Note to readers: This essay is about illness, death, and dying. It was written for a writing class I’m taking because I’m still trying to process this information and needed to let it out. For those who’ve already read it and reached out, I’m sorry for posting this warning too late. I’m okay right now. I hope to be okay for a while. I’m hoping my brain will stop bringing me to the bad place of living with uncertainty during uncertain times. The MRI showed I’m still at the beginning of what I hope to be a multiple decade’s long process.
The voices in my head were so loud I hadn’t even noticed her sitting there until she spoke. Separated by a dozen or so chairs — half of them wrapped in restraints to keep people from getting too close to each other — we both sat in our hospital-issued scrubs, personal effects in clear plastic bags by our sides. “Good luck,” she said as a technician walked in. “You too.”
Take a deep breath and hold it for the count of 20.
“Let’s re-check in six weeks,” the doctor had said by email. “I suggest you follow up with a specialist,” she said eight weeks later by letter. “Google said 10 years,” I reported to the specialist three weeks later. “That’s overly pessimistic,” he said. “But going forward it does mean we’ll follow up every six months to look at the numbers.”
Numbers have been a big part of my life for the past 15 months as I find myself increasingly living in the spaces between them, spaces that have gotten even smaller since early 2020 with the introduction of COVID-19. Circling inside my already crowded head is the knowledge I can get a test within 72 hours. If I’m lucky I can get results in 24 to 48. Symptoms show up between 3 and 5 days. I’ll need to quarantine between 10 and 14. More than 527,000 people have died in the US as of today, over 16,000 of them in Massachusetts.
Now exhale and breathe.
“Are you claustrophobic?” the technician asked as he taped tubing to my hand for the IV that required nearly a half dozen attempts and a second technician, and left immediate and pronounced bruising. “We’ll soon find out,” I answered before he led me through a series of locked double doors, a deep thumping sound getting louder in the otherwise empty and silent hallways.
I’m no expert, but hearing that you have a rare, incurable, and progressive disease is probably never easy. You become greedy for the time you just selfishly assumed you had. And I don’t mean time in a seize every moment way, but more of a continue to ignore it and do whatever you want even if it’s doing absolutely nothing way. I want to mindlessly scroll Twitter, watch TV with my kids, and comfortably put things off until later. I don’t want to be mindful. I don’t want to check off bucket list items like the world’s worst to do list.
Another deep breath and hold for 20.
“I think the last two scans are wrong, but I know how anxious you are so I’d like to schedule an MRI to be sure,” said my doctor this past summer during a follow up from our first six month check up. “I want you to be able to make any necessary plans.” We’d been talking about anxiety during our virtual visit and I’d told him mine had gone completely off the charts, a combination of finding out I was sick and suddenly terrified I could get much sicker. “You’re not alone,” he said. “I’m hearing that a lot.”
A global health emergency just a few weeks after my diagnosis shifted time again. Where I had once inwardly pleaded for 20 years, I began negotiating at least 10, before finally and humbly resigning to just try to make it through the next year, all the while keeping this news a secret from most everyone I knew until I knew more, but in particular my 11 and 14 year old children who were, like countless others, increasingly aware of mortality.
“It’ll take about 30 minutes or so, but if you need to come out sooner just push this button and we’ll get you out immediately,” said the technician above the din of the magnets. He placed the device in my hand and strapped another to my abdomen as I lay on the table looking past him to the painted blue sky above. “Try to relax,” he said as I was slowly pulled into the machine, eyes now closed.
When your anxious teenager asks if she’s going to die, you tell her she’s too young to worry about such a thing. Please relax. You’ll be fine. Everything’s going to be okay. We’re going to make it through this, you say. You repeat it over and over because you know it’s not always true, but you need it to be. You say it because you know you’re also talking to yourself. You say it because you suspect you’re bad at keeping secrets.
Big breath and hold.
I’m not good with looming. My anxious brain, already busy with dark what-ifs of my own creation, is now bordering on an infinite loop of blackness. For me, it would seem the worst part of a four-stage disease (so far) is determining precisely where I am in it. Has the timer started? If so, how much time has already passed? What will the next test show? And would knowing any of this make it better or worse?
My healthy dad assumed he was dying for his entire 82 years, right up to the moment he discovered he was in fact actively dying, at which point he fell asleep and… died. In his 20s, my carefree brother once admitted he was afraid of finding out he was sick because he didn’t know how he’d live with the knowledge he was dying. He ultimately got 55 years, the last 25 of them spent living with AIDS until a car hit him.
Unmasked in a public space for the first time in months, I could feel how close the machine’s walls were to my face just from my own breathing, choosing to keep my eyes closed and my thumb off the escape button. “Okay, here we go. Take a deep breath and hold for the count of 20,” said a voice in my head that was not my own.