I am sick—by most measures, a particularly exasperating and unproductive kind of sick. Although as compliant as can be, nonetheless for my doctors I am a most difficult patient, whose chronic illness remains only partially understood despite hundreds of hours attention from the specialists and consultants caught up in my case. For my insurance company, I am expensive, maddeningly so—requiring almost two dozen prescriptions for pills, respules, inhalers, and medical equipment, with no end in sight (indeed each year brings still more). In addition, I require regular tests, scans, and specialist follow-ups as my doctors continue to search for that elusive byte of objective data that might just give them the answer, the name, a sense of mastery over my failing body—even if that mastery is only the certainty that, yes, my body will continue to fail.
I am, nonetheless, the luckiest guy I know.
I have been “sickly” my whole life, subject to more than my share of infections, surgeries and debility. But I first became truly “sick” about two years ago, in the aftermath of one of those frequent infections—a non-descript virus—which left in its wake a body somehow short-circuited.
Much of the first year of my care was devoted to attempting to identify what was happening, ruling out, one after another, a wide range of ticking-time-bomb diagnoses. It was also spent in the pharmaceutical kitchen seeking out the proper recipe of medicines and therapies to keep me vaguely functional: three medicines to keep my wildly fluctuating blood pressure from going too high or too low; physical therapy to help me stop falling up and down stairs now that solid ground had become a rolling ocean; various medieval contraptions to keep blood volumes where they were meant to be; medicines whose names sound like Simpsons parodies (Provigil!) designed to keep me from getting wholly sucked into the fog that invades my brain a couple of hours after waking. And so on.
I have been sickly my whole life, but also very lucky. Because I have never wanted for care.
After a year, things had stabilized, and there was good reason to believe that while a cure might not be in the offing, at least symptoms would remain largely as they were for the foreseeable future. But then, a few months ago, things began to unravel further, with no more explanation and no more answers than we had two years ago.
In just the last couple of months, I have had a pulmonary function test, a bone marrow biopsy, and some dark version of an EMG that involves high-frequency repetitive nerve “stimulation.” All three of these tests require highly-trained individuals to administer the tests, not to mention additional experts and time for their interpretation. The pulmonary function test showed a marked decline in respiratory function. The second two tests, however, failed to provide any answers as to why.
Still I maintain you will not find someone more fortunate than me.
I say so not because I am profoundly at peace with my lot (anyone who knows me would laugh at the suggestion). Nor have I found religion, seeking my reward for suffering in some afterlife. Neither do I have any faith that a cure or even a definitive diagnosis is coming. No, my good fortune rests in knowing that I have access to all the health case I need and that the chances of my losing that access remains relatively slim, even as my body betrays me in new ways.
As long as I can keep working, I will have my insurance through my job. And if I worked in almost any other field—and occupied within that field any other position other than that of “tenured professor”—I would have reason to be very anxious about my future right now. Unlike so many others, I did not lose my job following the crash of 2008. Nor is my job even now at risk, despite declining enrollments in the Humanities in the wake of that crash and other factors that are driving students away. I did not lose my job when I got sick. In fact, I didn’t even miss a day of work. You see, I was on sabbatical when I first got struck down. While it wasn’t the most productive sabbatical in terms of my scholarship (to put it mildly), it allowed me to focus on what became a new full-time job, one of constant tests, appointments, and worrying.
Even now, I continue to do my job. Not as well as I used to, to be sure. Certainly I am slower at getting things done, as pain or mobility or memory challenges leave me behind in all things. But I am adept with technology, and I have found new ways to remain available to students and colleagues in spirit even as I often cannot be there in the flesh.
And because I am a tenured professor, whose job is as secure as any position in America aside from Supreme Court Justice, I have the flexibility and autonomy to adjust my schedule as needed to make appointments and show up for tests as the ongoing efforts on my behalf continue.
Tell me, am I not the luckiest guy you know?
Now, you can question the validity of tenure, and certainly there are reasons to question its fairness at a time when fewer and fewer academics will ever secure its benefits, as universities increasingly shift to a contingent, insecure workforce and positions like mine become as rare as the dodo. But is that not but one more marker of my incredible fortune? Had I been born a couple of decades later, I would almost certainly not have tenure today. Which means, I would almost certainly not have insurance today. Which means…
What would my life look like right now if I did not have the certainty that my care was ensured—that my medicines, tests, appointments and equipment would all be readily affordable thanks to a job from which I could not be fired… Well, barring, of course, gross misconduct or gross negligence. The “misconduct” I do not worry about: I am devoted to my job, my students and my colleagues and would do nothing to harm them. The “negligence,” on the other hand, has become a growing source of anxiety as I watch my powers diminish. Will there come a time when I cannot finish grading my papers? When I cannot teach my classes? When I cannot get out of bed at all?
But even there, I am lucky enough to be able to temporarily tamp down those anxieties before they fully articulate themselves, secure in the security of my position.
Yes, I am lucky. But of course, I am no luckier than any one of millions who live in societies which recognize health care as a right—societies that see providing care to all citizens as a fundamental reason for the existence of society. Someone reading this from France, Botswana, or Sri Lanka might reasonably question my sense of my good fortune, because for them health care is a universal right. But anyone from America will surely agree with my self-assessment—particularly the many millions for whom secure, quality health care is just out of reach, even with the remarkable affordances of the soon-to-be-extinct Affordable Care Act.
So perhaps I am not so lucky after all. If I were a citizen of Denmark, Trinidad and Tobago, or Argentina, my care would not be dependent on having inadvertently won the chronically ill employment lottery.
And in truth, now in my fifties, it is getting harder and harder not to think about a future in which I can no longer work. Who would possibly wish to sell me insurance on the “open market,” once Congress gets rid of the Affordable Care Act? If forced to choose between the drugs that help me breathe and those that help me navigate the cognitive fog and those that help me temper the neuropathies that run roughshod across my body, how would I make that decision? If offered the prospect of a test that might, finally, provide the answers we have been looking for, would I take on the financial burden knowing that the odds are that it would provide the same non-answers we already know so well?
Still, even enmeshed in these dark thoughts about the future, I am profoundly lucky. After all, I have a spouse who continues to enjoy my company even as I am surely less good company than once I was. She is extremely healthy and very well employed. Her insurance will cover me if I were to lose my own. As long as …
Which reminds me, I must buy her flowers. After all, it is thanks to her that I remain the luckiest man on the face of the earth.
Jared Gardner is a professor and patient at the Ohio State University.