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slow death

dom and i are lucky people. that may seem odd given the title of this post and it may seem odd if you know a bit about us, but nonetheless, it's true.

a couple of years ago, dom started having incredibly painful and inexplicable attacks in his right leg. we were convinced it was sciatica, or at least some type of nerve pain, probably the result of an important nerve being compressed between vertebrae. the attacks came and went, some lasting for hours, some lasting a few minutes. they came without warning, at any time of day or night. sometimes they were bad enough that he'd have to go to the emergency room. those visits generally lasted between six and ten hours each and all produced the same result: it was probably a nerve problem, he should get an mri to make sure, but in the meantime, there wasn't much to do except try to relax and put hot and/ or cold packs on his lower back in the hopes that the problem would just sort itself out.

time went on and the attacks did not sort themselves out. even more worrying, his affected leg started dragging. we thought it might be some kind of muscle weakness because he had been trying to rest a lot and maybe in the process, his musculature had become compromised. but the muscles didn't look any different. they just weren't working anymore.

he got the mri scan on his lower body, which told us [and his doctors] nearly nothing: he did have two slightly herniated discs in his lower back, but that's actually pretty common. [apparently most people over thirty exhibit some kind of degeneration in their vertebral discs.] more significantly, there was absolutely no sign that any of his nerves were being impinged. there was no sign of anything that could explain what he'd been going through.

on our final trip to the emergency ward, it so happened that the head of neurology at the jewish general hospital was conducting and on site lesson with several of his students. one of them got assigned to look at dom and he brought his teacher over for a consult. the class assembled, asked him questions, took notes and got him to walk up and down the short hallway again and again, observing his gait and the leg that just couldn't move as smoothly as the rest of him. the problem, they determined, wasn't anything to do with his sciatic nerve or with the discs in his lower back. the problem was higher up.

dom went for a second mri and, indeed a third, on his thoracic and cervical vertebrae and his head. at one of those visits, he was telling the lab tech about everything he'd gone through in the previous months and how there still wasn't any real clue as to what was causing all of these problems- problems that were getting worse as the search continued. the tech asked: "are you sure it isn't m.s.?"

you can probably guess where this is headed.

late last year, more than a year since dom's first attack, he was officially diagnosed with multiple sclerosis. it's a diagnosis of elimination, which means that even if you have all the signs, doctors need to rule out all the other things it could be before they can tell you for sure that you have it. during that time, they can't treat you for anything. if you're lucky, you can get a prescription for something to dull the pain, but chances are it won't work very well, because analgesics and anti-inflammatories aren't particularly effective on nerve pain. but finally, we knew what was happening and we had a team of medical professionals who were there to help.

the first type of medication that dom got to try was in the form of preloaded syringes, one per day injected into the stomach, inner thighs, underarms or basically any place where you have a little bit of fatty tissue. if you miss the fatty tissue, the injections are incredibly painful and sometimes the injection site will become incredibly hard and sore for days. you need to switch the place where you do your injection every time, so you start to behave like a heroin addict, constantly looking for a spot that's not damaged by an earlier needle.

after six or seven months, it became apparent that the injections weren't working. at the very least, things weren't improving, but the truth is that they seemed to be getting worse. a decision was made to switch him to a different sort of treatment, a much stronger one, administered by perfusion. that means that once a month, he gets to go to a clinic and get an intravenous injection that takes about an hour and a half. it's very similar to chemotherapy, although fortunately, it doesn't have the same side effects. it does, however, leave him feeling sick and achy for a few days afterward most of the time. also, since multiple sclerosis is an autoimmune disorder, the medication acts by impeding the function of the immune system. that stops your immune system from attacking the parts of your body you actually need, but it also stops it from doing the things that immune systems are supposed to do, like fighting off infections. for several days after a treatment, he's extremely vulnerable to just about anything. that's important not just because being sick on top of having multiple sclerosis is pretty damned unpleasant, but for other reasons i'll get to shortly.

the perfusion treatment that dom gets now takes around four months to show even slight improvements and seven before you start anything like real progress. six treatments in, there have been a couple of moments where he could move easily- literally ten minute windows where the condition seemed to have disappeared like an unpleasant dream. he's also taking pills daily that specifically target his ability to walk and move his legs. every few months, he does a little walk across our apartment and times himself to check for improvement. he's shaved about a second off his time which, apparently, is good news. it's a little difficult to hear that, though, because the fact is that dom can't even walk from one room to another without significant difficulty. some days, he can't do it at all.

