01/18/2021
Miles had been looking kind of peaky for a couple of weeks, complaining of an upset stomach and pain in his abdomen. He’d always been the kind of person whose stress settled in his intestines – but I was starting to worry just a bit, because it wasn’t getting better.
We went to the movies anyway, because we’ve always been the kind of people who try to solve any problem by going to the movies. As we were leaving the theater, Miles suddenly said, “I think I need to go to the hospital.”[1] Jay was out of town, and I was expecting a new Greenery Press author for dinner that night, but Miles’s pallor and the urgency in his voice were a red light and siren.
I dropped Ben at home, with directions on how to greet the author and explain the situation. This was a lot to ask of introverted, socially anxious Ben, who was all of sixteen at the time, but I learned later that he had managed the situation like a pro, arranging for takeout and making casual conversation. Meanwhile, I drove Miles to the hospital.
I looked at his chart while he was out getting X-rayed. “Bright but tired-looking 20-year-old man presenting with abdominal pain, fever, fatigue.” The doctor diagnosed appendicitis and the nurses began prepping him for emergency surgery. I settled in for a long uncomfortable wait.
Hours later, the surgeon found me. “It wasn’t appendicitis,” he said. “His large intestine was inflamed. Looks like it could be Crohn’s Disease or ulcerative colitis. We closed him back up. He needs to be here for a day or two, and then he’ll need to see a gastroenterologist for ongoing treatment.”
I didn’t know what Crohn’s Disease was (this was long before a medical encyclopedia was a couple of keystrokes away for anyone with a phone), but the doctor’s solemn demeanor made it clear that it was not a good thing.
Fortunately, I have a dear friend who is a doctor specializing in internal medicine, and I’d put him on Miles’s chart as his primary care doctor, since Miles’s regular doctor was two hours away in Sacramento. Charles arrived at the hospital early the next morning. After talking to the surgeon, he diagnosed Crohn’s and handed me a large box of Kleenex.
He gave me a quick rundown of what the disease was: an autoimmune reaction in which the body attacks the intestinal tissues. “Crohn’s is a bad disease,” he told me. (That moment still sticks in my mind, more than two decades later, in full multisensory detail: Charles’s Midwestern twang, the fluorescent lights at the nursing station, the smell of alcohol and ailing bodies.) “But we’re getting better treatments all the time. This is going to be okay.”
And it was, sort of. The next few years are a blur, with Miles in and out of the hospital as a series of doctors tried to stop the inflammatory process. First they tried various types of expensive and side-effect-laden medication. When that didn’t work, they hospitalized him for two weeks with a PICC line[2] feeding protein, fat, glucose, fluids and and vitamins into a vein, in what turned out to be an overly optimistic hope that his intestines would heal themselves if given a chance to rest.
Out of the blur, a few memories swim into focus. All are tinged with anxiety, with occasional spikes of blind terror.
- … Sitting in his hospital room with his girlfriend Ashley, talking quietly as he slept. Dozing off to the gentle click-click-click of stones into cups as they played Mancala.
- … Learning that I could no longer bear to read anything that included conflict, violence or death: P.G. Wodehouse and Don Marquis saved my sanity for a year or two.
- … Stepping into the living room late one night, just in time to hear the front gate slamming: Prednisone had given usually calm Miles a hair-trigger temper, which had led to one of the few serious fights he and Ben have ever had. Ben had stomped out in a rage, and I paid for a new latch for the gate.
- … Laughing with Miles as he announced that he was one of the few men in the world who knew what it was like to have a period[3]: the fistula that had opened along the original surgical site needed its dressing changed several times a day, plus the Prednisone made him pissy, puffy and miserable. The cramps, of course, were a given, as they are for any Crohn’s patient.
- … Standing alone in the shower, the only place in the house with visual and sound privacy, doubled over and sobbing uncontrollably. He had lost thirty pounds in a few weeks, his muscles were wasting, and I was certain he was going to die.
