“Affliction is a well-visited destination, but one on no one’s published itinerary. Our visas are universally stamped (in invisible ink) at birth (and, often, before birth) in our mutable flesh. But, until we arrive at the border and gaze over the wall, we have no true notion of what to expect. Some of us are swept across the frontier before we have even a chance to raise a hand in farewell. If we’re very lucky, we’re given some advance warning and can get an oar in the water.”—Elizabeth Boleman-Herring
By Way of Being
By Elizabeth Boleman-Herring
“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”―Susan Sontag, Illness as Metaphor
“I seem to myself, as in a dream,/An accidental guest in this dreadful body.” —Anna Akhmatova, The Complete Poems of Anna Akhmatova
“Every sickness has an alien quality, a feeling of invasion and loss of control that is evident in the language we use about it.”―Siri Hustvedt, The Shaking Woman, or A History of My Nerves
PENDLETON South Carolina—(Weekly Hubris)—June 2018—Affliction is a well-visited destination, but one on no one’s published itinerary. Our visas are universally stamped (in invisible ink) at birth (and, often, before birth) in our mutable flesh. But, until we arrive at the border and gaze over the wall, we have no true notion of what to expect. Some of us are swept across the frontier before we have even a chance to raise a hand in farewell. If we’re very lucky, we’re given some advance warning and can get an oar in the water.
What to pack, what not? Is there a handy phrase book? What do the natives eat, and not? Are there excursions, perhaps to the volcano? May I take my support animal? Are round-trip tickets available, ever? Is there a pool?
I remembered today, without Googling her, that Susan Sontag had discussed Affliction’s bleak terrain, and its maddening conventions, long before I (and, of course, Dostoevsky, Tolstoy, Akhmatova, and legions of other writers before she: the Russians are well acquainted with Affliction, and their acquaintance is vociferous).
Over the course of my illness this spring, I have been writing, in my head; imposing a thin overlay of narrative upon the chaos consuming me.
I’ve compiled a sketchy travelogue, but not a guide book, and I have not written it for the ages, nor really for publication. At one point, runically, on Facebook, I squeaked forth, “I am dying, Egypt” and, for the first time in my life, I meant it: I did not think I’d make it through March, then April, then May. But here I am, still, if lame and arrhythmic of heart. Here I am . . . . still “abroad,” still among The Afflicted, still unable to return home.
The true nature of what felled me is still unknowable, and may be always. For a decade, I had three-day-long headaches. Suddenly, I also had a sedimentation rate of 100. Then, within a matter of days, a new neurologist, who didn’t know me from Eve, dropped me into a iatrogenic blender, ordering MRI’s and cranial arterial biopsies, and putting me on high-dose prednisone for weeks.
He and his RN told me that they needed, urgently, to rule out Giant Cell Arteritis, a condition which fit my symptoms. They told me, emphatically, that GCA could blind me without warning, and/or cause a sudden stroke. Only an idiot, they implied, would not hasten to have biopsies/take prednisone. This idiot, up until that moment a skeptic who always insisted on a second opinion, succumbed to their certainty.
So, now, in the wake of this preternaturally Western tsunami, I am suddenly limping due to pain in both hips, pushing myself up from chairs, experiencing AFib, and taking blood thinners for life.
The headaches—not due to GCA—are gone for the time being, but I would readily exchange my current raft of symptoms for them. The devil you know. The devil that permits you to walk around the block. Not these new, unbearable devils who’ve added 20 years to my age in two months.
Advancing through my seventh decade, I am well acquainted with illness, but I have never been hit by something like this. As a child, in Southern Europe, I contracted amoebic dysentery. In my 20s, I suffered through my first bout of RA, perhaps following Rheumatic Fever. In my 30s, for three years, I was down and out with chronic mononucleosis. In my mid-50s, my lumbar spine broke neatly in two. And Depression has been my lifelong dis-comfort animal.
I even have a handy, personal pain scale: 10, exploding ovarian cysts, migraines, and pain meds delivered into the sole of one’s foot via large needles; 8, a broken back; 6, toothache, titanium implants in jaws, and hornet stings; 4, lumbar muscle spasms. Everything else? Lower-digit numbers and just the cost of doing business among the embodied.
This spring, however, I was Rxed a drug I can never take again, prednisone: in my case, it affected every bodily system and deranged every human capability. My facial bones disappeared beneath fat; my hair fell out in its hundreds; my vision blurred (permanently, it seems); migraines replaced my headaches; sleep left me, entirely; mania visited at all hours; and, beginning with my left hip, weight-bearing perambulation became more and more painful; then, impossible.
For a month, I did not think I would survive. I was in the ER three times in one week for migraine, and received shots and IV’s of Toradol and Phenergan, two other drugs I can never take again.
At that point, I sought out a Chinese doctor and acupuncturist, and got some help in the form of non-lethal-to-me interventions. Still, I was no longer truly in the land of the living. If I had had to share my body with the pain I suffered in March and April, I would have jumped ship.
My new Nurse Practitioner watched all this unfold, as though in slow motion, but kept assuring me that, given quite a lot of time, she was confident I would recover.
I said good-bye to a few long-distance, analog friends I thought I would not see again.