patients with multiple sclerosis are also given various sorts of therapy: physio, kino, occupational and psychological. this is crucial and, i might add, the only time i saw a marked improvement was when dom was regularly attending physio and kinotherapy. unfortunately, the waiting list for those to start is about eight months. you can, of course, go to a private clinic, but you'll pay out of pocket for those services and you won't get the advantage of having your whole team under one roof, able to compare notes and meet with you to go over your progress. until they can fit you in, you just have to wait. m.s. is all about waiting.

earlier this year, i decided for various reasons to strike out on my own and start my own business. for the time being i'm working from home. i feel like that decision has helped me a great deal and that it's something i'll benefit from even more in the future, but the fact is that i probably couldn't work outside the home even if i wanted. there are a lot of days when dom is weak or pained enough that he can't even get up to get himself a glass of water. forget about making himself a meal, or doing any kind of work around the house. reaching over to pick up a phone adjacent to where he's sitting involves a herculean effort. when he can walk around, his balance is questionable and he often can't lift his leg over things like the edge of a rug that can cause you to trip. he's taken spills at various times, although thankfully he hasn't been injured. hopefully, this will improve a great deal as the perfusions take effect, but until then, someone needs to be here to make sure that things are ok.

about a month after his diagnosis, dom took a leave of absence from work and hasn't been able to return since. even as the treatments [hopefully] start to show an effect, it's highly likely that he'll never be able to handle a full-time forty-hour a week job again, because his body just won't be able to provide the necessary stamina and energy. you can't cure multiple sclerosis and you can't reverse the damage it causes. you can stop it from progressing and you can allow your body to work around it. there's also the question of treatments. the perfusions could continue for the rest of his life, meaning there would be a few days of each month where he'd either be getting the treatment or recovering from it.

and then there's the issue of safety. after all, someone working in an office is bound to come in contact with other people's germs. have you seen what happens when someone comes to work with a cold? it's pretty much a lock that half the people there will get it, and the others will carry the germs home with them, infecting friends and family. those are people with healthy immune systems. for someone whose immune system is suppressed for several days a month, being around sick people is dangerous. someone with a suppressed immune system will contract more infections and their symptoms will be worse and last longer. and even assuming you could find a job that would allow you to go to therapy two or three times a week, every bought with illness is a serious setback. dom contracted a throat infection this fall, more than likely something i tracked home with me but was able to fend off. it required antibiotics and laid him flat for a week, but it also meant that he couldn't go to any therapy. even if he had been able to get there, the centre couldn't have allowed him to come in, because they have people coming in and out all the time with immune problems and they can't risk having one person spread a contagion like typhoid mary. the timing was lucky, in that he wasn't taking antibiotics when he was scheduled for a monthly perfusion, because then that would have had to be rescheduled.

this is, of course, another reason why it's better that i don't work in an office. i'm a pretty hearty individual, generally speaking, but that doesn't stop me from bringing home unwanted gifts and making him sick. at a recent family gathering, the two of us basically had to huddle in a corner, warning everyone with the sniffles to keep their holiday cheer at a safe distance. they were very amenable, but it didn't work. dom still developed a cold afterward. one of my closest friends has had a terrible flu for a couple of weeks now. i'd love to be able to visit and cheer him up, but i don't dare.

because he is unable to work long-term, dom is eligible for financial aid. this is independent of my earnings, since the idea is that people deserve something to keep them from being entirely dependent on another person. [it's actually not as clear-cut as that, but there's no need to get into that here.] the paperwork for that was submitted eight or nine months ago and is still under review by the government. it took more than four months to even get a letter of acknowledgement that they'd received the paperwork, which is crucial because until you get that acknowledgement, you don't have a case number. without a case number, you can't even call them to find out the status of your application, because the people you talk to wouldn't have any way of checking. we assumed that something was wrong but we've been advised that this delay is completely normal. his medical consultants assure us that these applications normally take at least eight months to generate a response and the response may well be "we need you to get us more information that will take months longer to process".

but to bring these things back to where i started, i do consider us to be lucky people. i don't mean in the typically seasonal "we have the love of our family and each other" we do have that and it's an incredible cushion waiting to catch us when we stumble. but i have a pragmatic mind and there are a lot of more practical ways in which i still say: we are lucky.

