(Scroll to to bottom for a clip from the great Nina Simon, today's featured artist in honor of Black History Month.)
Since I have the world’s lightest case of Multiple Sclerosis, it took me a while to figure out what the incredible fatigue that hit Wednesday morning reminded me of—not the flu, because there was no achiness, no pain with movement—just the fatigue. It was sort of like one of the blizzards in Laura Ingalls Wilder’s The Hard Winter: clear sky and then whump, whirling snow, screaming winds, but that analogy was not going to help me identify what was going on now.
One minute you’re doing your morning exercises, and the next you get up to find one of your thighs going brrrrrr-r-r-r-r-r, not just shaking but actually quivering, and as the morning continues through the breakfast that you eat and the tea that you drink because it seems smartest to do what you usually do, and you finally make the phone-calls to husband and doctor, the fatigue mounts from legs through the body until you’re drowning in it, there’s nothing left to do but lie down and surrender.
By this time, though, it’s come back to me: the evening a month or two after our arrival in Japan in the summer of 1997, when after exercises in our miniature living-room and dinner with the kids, husband Steve and I took a walk down the hill towards the river that flooded each spring to spectacular hooting warning horns, and as we turned back up the hill towards the bare, blank university apartment building where we lived, I said, “It’s weird—I feel weak.”
“Maybe you’re tired from exercising."
“I don’t feel tired,” I said. “I feel weak.”
It turned out to be a crucial distinction.
Next morning I got up, got dressed, even did my morning yoga I think, and while sitting at the table having breakfast with the family, realized that my right side had gone numb. I couldn’t move my foot. I leaned over and whispered to Steve, “Get the kids off to school, could you? I’m paralyzed.”
He barely nodded, but slid effortlessly into the prescribed role, making sure kids had books, jackets, and lunches, standing by the genkan (entrance-way) of the apartment as shoes were donned. Me, I waved from my seat: “Have a good day, kids. See you this afternoon.” And the kids, eight and fourteen years old, went off none the wiser. After all, sometimes it was me, sometimes him, seeing them off, so this was not new or different.
The attack was misdiagnosed as a freak spinal-cord injury, though since then I’ve learned just how freak it would have had to be: every peripheral nerve emerging from the spine on one side only, from the ribs down, gets injured, but none on the other side? Not likely. Misdiagnosis, however, is more common than not with MS.
My Favorite Back Surgeon
The whole thing wore off gradually, which is also normal. Six months later I was walking the mile and a half to work, and there were virtually no long-term effects, save an odd occasional numbness at the waist on the right after a hard workout and hot shower. Many years later, when I mentioned this to my neurologist, I expected her to look at me and say, “Sure.” Instead she nodded and said, “Heat exacerbates MS symptoms.”
That was in the fall of 2005. I’d hurt my back for the second time, and had limped into the office of Bozeman’s amazing nine-fingered back-surgeon (I believe he lost the finger roping, not slicing or dicing), who is absolutely my favorite surgeon, being the only one I’ve visited who’s never had a piece of me. The first time I’d seen him, almost two years previously, we’d scheduled surgery for my slipped disk, but I got so much better over the two intervening months that the Friday before the surgery I called him and said a whole bunch of people were counseling me to cancel, and I didn’t know what to do.
“Well,” he said, “if you’re there Tuesday morning, we’ll go ahead, and if you’re not, we won’t.”
I was flabbergasted. “You don’t have to know ahead of time?”
“No. I once went up to greet a patient—I was scrubbed for the surgery, he was all prepped—and when I said ‘Hi, Ben, how’re you doing?’ he said, ‘Great, Doc.’ So I looked at him and asked what was going on—and when he said he wasn’t having any pain, I sent him home.”
That, folks, is my kind of surgeon. Let’s hear it for Doctor Speth.
I wasn’t there for back surgery on that Tuesday morning of 2004, but in September of 2005, when I crept into his office on my husband’s arm and he said that I now had a completely herniated disk and that this time I’d need surgery for sure, Steve and I just nodded in synch. No question.
That was before his intern tapped me all over and then called him in, and he tapped my right leg, which practically kicked him in the unmentionables, and he turned to her and said, “Is that what you wanted me to see?” She nodded.
The family practitioner I’d gone to after first injuring my back a week earlier—and I don’t know how the injury happened, which is apparently common—had thought I was exaggerating that leg reflex, but I wasn’t. It turned out that reflexes all over my body, elbows, ankles, wrists, whatever, were hyperactive.
So, said Dr. Speth, the back needed reconstruction, but not until after we’d followed up the business with the reflexes. It could be constriction of the spine high in the neck, it could be brain cancer, it could be MS. Go see a neurologist, forthwith.
“And in the meantime, try physical therapy for your back. It worked before, maybe it will work again.”
