We’re Turning Five!
I never thought I would be able to keep a blog going this long by pulling stories out of my head. It’s pretty close to 250. That’s a lot of stories. (Don’t worry, there are plenty more.)
To be honest, I never thought I would put my medical life out there for public scrutiny. What happened was a complete (and quick) 180. Given my extreme risk aversion, these kinds of quick reversals are not usually on the table, and they are definitely not things I am comfortable with. ut it seemed necessary at the time.
Here’s how it started.
A former endocrinologist reached out to me about being the patient interview for a guest lecture at a local medical school. I agreed.
I don’t actually remember making the decision that it should be an unlimited conversation, but I think it went kind of like this: “Well, my body is weird. It challenges conventional wisdom and breaks textbook norms. They will have patients like me and it will be important that they are open and flexible in their thinking and treatment approach so that they do their best for all their patients, but especially the difficult ones like me. If I want them to become the kind of clinicians I would see (and I will need ones this age as I get older), I have to show them the real, whole picture, warts, rebellion, near deaths, and all.”
So, I did.
Before that day, I didn’t particularly want to talk about it. Any of it. That first patient interview changed everything. I could see the impact I had had. In their silence and the willingness to stay for more questions, and the thank yous we got as my endo and I walked to lunch from the auditorium. It was the first time that all the difficulties and, frankly, the bull---- that was my life – the experience I never wanted -- could be used to help people. And it felt good. Freeing. Cathartic.
Here's how it’s going.
The blog followed naturally, and I hoped every story I put out into the public domain would help at least one or two people. But there is one glaring piece I have been avoiding. I’ve talked about being a child patient who almost died and for a long time, wasn’t sure of regaining mobility. I have talked a lot about my current, fairly stable, status, the things that everyone experiences – frustrations and tech and how to manage adult life as a chronic patient. The mostly missing piece is the transition, six years of purposeful non-compliance (yes, I know that word is falling out of favor, but it still applies to what I did because what I did was conscious and deliberate), where I was basically committing passive suicide because, from what everyone was yelling at me, if I didn’t make myself into what everybody else wanted me to be, I was going to die soon anyway. So, what was the point?
That’s the hardest part – where I have to take responsibility for my own part in my situation even as those who contributed to my poor outcomes will never be held accountable. Perhaps after five years, I will finally be ready to start examining that can of worms.
It’s been a journey. I am looking forward to what comes next, whatever that is. But I wanted to thank all my readers, whether you’ve read one post or all of them. Without you, my inflection point would not have amounted to much.