first of all, we are lucky to have the love of our families, but more than that, we are lucky to have them to help us out. they've been able to lend financial support if needed. dom's parents have done grocery runs for heavy items i'd struggle to carry by myself. they picked up a stationary bicycle from a kijiji seller in the suburbs, so that dom has some method of getting a little exercise when he can't get to therapy, one that doesn't put him at any great risk. we have a circle of really good, caring friends who've made it their business to make sure we're ok both physically and mentally. those things matter, not just in the emotional sense, but in the practical sense and i'm fully aware that it's something that others don't have. i know lots of people who aren't close to their families either physically or emotionally and who don't have the kind of network that we do.

second, we're lucky that i am who i am. that's not meant to be egotistical, because it's not about whether or not i'm a great person. the fact is that we're lucky that my specific set of skills and employment experiences lends itself easily to working from home. if i were a lab tech, or a construction worker, or a surgeon for that matter, we'd have problems. i'd have to choose between leaving work entirely, working part-time or hiring someone at our expense to be here for at least some of the time that i wouldn't. many people who go through this don't have a significant other to help out and i honestly lose sleep worrying about them. how do they wash their clothes? how do they eat? for that matter, how do they get groceries into their homes? canada has some pretty remote areas and not all of them have grocery stores that deliver. seeing what m.s. can do to a man in the prime of life, i struggle to imagine how it would affect someone who was older, or weaker, or, god forbid, suffering from another ailment at the same time.

third, we're lucky to live in a place with decent public health care. all of the medications that dom has been given are experimental to some degree, which means that you need special dispensation for the public health plan to cover them. mercifully, that dispensation is a lot faster to get than financial aid. even if the medication isn't fully covered, the provincial health plan caps individual drug expenditures at just under a hundred dollars a month. [ironically, if you have workplace health insurance, you can end up paying more, since there is no cap if you are covered by a private insurer.]

fourth, we're lucky to be living when and where we are in the world, because within both of our lifetimes, treatment of multiple sclerosis has advanced by leaps and bounds. it's no accident that dom's treatments are so new they're not covered yet- when i was a kid, a friend of mine's mother had m.s. and basically had to live with it as best she could. as it happens, canada has the highest rate of multiple sclerosis of anywhere in the world [a combination of geography and genetics that's really quite fascinating], which means that there is a great deal of research being done here and a large number of doctors with experience treating the condition. it sounds a bit crass, but you couldn't pick a better place to develop m.s.

fifth, we're in a position to wait. we have adequate resources to wait out the government and their interminable review process for financial aid. we were lucky not to be dependent on dom's income when he was forced to leave work. the fact that i'm here to take care of practical things means that we were able to get through the waiting period for therapy. and that makes us very lucky indeed.

it's fine to say that the government has a long turnaround time for financial aid, but it's worth considering what that means for people who aren't as lucky as we. eight to ten months is more than enough time for a person to be evicted from an apartment or house if they had no income, which means that someone could end up homeless before a decision was rendered on their case. since receiving aid is dependent on having a permanent address, being evicted would mean that they wouldn't be able to collect their benefits anyway. wait times in the months for therapy needed just to help patients move likewise greases the wheels to oblivion. the basic elements that most people would need to be able to take care of themselves and live independently are effectively denied, possibly until the person's condition has progressed to the point where their independence is compromised for good. these long delays aren't just a matter of inconvenience: for the poorest, loneliest and most vulnerable, they can be tantamount to a death sentence and the fact that the government is aware of this means that they are saving money by simply waiting for the problem to fall off the books. think of that the next time you hear a politician brag about the budget-trimming they've been able to do.

so now, i guess you see where the title of this post comes from. it's ultimately not about me, or about dom. i'm not crying poor. i'm not complaining that the world has abandoned us, because clearly it hasn't. i'm not letting myself be run down by the hand we've been dealt and neither is he. this whole story about our experience is a way of pointing out how much worse it could have been; how much worse it is for others who don't have our advantages. and that's why i say without irony: we are very, very lucky.


Subway Dreaming said…
Thanks for sharing this. I really respect and admire your attitude towards these challenges. Wishing you nothing but the best in 2015.
morelikespace said…
Thanks very much for the kind thoughts, SD. Happy New Year and all the best to you as well!

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