Not all social media savvy, chronically ill people identify with it, myself included. Let me be clear: I don't look poorly upon it. Once more: I do not look poorly upon it. Moreover, if it works for you, if it empowers you, "glam" it up. I encourage individuals to take photographs, document their journeys, because it can help them reclaim their bodies, or – as the original BuzzFeed article stated, much to my chagrin – "reduce the shame of treatment".
Indeed, I have taken my share of photos, chronicling the disease process, but that's just it: I have been "chronicling the disease process". It is, in turns, gritty, harrowing, technical, tearful; I get to interface with some of the most fascinating people I have ever met along the way. I need to remember what it felt like, what the air smelled like, how my friends comforted me or how alone I felt on the bad days. This being said, there is a vast philosophical difference between living with one's disease – and remembering its course – and becoming one's disease. It is the moment when we begin to glamorize the 'lifestyle of going to the doctor', regardless of whether or not it is for empowerment, that we risk becoming our illness, our disability, as opposed to living our lives as the autonomous individuals that we truly are.
* * *
I have Complex Regional Pain Syndrome (CRPS): the most painful disease or affliction known to medical science – and one that any person can get at any time. At this point my condition has become intractable and has become centralized to my spinal cord, which means that it cannot be dislodged and will spread. It directly affects my right leg and lumbar region of my back, showing signs of nascence in my right arm, amongst other things.
I like to use the following analogy: my pain, and all that comes with it, is like a black cloud. It's not part of me; rather, it floats off to the side of me. I know it's there, I see it. It stalks me. Sometimes, it even catches up for a little while and holds me prisoner, but as is its own entity, I am my own person, and I manage to escape.
For the longest time – years, actually – I saw my diagnosis with an incurable, progressive, and degenerative neurological disease as something that supplanted my original identity as a healthy person. Indeed, I went from having 'two legs' to 'one and a half'. My mindset turned from 'I can do this' to 'I don't think that I'm up to doing it'. The only thing that mattered was the disability. My world shrank exponentially.
My life's purpose became about an impossible task: curing the incurable, slaying the unassailable zebra, and it was during my pursuit of mine own Grail that I lost sight of who I was, whom I had become, and all of the deeds of which I was capable. I constantly researched my disability, and immersed myself in the online chronic disease community. Dangerous polypharmy – the use of multi-pharmaceutical combos – led to bizarre, seldom-seen (as in, less than 1:1,000,000) drug interactions. Serotonin syndrome (wherein the brain produces too much serotonin and induces the body into hypertension, fever, seizures, and kidney damage), renal and hepatic insufficiency, and opioid-induced psychosis (following the administration of morphine; depression, thought disorders, hallucinations, delusional beliefs, and suicide are not uncommon). All three were life-threatening.
Of course, this is to say nothing of the legal and supervised use of prescription narcotics, medication upon which I became dependent, and the long two months of opioid withdrawal once that therapy was discontinued. Nor does it speak to the damage that the four-year-use of prescription Non-Steroidal Anti-Inflammitory Drugs (NSAIDs) had upon my GI-tract: internal bleeding, months of chronic GI-problems, painful and time-consuming tests, heavy burdens upon my personal and scholastic life, a highly restrictive diet, and, you guessed it, more drugs.
It's been eight months, I've lost 40 pounds, and I'm still recovering from that drug-induced injury.
* * *
On the back of my apartment door, I have the bracelet of every CRPS-related ER-visit I have made to the University of Iowa Hospitals and Clinics since my 2010 arrival in Iowa City. Photographs of this door have been taken as it has changed, and they have been posted on Instagram from time to time. In addition, I have posted photos of pill bottles, selfies – in hospital garb – taken before, after, and even during procedures, and other such things.
These are not trophies.
There is nothing glamorous about them.
They are all touchstones that I made it through a day. Perhaps it was one of the days so terrible that I had to be injected with a mixture of Ketamine (a horse tranquilizer, NDMA-receptor antagonist, and kappa opioid-receptor agonist), and Versed (a short acting sedative which also creates retrograde amnesia, obliterating any memory of the terrifying hallucinations that often accompany the Ketamine injection). Or another day that I just had enough of counting and sorting the 200+ pills for the week and had simply wanted to stop taking my meds cold turkey, seeing them as some kind of pharmaceutical Moby-Dick. Or yet another day wherein I had spinal nerves 'ablated' – burned – via radio frequency due to osteoarthritic degeneration, a condition that is a result of, and secondary to, the CRPS.
No, the bracelets, pictures, and other objects are part of an ongoing chronicle I am keeping so that, when I leave my apartment for the day – or if I am stuck inside, housebound – I know damned well that I will persevere, no matter what the hours may hold.
This is because I am not my disability, nor does it define me.
This is because the crippling, omnipresent pain, the permanent disability – and all they entail – are nothing more than that single black cloud which follows me around while I keep it real, being as optimistic and badass as possible from day-to-day, like a boss.