Multiple sclerosis is a thief, an autoimmune disease that breaks into the brain and spinal cord, stealing the life those of us who have—so far—escaped such chronic health inroads consider “normal”. No one writes about it more eloquently than Denise Brownlie. She blogs for MS Village, which graciously allowed Catching Courage to republish this post.
We do have Hope, all of us living with MS. We hope that there will be fewer really bad days; we hope that pleasures and rewards will keep us going; we hope that break-through MS research could be close at hand. And we do have Patience (caps intended!), in spades. For me, I reach deep for patience to hang on through the hours of pain every morning, until the opioids kick in well enough to allow me to move about, even to think. It’s taking extra patience at the moment to wait for an appointment next month with my neurologist, when I hope to persuade him to agree that it’s worth a try for me to begin taking the neuro-steroid “allopregnanolone”, the new shining-star in MS research. When I discovered that I could actually order the steroid on-line, it was tempting to set aside caution and go ahead without anyone’s knowledge. But I would feel foolish if the result was a trip to Emergency, or worse.
Living without end dates
So—what is it that we DON’T have? End-dates. A time when our MS will be gone. My step-daughter Patricia, now underway with radiation and chemotherapy to treat a difficult cancer, worded it beautifully. “I’m sure the treatments won’t be easy, but I do have definitive timelines, so that means I can see ends in sight—the one thing you don’t have, I know.”
Bulls-eye, Pat. We hope and pray that in less than two years, your cancer will be cured, and an active and healthy life will go on for a very long time. But there is no end in sight, with MS. It is one of those conditions where the ground-rule seems to be that we must live in the moment, if we want to survive emotionally. I realize that I have pushed all thoughts about the end of pain and a dozen other MS problems out of my mind, because to focus on the MS life-sentence would take all of the oxygen out of the room, every day. Of course, we can’t claim any “exceptionalism”, those of us with lives in disarray because of MS. There are many illnesses and conditions that also carry a life-sentence, and often, I realize that I am fortunate not to be as ill or as handicapped as are many of those people who have different battles.
Bird life outside the window
I mean—here I am in an adjustable bed with my MacBook laptop, and Thomas my big grey cat curled up close. The willow tree outside my window is alive with a big flock of American Goldfinch, who with the chickadees and House Finches will spend the winter at feeders almost as close to me as Thomas. With luck, an unusual bird such as a Hoary Redpoll may again fly in, but I have come to realize that every bird is special to me. Without fail, minutes spent closely watching an individual reveal details that are surprising, often delightful. The House Sparrows that pop their little heads out of the cedar hedge and scan for danger before hopping down to pick up seeds; the Mallards and the California Quail with their amusing behaviours; and yes, the clever European Starlings whose iridescent colours glow in the sunlight. I can’t imagine harassing any one of them, although sadly, once in a while others in the neighbourhood do not share my love for everything with wings, and only my disability deters me from making an issue out of it. Still, if you are going to chase ducks, watch out for this upset woman on a medical scooter!
Many of my friends, I know, are off on a Thursday birding adventure this sunny day. But I was lucky enough to participate in and even be a sometime leader for about twenty years of Thursday birding; owling expeditions; Breeding Bird Surveys; Christmas Bird Counts, and the memories of always having a grab-and-go pack at the door, ready to join a car-load of other “twitchers” to chase down a bird rarity. Those of you who see the movie “The Big Year” will understand that it’s still a thrill for me to remember the day in 1994 when a two-hour drive took us to a feeder near Tappen BC, where a Siberian Accentor, a once-a-decade visitor to North America, obligingly hopped about for us to admire, and “tick” in our life lists.
A thought: perhaps I am so drawn to birds and to companion animals because they absolutely live in the moment. “End-dates” are irrelevant. Food, sunshine, a cosy place to shelter at night and be safe during the day—my life is better when, like birds and animals, I appreciate what is there for me, and do not overly mourn what I have lost. (As I type these words, a magpie in the willow is loudly chattering a warning. Such intensity, only metres away.)
Facing up to Facebook
My mind skips to something else that feels like “a warning”. Recently, this message appeared on my computer: “Hi, Denise. You haven’t been to Facebook for a few days, and a lot happened while you were away.” What followed were photographs of seven of my friends who “have posted statuses, photos and more on Facebook. … You have also missed some popular stories”, the e-mail concludes. Whoa. Why would the Facebook computers focus on someone totally unimportant such as me, with such laser-like detail, when apparently more than fifty million people go to the site every day? My reaction to that seemingly personal e-mail is that it was …. creepy. I remembered a time long ago when my VW Camper Van was definitely being followed by a battered black Ford driven by a bearded stranger. I got out of that by driving to the police station. Other than choosing to miss all of the admittedly interesting things I find on Facebook on my occasional visits, is there any way to hide from the glare of that spotlight, to get away from being followed? In yesterday’s Globe, a columnist wrote about this issue, as if reading my mind. (He must have received one of those “a lot happened when you were away” e-mails also.) “After all,” the column read, “what’s the option? Not to use Facebook, in this day and age?” His conclusion: “Well, yes.”
Something to think about. Big Brother is real, and his name is Facebook. Still, if I do decide to opt out, “a lot will happen while I am away”. The computer more than ever links me to the world beyond my four walls, so I might have to take a deep breath, accept that millions of other people likely received a version of that “creepy” e-mail, and ignore what may be my better judgment. If I can handle MS, surely I can handle the minions of Facebook!
I hope that the autumn colours are as beautiful in your area as are the red sumac and the yellow larches high in the mountains that surround Kelowna. Perhaps I should take photos, to send to Facebook ….