My father and his Swiss cheese brain
Family curses, nerves, and necessary warnings
In a few lines of dialogue in a neurologist’s office in Beverly Hills, the improbable had become the probable, the norm: things which happened only to other people could in fact happen to me. I could be struck by lightning, could dare to eat a peach and be poisoned by the cyanide in the stone (Joan Didion, The White Album)
My father has always been an example to be avoided. He wasn't a bad person — he was selfish and immature and overly sensitive but he was also brilliant, rebellious, the kind of person who would sneak into abandoned army bases and steal old military comms equipment to take apart and examine.
Old friends and acquaintances think I look like a carbon copy of him. If you take a photo and run it through the "female" filter on FaceApp, you'll probably get something that looks convincingly like me. I am stubborn and contrarian and too much like him in too many ways.
His illness was the elephant in the room, unspoken but permeating every part of my childhood. Pre-illness John was a creature of fantasy I could only approach through stories other people told about him and journals I dug out from the depressive hoarder rubble of his house, trying to understand a little of what he felt and how he thought. I learned more about my dad after he died than when he was alive: I learned that he never talked about anything that mattered, that when a new symptom appeared my mother had to coax it out of him; I learned that every piece of machinery he owned was only half-screwed shut, always ready to be worked on and tinkered with; that he was self-sufficient, stupid, wanted to do everything on his own.
I'm in my third year of university and our cognitive neuroscience lecturer passes around a 3D-printed blob of jiggly pale pink plastic modelled after his own brain. The black-and-white MRI image coming out of the projector looks almost atrophied, I think, nothing like the plump-juicy brains of my neuroscience textbooks. Is that what my dad's brain looked like? I know brain volume decreases with age, so maybe that's what the brain looks like when it ages? Questioning the plumpness of someone's brain must be some kind of a faux-pas, so I don't.
I like to think of my dad's brain like a hunk of Swiss cheese, even though multiple sclerosis doesn't look like Swiss cheese and neither does brain atrophy. The Swiss cheese appearance usually refers to enlarged Virchow-Robin spaces where multiple sclerosis causes little white matter scars called sclerae. Active lesions show up as bright spots on a scan — there's a lot going on there, a microscopic battlefield where T-cells and macrophages descend to attack the conductive myelin sheath surrounding neurons. Old lesions look dark, tiny black holes of scorched earth.
Having multiple sclerosis greatly increases the risk that your child will get it too, though most people didn't know that in the 90s. Expectant mothers now gather around certain forums talking about the experience of being pregnant with MS. They think it's great, they love it — you get nine months where your body orders a temporary ceasefire, making a new MS relapse during pregnancy unlikely.
Our emotional state skews our intuitive sense of probability. If you're happily partnered and want biological kids then a 5% chance is irrelevant, something that happens to other people, not you. Someone in the forum reminds them of the risk they're taking, calls them selfish, and the group tears the dissenter apart. I wonder if any of their kids will develop MS when they grow up. I wonder if they will resent them for it.
On a stressful night in a stressful year it all catches up with me.
It's very hot and very humid and I am working on a presentation for a job interview when what feels like a shock of electricity runs through my shoulder down my arm, leaves my fingers numb and shaking. I cancel the interview and spend the next few days alternating between apathy and crying fits when my hand can't be commanded to write without shaking. Multiple sclerosis isn't directly heritable, but I have never been very lucky.
I did everything you're supposed to do. I went in for a couple of MRIs and someone stuck needles in my arms and legs to see if my peripheral nerves work, and everything seemed fine. I decided that unless I experienced another episode I wouldn't tolerate another neurologist who stared me down challengingly like yet another hypochondriac trying to waste their time, and I forgot about it until the following summer.
The nervous system relies on electrical signals and, much like electronics, demyelinated nerves don't do well with the heat. It is hypothesised that heat interferes with nerve conduction, which is why pre-MRI diagnosis consisted of putting people in a hot bath and seeing if their symptoms get worse. Think of the demyelinated nerve like an exposed wire — the heat won't cause new damage, just aggravate what's already there.
It's been three years and a pandemic since that night and every summer, on hot days, I feel its aftereffects. Shocks of pain like pinpricks or invisible papercuts at the tips of my fingers and toes, sometimes pain deep in the bone or a strange, fuzzy numbness in the limbs. It could be worse, I think.
Isolated neurological episodes are sometimes just that — isolated. I take a lot of cold showers and try to manage my stress and hope it stays that way. I feel lucky. I know that illness can be a lesson or an opportunity for growth but I chose, instead, to take this as a warning.
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