“Are your eyes closed?”
“Yes they are. Jess, why do you lie? It scares me when you lie.”
“You’re going to fall.”
And, like clockwork, I fall, semiconscious to the sidewalk on the corner of Pennsylvania and Constitution.
Somewhere above me someone is concerned. “Is she ok?” “Yes” “No, really, is she ok?” “Yes, she has a heart problem.” “Really? Is she ok?” “Yes, I’ve got this.” “You’re sure?” “I’m sure.” Yes, lady, he has this. He always has it. No matter how embarrassed he is. No matter how inconvenienced he is. He has this.
So, what’s wrong with me? Postural Orthostatic Tachycardia Syndrome. POTS. What’s that mean? It means that sometimes when I stand, my heart rate doubles, my blood pressure drops, and I pass out.
Apparently most people grow out of this. But I’m not most people. I’m 25. I’ve had POTS since, if I’m honest, I was about 9. When I finally got it diagnosed at 21, my condition became legitimate. I’ve seen the statistics; the odds that this goes away after fifteen years are almost nonexistent. I won’t die, but sometimes I’ll want to. As my cardiologist put it, “I’m [his] problem.” I’m the one he can’t fix. But that makes sense. I have an idiopathic condition. It lies somewhere between the heart, autonomic nervous system, and mind. It’s a veritable no-mans land of drugs and specialists where there’s no cure and very little understanding.
During my last “bad” episode, my friend called to check up on me: “Jess, if they make you go to the hospital I’m not going to fight them. Plus, isn’t that what you do?” No, that isn’t what I do. Yes, I have a degree in Health Systems Administration. Yes, I’m an “expert” on Health Information Technology. But that doesn’t change the fact that I’m a horrible patient. That I carry my medical records around with me in a hot pink binder. That I hate hospitals.
And I always have. If I had my way, I’d keep everyone out of them. It’s why I “do” health IT. See, I’ve been in lots of hospitals - from community hospitals to major academic medical centers. They're filled with well intentioned, highly trained, people. Unfortunately the mechanisms these care facilities have put in place don't actually connect the people within, let alone between, instances of care.
I used to think I’d trade anything for perfect health. Now, I don’t know if I would. See, I’m happy. I have people. I have a future. And I know that my life has been influenced by my sickness. Without it, I wouldn’t understand. I wouldn’t understand powerlessness. I wouldn’t understand frustration. I wouldn’t understand that the system is broken.
How broken? During one stay, despite my credentials, I ended up semiconscious at the bottom of a flight of stairs, in tears, begging to go home. See, in the moments I’m a patient, I can’t manage my life. And, despite their credentials (on this visit: a MD/MBA, a MPH, and three MHSAs), my friends can’t manage it for me. Can you imagine someone without this support system navigating the bureaucracy that is healthcare? I don't know how they do it.
Luckily this is only one side of my coin— I’m healthy enough to have a day job advising the people that chart the course of American health policy. The philosopher Herodotus got it right: “the greater the man, the greater the misfortune,” or, as our friend Peter Parker put it “with great power comes great responsibility.” I know that the weaker I get, the stronger I become. The weaker I get, the more I understand that my care continuum isn't the only one with flaws. The weaker I get, the more I understand that together, we can change our health system. That the whole is greater than the sum of its parts.
Back under the glow of the US Capitol, I hear my friend:
“Jess, you’re broken. But I’m broken too. We’re all broken.”
“You think that together we make a whole person?”
“Yeah, Jess, together we’re a whole person.”
And with that, he picks me up. And carries me home.
This is the story behind my Walking Gallery Jacket: "Is She Alright"