Better Dead Than Autistic Like Me
My sister almost died from complications secondary to chicken pox — months before the vaccine became available
The title of this piece is what my autistic self hears when self-declared health experts insist that vaccines cause autism — a claim based on research so flawed that the Lancet published a rare retraction in 2010. The myth has persisted, fuelled by the same entitlement, ignorance and ableism that today drives COVID deniers and people who refuse to wear masks.
In the early days of the COVID pandemic, some governments openly mused about managing the crisis with a herd-immunity strategy. But as the virus spread across the globe and more data became available, prevailing wisdom came to call for precautionary closure of schools and other community and commercial institutions.
From the unique vantage point of being autistic and remembering what happened to my sister Nora (name has been changed) when she contracted the “childhood illness” chicken pox two decades ago, I offer this counterpoint from my family’s history: No, autism is not worse than diseases for which we have effective vaccines. No, wearing a mask is not worse than the risk of contracting COVID. No, we cannot reopen schools.
“Chicken pox parties” were the twentieth century precursor to today's controversial COVID parties. At these “parties”, parents engaged their children in social gathering with the intention of exposure to chicken pox with the hope that the child would contract a mild infection, followed by lifelong immunity to the virus.
By the time I was thirteen and Nora was eleven in the spring of 1999 and neither one of us had caught chicken pox at school, my mother had concluded that perhaps we had natural immunity.
Unfortunately, this was not the case. Sometime in early March, Nora’s Grade 6 class participated in the school’s Reading Buddy program, which involved reading books one-on-one with students from a Grade 2 class. The student my sister read a children's book with that day had just recovered from the symptomatic phase of chicken pox and was sent back to school immediately so her parents could return to work. Two weeks later, Nora fell ill with chicken pox.
It was not a pleasant experience, but the disease appeared to run its typical course. “Maybe I should have taken you girls to one of those chicken pox parties,” my mother joked. In what would later prove to be the calm before the storm, Nora felt better in time for my parents to decide to go ahead with the trip to Quebec they had planned for March Break.
“You should go back immediately”
Hours after we arrived at the hotel in a small Quebec town, Nora began to feel sick again, but even worse than she had with chicken pox. So much worse that by the morning, even moving her body to get out of bed made her retch.
Nora, never one to suffer from motion sickness, now had the motion sickness from hell. She had a headache so bad that no over the counter painkillers could relieve it. Alarmed, we got into the car and found a walk-in clinic. I sat in the waiting room and read Reader’s Digest while the attending doctor told my parents to monitor Nora carefully and take her to a hospital if the headache and vomiting didn’t cease.
They didn’t. It was clear within an hour or two of returning to the hotel that we had to get Nora to the local county hospital — a small Catholic-run institution that was a throwback to my mother’s childhood in rural Quebec. My memory of it is vague, however, because immediately upon seeing how sick Nora was they insisted there was nothing they could do to help her there and that we must head to the children’s hospital in Montreal tout de suit.
The scene was repeated at the Montreal children’s hospital. Nora was prioritized in triage — she needed an IV to replenish the fluids lost to vomiting — and the doctors were ready to admit her. But, anticipating a long hospital stay, when they heard we were from Toronto they changed their recommendation.
“If the Hospital for Sick Children in Toronto is your local children’s hospital, you should get back there immediately.”
So we set out towards home, Nora in the front passenger seat to reduce her nausea, and my mother in Nora’s usual seat beside me. I listened to Alanis Morissette and Green Day on my walkman the entire drive home, gazing out the window so my mother wouldn’t see the stress and worry on my face.
Back in Toronto, Nora was admitted immediately onto the isolation floor at the Hospital for Sick Children. My mother stayed with her. It had been less than three weeks since Nora had come down with chicken pox. Hospital protocol forbade me from visiting — I had been exposed and was presumed to be incubating my own chicken pox infection — posing a risk to the other vulnerable children on Nora’s floor.
That March Break was spent in the Atrium of the HSC, flipping through a Teen People or Seventeen magazine at the cafeteria-style tables while listening to Alanis on my walkman and watching the bright yellow elevators visitors to and from patient floors. I wished I could get onto one and go to the 14th floor to visit Nora, or even talk to her on the phone — but she was always asleep (later I learned she was in a coma for ten days).