Believe me, there’s nothing quite like going to see a specialist, more or less ready to hear that you’ve got to have back surgery, and hear instead that you may have brain cancer. On the other hand, when is an MS diagnosis a good thing? When the alternative is brain cancer. After the lumbar puncture and the three-hour brain, cervical, and thoracic spine MRI, and all the other tests to rule out lupus and lyme disease and things I’d never heard of, I remarked to Steve that at least it wasn’t brain cancer. Though maybe that could have been removed, I added.
“Not where your lesions are,” my neurologist said. And there you have it. Lucky again.
Unexpected Advantages to Teaching from a Wheelchair
Throughout the autumn of diagnosis, my back gradually improved. I’d insisted on renting a wheel-chair at once, which meant that I could pretty much get around, and could teach with at least minimal dignity. Want to get the full and rapt attention of a roomful of first year university students? Enter in a wheelchair. Want to hear them hoot with glee and accuse you of false pretenses? Stand up a week later to use the blackboard. That was a pretty funny moment.
Years later my PT told me even he thought I’d need surgery. But he persevered, and so did I, and I got better. That was one of the things that got me through all the uncertainty of the long diagnostic process—the whole time, my back was improving. By Christmas, I was just about back to normal. So I’ve nearly had back surgery—twice.
How the Disease Works
The point of all this is that I started on MS injections, and after having to switch medications once, have gaily injected myself every day since, with virtually no further symptoms and no incidents or, as they’re known in the MS community, “episodes.”
An episode, or flare-up, or relapse, occurs (or so it’s believed) when new lesions are formed in the brain or spinal column—the lesions being points where the body’s over-vigilant immune system attacks the myelin that sheathes nerve fibers, reducing the nerves’ ability to communicate with their neighbors. There are actually four different forms of MS, but in the most common one, “relapsing/remitting MS,” these flare-ups usually die down gradually, and symptoms can completely disappear for two years or more, until the next round.
What makes the disease so insanely difficult to diagnose is that the flare-ups cause such a wide variety of symptoms that many patients get labeled neurotic or worse. One relapse can leave a patient blind in one eye, the next can cause numbness in one hand, the next paralysis in a foot—there’s no rhyme or reason to it, no pattern.
So again, I was very lucky to have been misdiagnosed exactly once, and then to have someone recognize the leapety-leap of my right leg when tapped as indicating a serious condition.
As for the eleven and a half years between my first episode and this second—incredible.
You gotta love that I.V tube
The treatment for an episode is high-dose steroids, first intravenously, then orally, to calm down the inflammation in the central nervous system. Often this can avert the dreaded physical disability—the numbness, the blindness, the roaring in the ears—completely. So I’ve spent hours over the last three days in the ER of our little local hospital, waiting to be hooked up, and then being hooked up, to an I.V. machine so that this stuff that also causes insomnia, “false energy,” taste distortion, mood swings, and oh yes, hairiness, can be pumped into my veins and stop, we hope, my body from destroying my brain.
So far I haven’t sprouted a moustache or taken a swing at anyone I care about, and I haven’t gone numb or blind or half-deaf. Excellent. I got the I.V. out today (also excellent), start oral meds tomorrow, and will have some idea how I’m doing in a couple more weeks.
Anyway, that’s what happened to me this week. I’ve spent unprecedented hours on the couch in a limp pile, and even the ER in a small place like Bozeman, where you know the folks and they know you after a day—“Hey, Michelle, don’t they ever let you go home?” “Hi, Kate, come on back here and we’ll get you set up.”—well, it’s not like home.
I thought I'd give a shout-out today for one of my favorite singers ever, Nina Simone, (1933 – 2003) who's suddenly been popping up in movie soundtracks here and there, and who I swear was sampled in a Jay-Z song a few years ago. She deserves a much bigger write-up than I can give her now, but here's the woman herself, in a brief but inspired bit at the end of Screamin' Jay Hawkins' "I Put a Spell on You." This is the 1968 take.
For the whole thing, go here for the original '68 version, and here for a much updated live one from '92, and you actually get to see her at the piano, and in a bit of obscure give and take with the audience.
It's hard to find good YouTube clips; there are no live renditions of some of my favorites, and it's great to see the woman in action. Check out her incomparable "I Want a Little Sugar in My Bowl," a fine, fine reworking of Bessie Smith's classic by almost the same name, except where Simone had "want," Smith had "need." There's no live video of this, which is howling shame, so I've linked to one that has a recently choreographed dance, by Maggie Boogaart of Amsterdam. It's fun, though not nearly as steamy as the song, unfortunately. (Nothing that steamy could possibly be shown here in the States, but heck, in Amsterdam?)
I first heard of Simone from a high school student at the school where I had my second teaching job. He got me hooked, I roped in not-yet-husband-Steve, and now both our kids listen to her. Steve and I actually got to see her in concert, in San Francisco, I think it was. The conversion song for most of the family was "Baltimore," for which again, I can't find a live performance video. My student friend got to call out the words of this to her once, when she forgot them onstage. He was high for weeks. Here it is:
Kate – I’m sending you all good thoughts and hugs your way to help you on your way into remission.
