So, today is my anniversary. It’s not the anniversary of my wedding. It’s not the kind of anniversary where people usually give presents (though if you’re inclined, you know where to find me). Today is the 10th year anniversary of the most significant event in my life. Ten years ago today, I sat in a neuro-opthamologist’s office and listened to her say, “You have multiple sclerosis.”
It’s not actually the 10th year that I’ve had MS. I had symptoms easily 3-5 years prior to being diagnosed. And, it’s not the anniversary of the worst day of my life. In some ways, you might even say it was the best day. But it feels like some reflection is in order since it’s the 10th year that I’ve attached this diagnosis, in part, to the definition of who I am. And, since I’ve always chosen to be open about having it, I might as well make that reflection public, too.
Mariska: Proper noun. Fuse Pilates creator. Pilates teacher. Writer. Painter. Creative Director. INFJ (according to Myers-Brigg). Animal lover. Chocolate-addict. Foodie. Cynic. Liberal. Half-Dutch, Half-American. Washingtonian. Former-vegetarian turned omnivore. Friend. Smart-ass. Wife. Sister. Daughter. 5’6”, thin, green-eyed brunette. Has MS.
A couple of months ago, I started writing a memoir inspired in part by the experience, because honestly, having MS has a lot of humor around it if you choose to look at life through that filter (I do). And, today, I’m thankful that it introduced me to Pilates, because even though MS has made some things difficult, I’m still pretty good at Pilates. If you are struggling with an exercise, I will probably not feel badly for you or, or more importantly, think you cannot do it (maybe just that you cannot do it yet). Because I can probably do it, and I assure you, you are most likely stronger than I was when I started doing Pilates. I have very high expectations for you, and that has made me the kind of teacher I am, and has helped shape the kind of workout that Fuse Pilates is.
Ten years ago today, I was seeing double. This entertaining symptom happened the day I moved to Washington, D.C. (without a job). I had just ended a relationship that I’m 98% sure would trump your story about your worst relationship ever. I had trouble walking from the couch to the bathroom.
Ten years later, my life is vastly better, and what was once a new and frightening thing has become just a small part of who I am. I find MS to be a great reminder that health is not something to take for granted. It’s also an amazing motivator to work out regularly – even better than a slowing metabolism or a sense of vanity.
For a glimpse into life with MS, I thought I would share a bit of my memoir-in-progress – a snippet of a chapter I’m writing about the dumb things people without MS say to people with MS. For those of you reading this who said any of the following to me, I forgive you. I don’t take it personally. Just remember that people with a chronic illness cannot only be perfectly fine, they can be awesome.
There is something you will learn very quickly if you are ever diagnosed with a serious illness. People are profoundly inconsiderate. Of course, some people really are like that in every aspect of their lives; that’s just their natural state of being. Mostly, though, you encounter what I’ll call “accidental assholes.” Let me explain.
If there’s one thing that never ceases to amaze me about having MS is that acknowledging that I have it invites whomever hears it to have one of a couple of predictable responses.
The first, and the most common, is that people will tell me a story about the person that they know (in real life or just as likely, someone famous) who has MS. This person is probably in a wheelchair, blind in one eye, using a walker, on long-term disability, or bed bound. They might be dead. They definitely are not perfectly fine.
People in my life have told me about their family member, friend, or friend of a friend who has MS. They’ll tell me about J.K. Rowling’s mother, and remind me about Annette Funicello, and Minnesota Senator Paul Wellstone (who died in a plane crash, which is not, turns out, a symptom of multiple sclerosis). There are also a whole lot of semi-famous people you’ve probably never heard of (I know I haven’t), and the fictional president in the West Wing, played by Martin Sheen, who neither has MS nor actually served a term as president.
Richard Pryor also comes up.
Now, according to several reports, Richard Pryor didn’t live the healthiest lifestyle. He had multiple heart attacks, a history of drinking and drug abuse, and even once set himself on fire while freebasing cocaine, so there were definitely some co-morbidity conditions in his overall health profile. Of course, it was unfortunate that he developed multiple sclerosis, but personally, I’ve never liked the comparison (what with not being a drug addict nor setting myself on fire). At least I remember watching Annette Funicello on the Disney Channel when I was a kid (reruns – I’m not THAT old), and she was a ballet dancer and a Mouseketeer, and I always wanted to be a ballet dancer (and, probably had moments of wanting to be a Mouseketeer).
