Team Sisu

I pretty much never talk about work here, for some of the obvious reasons (bad form, mate) but also some non-obvious ones, the foremost being that I have never managed to put together a cocktail party-appropriate sentence about what I do for money and to keep me off the street. I could just look at the diploma I have stashed in the trunk of my car and remind myself which set of letters I have after my name, and go with “I’m a social worker,” except that I want to make sure everyone knows that I am a wimp and don’t do hardcore social work like CPS or something, so I sometimes say “I’m a clinical social worker.” And then I watch peoples’ eyes get that sort of blank look that means they don’t actually know what you’re talking about. So I’ll try to be helpful, and say something like, “Well, I’m sort of a shrink. Except I don’t do therapy. Well, I do but it’s not regular therapy like, in an office where you sit and tell me your problems. Although I used to do that. I work in rehabilitative psychology research and what I do all day is call people on the phone and talk to them about exercise. Because they have this disease called multiple sclerosis, and also they have depression, and we think that exercise might be good for them. We don’t know, though, because no one really knows anything about multiple sclerosis.”

And that’s when peoples’ eyes get really glazed over.

Multiple sclerosis, if you don’t know, is a permanent, irreversible, degenerative, inflammatory autoimmune-related neurologic disease. What happens is that people get scars on their brain tissue, specifically the myelin sheathing, which acts as insulation for neurons. Just like a wire will not transmit electricity very well, or maybe short out altogether if it’s not properly insulated, the scarring on the myelin prevents information from being transmitted effectively. This is visible, by the way, on an MRI. It really is scar tissue, like a scab on your knee, from the body’s immune system attacking itself (maybe). The symptoms that go along with MS are alllll over the map, and they depend on which part of the brain or spinal cord is showing lesions. If you have them on a part of the brain that controls locomotion, you may have difficulty walking. If you have them on one of the speech centers, then that may be affected. Any function controlled by the brain (i.e., all of them) can be affected by MS, and there is no way to predict where the lesions will show up, so the disease is literally different for every single person who has it. Some people never experience symptoms and are running marathons and doing differential equations in their spare time, and others are in wheelchairs and struggle with stuff like talking and eating. There is no way to tell.

You may have heard of multiple sclerosis. You might know someone with MS, especially if you live in the UK or here in the Pacific Northwest. If you live in Seattle it’s possible you’ve seen one of those big billboards on Denny that say “This is what MS looks like.” You might have MS yourself. You might have it right now as you’re reading this, or I might have it right now as I’m writing this, and neither of us would know it, because there is no way to know until you start experiencing symptoms. And even if you did start experiencing symptoms, if they’re not that serious and if they come and go, it might not occur to you to go see a neurologist for an MRI to see what kind of white spots show up on your brain. Or you might not have the health insurance. Or you might think that maybe you’re just getting older, and that’s why you have a hard time remembering things, or that you’re just really tired because you have a job and two kids and there never seems to be a spare minute to sit down and get some time for yourself. You might think the numbness in your feet is because you’re not wearing supportive enough shoes, which is what my friend S first thought when he was diagnosed.

S is married to my good friend A, whom I’ve known since we were suitemates in college, ten years ago now. She and I have gone through various ups and downs during our friendship, and at a certain point, after we’d both moved to Seattle from California, we went a couple of years not speaking to each other, not because we didn’t like each other but because we just sort of lost touch. I still remember the phone message she left on my machine four years ago, telling me she knew it’d been a long time but call her back! Quick!, and how surprised and happy I was when she told me that out of nowhere, she was getting married! To someone really great! I liked S immediately when I met him and was thrilled to know that my friend was marrying someone so amazing…funny, kind, looks good in polypropylene…who was so in love with her. I had a great time at their beautiful wedding and I still listen to songs from the favor CDs they made every week. The last time I went camping was with them, and I still remember what a good time we had together, even though I’d thought I might die, or at least get a little frostbit, on that trip.

S was diagnosed, at first, with relapsing-remitting MS…a sub-type in which symptoms flare or exacerbate for a short time and then go dormant again…about two weeks after I got this job working in the MS community. I remember A mentioning that he’d been having some weird health stuff going on and that he was scheduled for an MRI, and since at the time I was reading article after article about MS all day every day for work, I immediately thought, “Oh, man. That’s what it is.” And that’s what it turned out to be.

