The Monday after my last post I felt incredibly supported by the epatient community (and many of the providers that make up that community too). I felt a bit of a high thinking – Yes! This is what advocacy is about! I’m not crazy! Other people feel this too! This means something!
Then the next day, my emotions took a marked turn and I started to feel bitter or just more frustrated. The patients get it. But the providers don’t.
I went to an appointment and walked out with the express feeling that I was being asked to sacrifice more of myself, my time, my energy. After, I went to the pharmacy, where because CVS bought Target Pharmacy – CVS which I expressly left because of their horrible service – my prescription was not filled and my insurance was messed up. And all I could think is that there is no more of me to give. There is nothing left of me. I have given it all to health and healthcare and been sucked into the maelstrom of tests and medicines and procedures, doctors and therapists, industry and politics. I have given everything and I have no idea who I am.
I give my fingers each day to finger pricks for the glucose meter; my stomach and thighs and arms to injections of insulin; my shoulder, jaw, elbow, knee, spine to surgery; my eyes to procedures; my intestines to the handful of medicines I take every day; my GI tract from top to bottom to procedures; my reproductive system to more procedures; my hands and elbows to steroid shots; my spine to medial branch nerve injections; my jaw and teeth, my smile essentially to incredibly painful orthodontia (twice with surgery) and even more procedures; my joints to physical therapy; almost every body part to X-rays and CT scans and MRIs; myself to needles, tourniquets, vials, tubes; my veins to IVs with any number of toxins; my feet to procedures and special foot wear and the constant anxiety that I will lose them; my lungs to inhalers; my head and shoulders to more injections; my nerves to electromyograms; my heart to monitors and sonograms; my brain; and my mind. I’ve given my knowledge and sense of being.
And most of all I’ve given my dignity.
I’ve done it all willingly in the hopes that I could find my way back to a point in which I lived a meaningful life. I’ve done it to contribute to the wider knowledge of medical science, that others might be helped one day to live a more meaningful life. I’ve done it unwillingly when all I wanted to was to leave a life where I know myself to be a burden – stripping me of any last semblance of dignity I might have had remaining.
But I have nothing left to give of myself. And I don’t know who I am anymore because I’ve given it all away.
Even if from this moment on I seek to find myself again – some part of it will always be wrapped in, tethered to, enmeshed with health and healthcare, doctors and nurses, insurance and pharmaceutical companies, tech companies and patient advocacy. There is no way around it.
Medicine stole my childhood as a physician and pharmacists daughter. It stole my adulthood with never ending diagnoses. I somehow let it hijack my career and it will rob me of much of my future. My past and my future have been and will be literally and figuratively lain bare before the healthcare system over and over in perpetuity. Even in my death, having willed my body to science, I will be subject to the same cold, sterile tables that consume my life now.
I look back and I think of all the things I could have been. I wanted to be an astronaut when I was a kid (my brother told me if there was a problem with the ship I’d be sucked out and my body turned inside out – so that dream didn’t last long). I wanted to be a singer or actress for a bit – I thought maybe Cosette from Les Mis (I sang “there is a castle on a cloud” endlessly) or maybe when I was older Eponine (“On My Own”) or Christine from Phantom of the Opera (though my voice would never be so sweet) – I envied my mother’s soprano voice in the choir. I thought at some point a CEO – Disney would be my dream. When I was a figure skater, I thought maybe I could be an Olympian (a dream quickly lost because I was quite frankly terrible). When I flew planes, I thought maybe I could be an aviatrix. Or maybe I thought for a moment I should be more into science like my parents and brother. I wanted to be a mother, to adopt (that dream long gone with a mental health record like mine). I thought politics might be the place for me and even started out as a poli sci major – but that world is no place for an idealist. I thought of pursuing international law – I had passion for human rights, but somehow I never quite found my way in that career. Maybe I could have been a writer (beyond a blog) or an editor – I love to read, and love to nitpick even more. Or I could have been things I didn’t think of – a historian, a podcaster, a zoologist, a designer, a store owner, an office worker, a restaurateur, a hacker, a spy… But I became none of those things.
I became a patient.
Here is the point where people leap to tell me that I am so young and I still have the opportunity to become who I want to be and all the flowery statements of hope that this society likes to romanticize. Here is where they quote George Eliot, “It is never too late to become who you might have been.” Please, please, I beg of you not to go there, not to tell me what I could be (if I want it enough).
Because the reality is that I will always be a patient. I cannot be divorced from it. Every day is russian roulette with type 1 diabetes. Every moment my body degrades just a little bit more. It does not mean that I can’t be strong and push limits. But limits nevertheless must be recognized. There are simply things I cannot be.
Those of us with borderline personality disorder are known to struggle with a sense of self and identity. In fact, it’s in the DSM 5 criteria for diagnosis. We are known to have an enduring sense of emptiness. So perhaps these musings are just a manifestation of a malfunctioning brain.
Then again, I suspect that I am not the only patient that feels this way – feels that they have given so much, too much, of themselves to medicine. I suspect that other patients too feel they have sacrificed themselves and that they too wonder who they are beyond it. I suspect it’s why some become what we might think of as “professional patients” – speaking at conferences and writing blogs and engaging in tweet chats. Because that’s what we know and who we have become to an extent.
I don’t think I want to be a professional patient though. I don’t want to go from stage to stage telling my story over and over again. Is that a life, to relive the pieces of life that were stolen? And yet…
Who am I but that?