Hubby went swimming training yesterday as usual, but this time Stephanie was there. So he came back after a super excellent workout as Stephanie’s rather a good swimmer. She’s got MS (was blind at one point, but has recovered) and competed at the paralympics last year.
Sending you our best thoughts and energies from the Shibaguyz and the Shibakidz… keep us posted, please.
Thanks for sharing your story. I never really understood what MS was, and felt to nosey to ask. I missed you while you were gone from blog world, hope you get feeling better.
So far I haven’t sprouted a moustache or taken a swing at anyone I care about, and I haven’t gone numb or blind or half-deaf. Excellent.
So . . . how many people have you taken swings at that you don’t care about?
But seriously. This is the best explanation I’ve seen yet for what MS is and does. Not that being able to write the explanation makes up for having the disease, obviously.
I’ll be thinking about you. I hope you get better soon.
Kate, I’m sending good thoughts and positive energy your way. May you experience all the benefits and none of the unwanted side effects of treatment.
Love and hugs and huge hopes that this will flare down as quickly as it flared up.
I think that if you do grow a moustache it should be one like this (http://onemansblog.com/wp-content/uploads/2007/08/Salvador_Dali_Flower_Moustache.jpg) – not only elegant but just a little bit horticultural.
Hope it all gets back to normal very soon.
Do yourself the biggest favor of your life and schedule an appointment with a Lyme literate doctor. The Elisa & western Blot Lyme tests are just not accurate for a person who’s had the disease for over a month or so because they are measuring your immune responses to the spirochetes and you no longer have one.
Your medical background is so similar to my own I would bet that you have Lyme Disease. To find Lyme MD call your state or local Lyme Disease Association. Go here & watch the clip:
“Under Our Skin” http://www.youtube.com/watch?v=sxWgS0XLVqw
Be sure to have your testing done at a lab like Igenex. Google everything you can abour Lyme induced MS.
FYI, I was tested and treated at the University of Michigan and they insisted I didn’t have Lyme….now I know they were so wrong.
Hope This Helps.
Sounds like a nasty few days. Hope this is the last bout for another 11 years at least!
My mum had the primary-progressive version of MS and it was horrible, but predictable in its horror. Yours sounds less hideous, but almost as bad in they way it attacks at random.
Hope the fatigue has passed now and that you’re feeling better. I’m assuming that the fact that you’re blogging is a very good sign!!
VP, thanks for the good wishes. Is Stephanie your daughter? It sounds as though she got hit much earlier in life than I did. (Another way I was lucky.) I’m so sorry she (and you!) have to deal with this, though it sounds as though she’s doing pretty well.
Thanks, Shibaguyz–and –kidz. Good to hear from you.
I went rather overboard with this one, I thought (it’s never happened before and never will again), but I’m glad it clarified some things for you, Lee.
Mr. S.–Maybe it’s a misplaced effort at control? Oh well. As for the swings at the unloved–I was wondering if someone would pick up on that. So far none have sued.
Daphne, Cindy, Victoria–thanks all. I shall hang out my dream nets to capture all those good thoughts headed my way.
Working on it, James. I’ll send you an update. Or maybe I could braid it into my emerging chest-hair.
Karen–I watched the scarey video, but don’t see why Lyme-induced MS is any more likely than the plain old-fashioned version in my case. I never had the initial fever and rash that often go with Lyme, and I don’t get that awful all-over pain. I will ask my doctor what Lyme tests were run, though. Thanks for the input.
Amanda–That sounds incredibly hard. Primary-progressive is much nastier than relapsing-recurring. (Aren’t these double-barrelled names just too cool?) Most of these ten-plus years, MS had no impact on my life whatsoever. I am definitely one of the lucky ones.
Oh geez, I’m sorry to hear about all this. I hope you are up and running about soon.
Many hugs to you.
So sorry to hear you’re crocked, Kate. The story of your diagnosis was fascinating; I know nothing about MS, and this has taught me a lot. I do hope you can shake it off soon.
I too appreciated this detailed, and light, approach to this condition. My masters thesis director had a severe case, and died only a few years after I graduated.
Thanks, Susan; hugs are good.
Well, Soilman, I didn’t know anything about it either. I’m just glad that surgeon did!
So far I’ve been lucky, Benjamin. I know a man here in town, one of the world’s mastercraftsmen of fly-rods, who can’t sit up straight, but still works with his equally amazing wife to make superb rods. She also makes extraordinarily beautiful hand-crafted books. What a team.
Awesome! I love this post
Thanks, Shazia. If we knew each other better, I’d probably make a snide remark about your taste in posts, but since we don’t, I’ll refrain.
Your post gives me a delightful encouragement, i appreciate this post of yours.