The Sunday night of March Break was my fourteenth birthday. My father ordered us Domino’s and I listened to my new Prozzak CD. Late in the evening I began to feel feverish and when I went to take a shower, noticed a few small pink spots on my chest — just like Nora had weeks earlier. I called Nora’s room at the hospital and talked to my mother.
“Yes, it sounds like you have chicken pox. Please go to bed and rest, sweetie, and call me in the morning.”
The horrible disease that made Nora do nothing but vomit and sleep was encephalitis. It was a complication in such a low percentage of chicken pox infections that nobody was worried I'd soon be joining Nora on the 14th floor. But this was the first time I was facing a bad illness without my mother nearby to nurse me, and, as is befitting for a grown-up fourteen year old, I was determined to take care of myself.
And the hospital staff had been right: I had been incubating chicken pox, and if I had visited Nora, I could have passed the virus to a vulnerable patient.
Later, when I joked that I got chicken pox for my birthday, half the joke was left unsaid — the half where my gift was just getting chicken pox, while being spared a scary hospital admission, like Nora.
After ten days in a coma and during which doctors had warned my parents that if Nora woke up, she might face serious lifelong disabilities, Nora turned a corner. She was lucid, talking, and moving without her headache worsening or vomiting. She was coming home!
Because of a vaccine that became available the following year, chicken pox as a childhood rite of passage sounds as antiquated to kids today as polio did to my generation. But in that nascent last spring of the twentieth century, our family room was transformed into a cozy Victorian-style sick-room; my sister and I each occupied a couch in our pyjamas all day, and our mother brought us soup and crackers as we watched reruns of Seinfeld and Frasier and caught the series premiere of Futurama. We were a family basking in safely being back together again.
We had triumphed over chicken pox and Nora had bravely vanquished encephalitis. To this day, nobody in our family has met or heard of another child who became so seriously ill as a result of contracting chicken pox. (Also to this day, Nora, now 33, is discovering new ways in which being an encephalitis survivor puts her at elevated health risks — being at risk of severe complications due to COVID is one of them).
Vaccines not vents
In the summer of 1999 I came across an advertisement for a chicken pox vaccine in a magazine. I couldn’t believe my eyes nor contain my excitement. Someone had made a vaccine! Other families wouldn’t have to go through such a harrowing time as we had when chicken pox made Nora so sick! Clutching the magazine, I ran to find my mother and show her the ad.
She gave me a wry smile. “I bet if a year ago I said to you, ‘why don’t we get you the chicken pox vaccine at your next doctors’ appointment’, you and Nora would have been less than thrilled.” But I don’t blame you, her tone suggested. Who would have known Nora would be one of the unlucky kids to end up in a coma from chicken pox?
No one likes getting a shot. No one likes to think they will be in the fractional percentage of patients who contracts a deadly, disabling and preventable disease. When we convince ourselves that it will “probably be OK” to skip a vaccine booster — or send our kids to school while they might be infectious with a virus — we ignore how taking care of ourselves also means taking care of our families and communities.
Prominent Republican Herman Cain died today of complications caused by COVID. It is well known that he contracted the virus at an event held in defiance of social distancing guidelines recommended by infectious disease experts such as the White House’s own Dr. Anthony Fauci.
I think of Mr. Cain’s family, waiting out the virus’ attack while he fought for his life on a ventilator in intensive care. I think of this scene replaying ad infinitum across continents and time zones; a global pandemic of heartbreak and lives shattered permanently in a matter of days or moments. I think of the families getting the devastating news that their parent, child or matriarch/patriarch will never be the same again, or is never coming home.
A challenge to COVID deniers
I think of that March Break years ago and how an innocuous-sounding disease upended our lives, leaving Nora with lifelong health challenges. I think of my parents figuring out what to say to me, putting on a brave face while facing that the best case scenario involved their eleven-year-old daughter surviving with permanent disabilities.
This is a call to action for anti-vaxxers. Now that Nora’s story has demonstrated how dangerous preventable viral infections can be, please @ me on Twitter or reply here telling me that you’d prefer that your child, your neighbour’s child, or your child’s classmate, endure what Nora did or be dead rather than be neurodiverse like me.
While the world waits for a COVID vaccine, tell me publicly that your absence at a non-essential business, missing your beach vacation, or postponing your brunch is more important than sparing a child a ten-day coma, disability or death.