But my recurring unvoiced refrain, the earworm that accompanied me through hell, was: “I can’t be dying. We’re building a house. I have to hang the paintings: Dean won’t know where or how to hang the paintings.”
Balderdash, of course. Paintings matter for naught when you have an appointment in Samarra (the capital of Affliction).
We all plan—and my husband and I have planned—for limited, previously scheduled sojourns in the Far Land of Affliction. We have both, not simultaneously, been beached heretofore on these grim shores: for gall bladder, hernia, and kidney stone surgeries; for innumerable eye surgeries; for spinal fusion and foot surgery; for pneumonia.
Not till this spring, however, did one of us believe she was not coming back to the land of her birth. Not till this spring did I learn that, when death appears, when one departs for Affliction permanently, one can in no way “prepare,” or “anticipate,” or exert one’s will. One is simply . . . taken. One departs.
I hung on for dear life, for the wild ride, hoping my body still had enough integrity (and that integer within integrity, “grit”) to come out on the other, any other, side.
And if I begin to mix my metaphors, it is because all similes, all metaphors, all narrative finally deserted me this spring.
Death, which we all know full well is our final, shared destination, always, always, always comes as something of a surprise. In my own case, it came as a total surprise: I was seemingly well, with headaches, one week; the next, I could not raise my head, nor bear the light, nor create sentences.
Friends and acquaintances tried to speak with me by phone after I took off on my forced march. I could talk to no one. My short term memory vanished; memory in toto erased itself as time went on and by. I had conversations I do not recall. I wrote and edited and read through the white nights, but have no memory of it.
My laptop, at the foot of my bed—I crawled to it—was my one window on the world: it was awake when I was, and as barely sentient.
Two of my close friends who are, themselves, living with Stage IV illness, were the only people I could communicate with.
One close, old analog friend cooked for us for three weeks; another drove me to the ER.
In that ER one night, waiting impatiently for the drugs that would deliver me from the cleaver in my left temple, a student nurse was being lectured, at length, on the correct protocol for starting an IV. Finally, in desperation, I said, as calmly as I could, “If you do not give me the medicine now, I will begin screaming.” The older nurse mistook me for someone who actually had control over, say, screaming, and began to lecture me. I told her that I was just letting her know what would come out of my mouth, willy-nilly, if she didn’t step on it: I had no ability, going forward, to monitor my behavior. Pain dictates; I was just taking dictation. The student nurse met my eye, smiled like the angel she was, and plunged in a needle, bless her.
I remember nothing else until the Torodol made it into my bloodstream. From the ER, my chauffeur and I went straight to Five Guys for a hamburger. I hadn’t eaten in days. My hands shook so much I couldn’t hold my drink. Give me red meat, given me gluten in spades, give me caffeine and sugar: in the Land of Affliction, all niceties vanish.
But . . . that is all now in the recent past, and happened deep in the interior of that other country: the land I am currently trying my damndest to leave.
Oddly, in the wake of this illness, I find myself no longer a land mammal. Weight-bearing and walking are beyond me. I am a fish out of water. In water, however, I am still a fish. Fortunately, Affliction does have a pool, and it is occasionally heated.
At the rec center, my heart sputtering in its new arrythmic language, I float with my chartreuse-green noodle, and my pink-and-grey water weights. For 45 minutes, I am without pain, without grief.
Yesterday, when Dean and I arrived, there was a man my age in the pool, swimming deliberate laps. Observing him more closely, I noticed he was using only his arms and, on occasion, had to take a short break to get his breath back.
At the far end of the pool, I saw a wheelchair, and the mechanized chair-lift those of us not able-bodied use to more closely approach the water.
After an hour, the man motioned to the lifeguard, who lowered the seat of the lift. I could not see how the man in the pool would split the difference, and get into the lift, but he did so. It was a feat of grace and strength accomplished in two attempts: where he found the resolve for the second, I do not know. Restored to his wheelchair, he placed legs withered long, long ago by polio gently into place, and then sped off, wheeled, towards the exit doors.
A lifetime ago, when the Salk vaccine removed from my own life the specter of polio, my parents had blocked for me one sure route to Affliction. My companion in the pool, who spent his childhood in just-post-war Europe, had not been so fortunate.
For another 15 minutes, I trod water, still afflicted, but chastened.
In this alien land, lamentably, I have so much company. But to go on living here, even in exile, whether it is permanent or temporary, is more bearable today. I am not where I was back in April: from here, I can make out a ferry back to the other side.
There is a coda to this essay. A day after I wrote it, again in the pool, I introduced myself to the man with the wheelchair, and found that he now owns the very house I sold, in Pendleton, South Carolina, after I moved north to New Jersey in 2001. What are the odds of that, I ask you?
And what are the odds that the borders of the Land of Affliction are, alas, permeable? Once one checks in, one never really leaves? If I am permitted to stamp my exit visa and depart for home one day soon, I must forever be prepared to return, at a moment’s notice, or without even a moment’s notice. I may hang the paintings this year, but it is not promised nor, now, so firmly expected.
PS Of course, life not being, ever, zero sum, the migraines have returned, and the new orthopod advises hip replacement surgery within 18 months’ time.
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