Next, there will be a brief moment where the person who found out you have MS will wax poetic on how very, truly, incredibly sad it was that their friend, family member, casual acquaintance, friend of a friend, or famous person they admire or have heard about or read about had or has MS.
At first, this confused me. It made me angry. Honestly, it scared me because it made me think of the worst-case scenario(s). Now, I see it for what it is. People have no idea what to do when presented with certain information, so they do a quick brain scan to try to find a way in which they can relate. It’s not meant me to be malicious. It’s a horribly failed attempt to try to say “I understand,” even when they clearly do not.
Lately, the most common reaction I’ve gotten has been “you know, Montel Williams smokes pot for that.” Actually, I do know that.
Which brings me to predictable response #2.
When someone knows you have a chronic illness, they will forward you every newspaper article, website, blog post, YouTube video, Facebook page, Twitter post, etc. on any new drug, treatment, death or injury from new drug or treatment, general statistics, research, theories, and introduction to “what is MS” that they encounter, in addition to anything directly or marginally related to MS, including, but not limited to, neurological diseases, autoimmune diseases, genetic diseases, the brain and central nervous system, and new and up-and-coming scientists, probably from China or the Netherlands. They’ll call you to let you know about a story that will be appearing on the local news, Dateline NBC, Oprah, Discovery Channel or a local cable channel.
Or they’ll tell you about something that they read or saw, but that they don’t remember exactly where. “Look it up. I’m sure you’ll find it. Xoxo”
They will send you absolutely anything and everything they come across that has anything to do with what you have (or what they think you have). Sometimes, they’ll get it wrong. I have received several notifications about stories on muscular dystrophy, for instance.
I imagine if I finish this book, and it gets published, and anyone ever hears about, they’ll forward the link to their friend or friend of a friend with MS or with muscular dystrophy (even though they are, in fact, totally unrelated).
The third most common response is “but you look so healthy,” or any derivation of that basic concept. This implies that people should be able to “see” a chronic illness in the same way that they see hair color or weight or if someone can match their shoes to their outfit.
This depends on a lot of things, of course. First, most symptoms of MS are invisible. Parasthesia, which includes strange feelings like feeling like bugs are crawling all over your skin, is not visible. For several years, I had tingling and numbness from the waist down like what it feels like when you sit on your foot and it falls asleep. That’s not visible. Dizziness isn’t visible. Blurred vision isn’t visible.
If you know what you’re looking for, you might observe my left calf muscle goes into a spasm when doing some specific exercises. You might notice the slightest bit of a limp, depending on the day. But mostly I’ll “look so healthy.” (By the way, did I mention I do Fuse Pilates? It doesn’t wonders for your physique).
Another common reaction to someone knowing about your chronic illness is that whenever they see you (or call you, write, or email), they will ask (in a very quiet voice), “How’s your health?” If they see, call, write or email a mutual friend or acquaintance, they will ask him or her how your health is.
If the person asks you and is near you, he or she will gently touch your shoulder, upper arm, or hand, simultaneously to the word “how” or “health.” I guess they imagine that we don’t have anything else going on in our lives, or that the health thing is the most important. Of course, this is a kind and well-intentioned question. It’s just so boring after a while. Honestly, I just don’t spend all of my time thinking about it or worrying about it. So, this question still catches me off guard.
What do I say?…
On this, the 10th anniversary of being diagnosed with MS, I’d have to say, I’m pretty awesome.
If I ever finish this book, I can tell you that there are only going to be a couple of chapters on the MS thing, and the rest will be on other topics. If you refer back to the definition of me, MS is just one part, and it’s hardly the most interesting.
(All pics – post-MS diagnosis)
What am I doing today to celebrate? It’s just going to be a typical day in my life. I’m going to work on some training materials for Fuse, have a couple of meetings at the studio, and take a Pilates class. I’m going to lunch with a friend. I might go for a swim. I’m going to spend a little more time than usual being thankful for the wonderful people in my life and the opportunities that I’ve had. And I’ll take a moment to reflect on perspective – and what a blessing it is to have it.
Stay hard core,