That dialysis machine pictured here isn’t a prison—it is freedom. Kidney disease is not a death sentence.
I have moaned a bit lately about setbacks to my health. But there is an up side to dialysis (even with its complications).
Each morning I wake to the warm California sun. My family is sleeping, I disconnect from the freedom machine (I just thought of that, it rocks) and spend time at the computer. My friends are there online, we chat. I spend the day taking care of myself, dialyzing and watching my girls grow. The thing is, when people ask me how I’m doing I just always say, I’m doing great. If I’m alive enough to answer the question, then I figure I’m doing great. I said to a friend on Facebook just yesterday: getting in the ring means getting knocked down but it also means a shot at the championship. I’m an ironic champion; a champion of kidney failure, but a champion nonetheless.
There are those who desire I answer the question (how are you?) in more detail, more honestly, I suppose. I might go around saying things like my catheter hurts or I can’t swim in the public pool, but that ain’t my style. Complaining about kidney disease is best left to this blog and my medical team. Enjoying every moment, even if I can’t leave my own bedroom for a few hours each night, that’s the payout.
I never forget why I’m still here on earth. That’s a lesson I may not have learned without dialysis. I know my limits—within them I find beauty.
Within them I find beauty.