I haven’t seen S very often since then for various reasons but A has kept me updated on how he’s doing when we see each other. I saw him at her birthday party this year and he mentioned, as he was serving me a cranberry-juice-with-sparkly-water, (which he’d remembered I like, because he’s like that), that he’d been having symptoms again. And then two weeks ago I happened to be on the phone with A when she just sort of broke down and said that S’s diagnosis has been revised, from relapsing-remitting to secondary progressive, which means that he can expect his symptoms to gradually worsen over time. MS does not affect lifespan, it isn’t fatal, so he will be living with those worsening symptoms for many years to come.

There is no cure. We don’t even know what causes MS. I work in the branch of MS research that focuses on treatment and management, and we basically have no idea what’s even helpful or not. Fifteen years ago doctors were telling MS patients not to exercise because they thought it could trigger an exacerbation, but now we think that exercise is actually good. We think we know that there’s a genetic component, and that there’s a geographical component, and that it’s extremely variable, but we know hardly anything else about it. Going to this work conference a couple of weeks ago was really weird, because all the talks were like, “We think this is something to do with MS, but hell if we know,” and that’s the state of the art right now. I work with some of the best respected experts in the field and our staff research meetings always end up with “Uh, yeah. We don’t know.”

A emailed me after we had that talk, and I wanted to share it with the internet (with her and S’s permission, of course) with the idea that some people who read this journal might be interested in contributing to the fundraising she’s doing to forward MS research. I know there are a lot of good causes out there and I certainly don’t want to tell you how to spend your money, but I’d be remiss if I didn’t mention, on my own journal, one that is so important to me both professionally and personally and ask people to consider supporting it so that maybe one day–I can only hope–I will have to look for an entirely new line of work.

Dearest, darlingest Chiara,
The past two weeks I have been numb and stunned as I choked on my daily routine. Talking to you last night, I finally got a little relief. Our friendship goes back far enough and through enough major life events that I forget that you have become an expert on [my husband’s] disease. Is it god’s sense of humor that you got the job two weeks before [my husband’s] diagnosis, like you said? Or, if there is a cognizant power in the universe, was it a way to soften the blow? Either way, I’m extra lucky: I have a dear friend who is also professionally invested in MS.

Now that [my husband] has been re-diagnosed with secondary progressive, I really do feel like my life has been stripped of original plans. I am trying to think of it as an opportunity to do something completely different with my life, rather than a giant monkey-wrench. A gorilla-wrench, if you will. Strangely, I feel a sense of relief that I won’t be going on for my PhD. I think I’ve known [his] disease was progressing this way and I’ve been afraid of the potential of a re-diagnosis. With secondary progressive as a reality now, rather than a looming nightmare, it seems more manageable emotionally, for me, anyway.

While I feel grief, [My husband] is having a hard time with re-envisioning himself as decreasingly mobile. (But like you and I were saying last night, thank goodness the trend is mobility and not cognition!) We had a conversation earlier today in which I suggested that we look into moving to Ballard because many of the houses there are low to the ground (if not on the ground, a ramp would be easy to add). He looked both tense and sad and he said “I still have some kind of denial.” I asked, “denial about your mobility?” and he said “everything.”

And “everything” is really almost true. Everything is almost how much is changing for us in our daily lives. I need to reassess my career, find a job with healthcare, earn enough money for both of us. He needs to cut back on work hours (it looks like that reduction to .8 will be going through, by the way), adjust his hobbies to meet his abilities, learn to feel whole as he loses some of the things he thought made him who he is. Also, he needs to make that choice about which drug to take and as you know, neither one is without potential dangers. I think in some ways he is more worried about me than he is about himself. But then, I worry more about him. I guess that’s what a partnership is all about.

I’m sorry you won’t be able to join in on the Team Sisu fun this summer! Planning for the MS 150 is turning out to be a great outlet for me. So therapeutic. If I could dedicate my life to raising money for MS research, I think I would!

Much love,
A.

Go, Team Sisu! Put me out of a job!