Probability is a funny thing. We who are not statisticians tend to create perceptions of risk based on our own personal experiences, which is understandable and just as obviously out of whack with reality (‘I’ve never had a car accident, so the likelihood of my having one is low’). Many people drive their cars through frighteningly heavy traffic every day, yet find the risk of bear attack so intimidating that they hike in abject fear during their once-a-year visit to a national park.
I carried a ‘major injury’ health policy during the Montana winters, supposing that the risk of breaking my leg while trying to ski was a moderate to high probability. I was completely oblivious to the probability of contracting a rare disease. Low and behold, I didn’t break my leg (a fact which is probably explained by my flexibility, not my downhill skill), but I did end up with multiple sclerosis.
The odds of being diagnosed are relatively modest, 1 in 1000 by most estimates. I was much more likely to be in a car wreck or contract any number of common cancers. I guess that makes me pretty lucky. In this particular case, my luck was bad, but lucky nonetheless.
I’ve spent the last month carrying my medical records around St. John's in my pack and communicating with people on both sides of the border (neurochem corporations, schools, insurance companies, nurses, doctors, and bureaucrats of all stripe), endlessly explaining my unique case. I’m a non-Canadian temporarily residing in Canada for school. No job, no family, not planning to stay.
I further explain to these folks that I, like everyone here in the Dominion of Canada, have free access to a doctor, hospitalization and surgery. Then comes the tedious discussion of (my) MS: a medical condition which costs thousands of dollars a year but requires no hospitalization or surgery. Being a non-citizen makes me ineligible for the federal and provincial programs which cover medication.
I don't need a doc but I have one; I need medication but I can't get it. By the time I get done explaining this circuitous situation, the other end of the line was often silent for a moment. More than once I’ve had people sputter on for a bit before finally offering to call me back after they’ve consulted with a supervisor.
“This is, well . . . somewhat . . . unusual . . .”
I guess it’s the price I pay to be so lucky. The poor souls in customer assistance who deal with the masses day in and day out were just unprepared for lucky bastards like me.
While I do consider my luck contracting MS to be bad, I have to admit that my luck in terms of condition and progression is pretty good. It’s my theorem that this is what’s confusing people in the medical establishment so much: if I were lying in a hospital, or in a wheelchair, requiring thousands of dollars in care, everyone would understand. If I were a healthy, active person who runs and pumps weights and hikes and bikes, who needs to go to a GP once in a while and get a ‘script for a headache or sinus infection, that would make sense.
The source of confusion for everyone is that I’m a healthy person doing all those healthy things, yet I’m also sick and cost lots of money. So, like I said, I’m pretty lucky: some of it is good, some bad.
Today, I got the word that Teva Neuroscience Inc. approved my request for financial assistance. They will subsidize some of the $10,000+ cost of my medication, putting it within reach of my student insurance. So I can now complete the great circle of modern western medicine: go see a doctor AND afford the meds.
For the last month, I have lost a good bit of sleep and operated every day under the looming possibility that, after all I’ve done to get here, I would have to leave Canada; my post-bacc adventure was over before it even started. Now, even a cynical statistician would say that the probability of that outcome is pretty low.
And the sun in shining in March in St. John's! It seems like my luck is holding.
Room to Read
3 months ago