This is the first diary I’ve written in quite some time, and it may well be my last. No fancy graphs. No blizzard of links and sources. All this is is me bearing witness, before my time on this Earth ends.
My mother frequently has called me her “miracle child” based on the number of times the Grim Reaper’s taken a swipe at me with his scythe — and missed. Sherman, set the Wayback Machine for 1977!
1) When I was 6, while swimming I fell into an unexpected hole in a lakebed and nearly drowned. The lifeguard didn’t see me vanish. My mother did. She pulled me out just in time.
2) When I was 13, I was run over by a teacher who didn’t see me sitting at the curb behind her car. I broke half the ribs in my body, punctured a lung, and broke a collarbone, but I somehow survived with only minor permanent injuries.
3) When I was in my 20s, uninsured for the first time and working a temp job with no benefits, I developed an extremely severe peptic ulcer. I was saved by a non-doctor friend who diagnosed me, gave me his medicine (illegally) to keep the ulcer at bay until I came to graduate school — and got on Ohio State’s university health insurance. It was 1.1 mm from completely perforating my duodenum when it was finally diagnosed and treated.
4) When I was in grad school, I developed extremely severe Inflammatory Bowel Disease — ulcerative colitis. I had junk insurance, as was very common in the mid 2000s, so I ran up huge debt while trying desperately to keep it at bay enough to continue my research. Eventually, it reached a point where it no longer responded to treatment. I was given a choice: Colorectal surgery, or death. I couldn’t afford surgery.
A $5000 gift from an extremely generous, well-off friend paid for the surgery co-pays and all my previous medical debt, so I could have a fresh start in my postdoctoral years. I had the surgeries and it saved my life, but it required that I take maintenance medicines for the rest of my life to continue to live. I graduated with my Ph.D. in molecular virology against all odds in 2008.
5) Fast forward to 2013. All I could find was a short-term temp job, and I was laid off right on time. COBRA cost nearly 100% of my unemployment benefits. Then extended unemployment was been revoked thanks to the traitor Patty Murphy and Paul Ryan, and my income was about to be cut to $0. Michigan, where I lived, was an Obamacare refusenik state. I was about to lose my health insurance, my medicine, and my life...when a friend in New York State offered me a spare room.
After 6 months of fighting the state of New York, that tried EVERYTHING it could to keep me off their Medicaid rolls, I got on Expanded Medicaid just in time, and continued to receive my medicine.
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Now we come to the present.
I’m still functionally unemployed after 3 solid years of searching. I’ve had three interviews for actual science jobs — living wage, permanent jobs — in that time. All three would have given me lifesaving health benefits and lasted a long time, perhaps a lifetime. The most recent was this very August, working for a Zika virus lab. I’m an RNA virologist. Zika is right in the center of my wheelhouse. I was a perfect fit for the job.
I was rejected after the interview. No reason at all was given.
But I still have expanded Medicaid, I thought. Long as I had that, I could keep searching. I proposed to my beloved of 10 years. She accepted. We started making marriage plans. She is working-poor, a Comcast customer service rep, with junk insurance of her own, but she gets by. A PhD level job would have allowed us to immediately join our lives.
Then Trump was elected.
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I’ve heard plenty of conflicting reports as to whether he’ll actually go through with repealing Obamacare, but I know this for certain: Paul “Granny Starver” Ryan wants it gone in the first hours Congress is in session, and Medicare with it. Our entire community-oriented health system is on the chopping block.
And if it was repealed root and branch, the following things would happen to me, in this order:
1) I’d lose my Expanded Medicaid in February, when it’s up for renewal. No Expanded Medicaid, no coverage. I’m single and male. You do the math.
2) My medicine would run out 30-90 days later. It being $2500/month, my chances of affording it on zero income is….zero.
3) Out of control inflammation would begin the first full day I didn’t ingest the med. It would very rapidly progress past my rectal cuff to my J-pouch and then hit my bloodstream anywhere from a few weeks to a few months later, with continuous, agonizing, unstoppable pain every hour of the way.
4) I will go into septic shock.
5) I will die in blind agony, as systemic inflammation rips apart my organs one by one.
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I intimately feel how those poor folks on the Titanic felt. On the railings of the ship, staring down at the dark, freezing water, they all were on the same boat, but they knew...when they were dumped into the water, they’d all assuredly drown and freeze to death separately. Lifeboats — a.k.a., private charity — would save a few of them, but most would simply end up nameless victims. As will the 20,000,000 people who will lose healthcare when the ACA is history. I’m no special snowflake. As I point out below, I’m just a nameless schmuck, who will drown the way many of those 20,000,000 drown.
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I’m fresh out of miracles. I did my best against the odds for all my 45 years of life, but I was guaranteed sooner or later to roll a critical failure, and so I did when the Republicans took the trifecta before I got a job that provided health benefits. What, really, is left to me?
1) Nobody I know can afford $2500 a month in medicines, and I have absolutely no talent at crowdfunding. My one attempt, to get my education game Dr. Arch’s Mutations off the ground, was a resounding failure. I have no fan club. No great stream of Twitter and Facebook followers. As I said, I’m simply another nameless schmuck.
2) Very few other countries want someone with no money and a major chronic medical issue. Even my sister in France may not be able to overcome that fundamental rule of immigration. They want the young, the healthy, and most of all, the rich. They don’t want me.
3) There will be no where left to run within the U.S. once Medicaid is gone.
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So now I ask what I do with the remaining months of my life. I guess there really are only two choices: Join the darkness that is so euphemistically called the “alt-right”. put on my Pepe the Frog T-shirt and go crack heads….or be a candle against the hurricane, until I am snuffled out.
I choose the later. Maybe I’ll be able to do just a little bit more good among my friends and family, my loved ones, those who were the miracle that’s kept me alive this long, before my time comes.
And to bear witness of a life, not necessarily well lived, but at least one where I did more good then harm.
The Grim Reaper is there next door now, with a Make America Great Again sticker on his scythe. Waiting patiently for my turn to come.