- … A call from Miles, who was well enough to be back in college, in the UC Irvine theater program. He was telling me about his current acting role. “I could have gotten the lead,” he said. “But I couldn’t, because there’s a nude scene and the fistula scar is still pretty gross.” Three thoughts flashing through my mind in millisecond succession: Oh, he could have gotten the lead, I’m so proud!, and Shit, he can’t because of his scar, that’s not fair!, and …A NUDE SCENE?!
- … Getting caught in an utterly unforeseen April blizzard on our way to Ashland, Oregon, for a long weekend of theater at the Oregon Shakespeare Festival. Miles was newly out of the hospital after the surgery that excised chunks of both his large and small intestines, Ben had not yet learned to drive, and I was dressed in jeans, a t-shirt, a cardigan, and loafers with no socks. By some miracle, we managed to get through the fast-accumulating drifts to find an auto parts store – and by another miracle, they actually had chains for my car in stock. (Hey, I lived in San Francisco at the time. Who needs chains in San Francisco?) Somehow, between the three of us – the sick one, the underdressed one and the underskilled one – we got the chains on the car, drove through the deepening snow, and made it to Ashland, missing our matinee but unfrostbitten and in time for the rest of our shows.
- … At Christmas dinner, handing all our sweet-potato-stuffed baked apples down the table to Miles, because he had a new lesion in his throat and the apples were the only part of the meal that were digestible and soft enough that he could eat them. I was scheduled to fly out in two days for a literary conference where I was hoping for a job interview or two, and he ended up back in the hospital: the only time through all this awfulness that I wasn’t there to be whatever small help or company I could offer. It nearly killed me.
- … Leaving Jay in the car while I ran into the bank to deposit a check, and having him tell me later, “I wasn’t sure if you were coming back.” And thinking, ‘Hm, I wish I’d thought of that,” because I couldn’t fix anything and couldn’t bear the way things were.
I think Miles’s illness was the beginning of the end of Jay’s and my relationship. I was shouldering a burden that felt intolerable, and he didn’t know (or, maybe, care? – I wasn’t in any state to figure that out) how to help me. The next few years were a jangle of depression, frustration and logistical calculation as I tried to figure out how the finances of a breakup could work without leaving either of us homeless.
In a long life filled with relationships of all types, it was the only really ugly breakup I’ve ever had, although Jay and I eventually managed to pull something a bit like a friendship out of the chaos.
The moment of unbearable grief in the shower was the first, but not the last, time I discovered that all the parental clichés of wanting to take a child’s illness or sadness or trauma or, god forbid, death, for yourself, to save your kid from having to feel the hard truths of life – they’re all completely true. Even now, if I could have his Crohn’s for him, I would.
But until he got sick, Miles had led a charmed life: he was smart, handsome, emotionally on an even keel, and got on well at school and at home. Serious illness changed all that; he was no longer a golden boy.
A few years after the surgery, one of his final projects in school was directing and starring in a production of Ionesco’s “Exit the King,” about a successful and arrogant monarch who learns that he is dying. I dashed out of the room during the curtain call to ugly-cry in the ladies’ room, but during the play I noticed that Miles was the only actor in the college-aged cast who understood what it felt like to confront one’s own mortality.
Between when I started writing this essay and now, as I finish it, Miles has become a father. The day will come that Miles will wish he could take on Felix’s burdens for him, and I’ll wish I could take on Miles’s burden of unhappiness over whatever issues are troubling Felix. We can’t, though.
That’s probably just as well, as sadness and travail are what make humans human. But it doesn’t stop parents from wishing: we don’t care if we’re costing our kids the chance to learn from experience, we just want them to be happy.
It’s not a reasonable wish, nor is it really for their own good. It just is.
[1] We learned later that the tub of popcorn we’d shared was almost certainly the triggering factor that took him over into “this is serious” territory.
[2] Peripherally Inserted Central Catheter.
[3] This was years before any widespread understanding that trans men often have periods.
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