I was diagnosed with multiple sclerosis nine months ago. I’ve been struggling with how to write about it ever since. I wanted to find something funny, or at the very least, insightful, to say about the experience. But so far I haven’t found anything remotely funny about it and my insights are banal at best, self-indulgent at worst. Mostly what I can think to say is that I hate that have MS. (See, I told you.)
But I feel compelled to try to write something, because writing is how I make sense of the world. And if ever there was something I needed to make sense of, this is it. So here goes…
My journey to MS has been a long and complicated one. For almost nine years, I had troubling neurological symptoms and abnormal brain MRIs. I had some, but not enough, evidence of the disease. Then last fall, I developed new symptoms that my doc thought might be coming from damage in my spinal cord. Turns out, he was right.
In MS, the body attacks itself by eating away at the protective covering around nerves in your brain and spinal cord. It interrupts the way messages are sent and received throughout your central nervous system. Because your central nervous system controls most of the functions of the body and mind, this means MS can affect nearly anything and everything you do. It can affect your ability to see, speak, go to the bathroom, think clearly, and/or properly use your hands, arms, feet and legs. In one person, MS can mean a bit of tingling. In another, it can cause severe paralysis. And no one can predict the course your disease will take. It’s a crapshoot with your quality of life on the line.
The day I went to get my doctor’s suspicions checked out, I walked out of the hospital and his nurse called before I even started my car. “We need you to come in to talk about your MRI.” You know you are not getting good news when you get a call like that. My doctor walked into the room. He told me I had MS while he was still standing up. He said now that it was in my spinal cord in addition to my brain, it was time to start treatment. I asked if I had to. I was scared. He said that the spinal cord is “valuable real estate,” and while none of the medications could stop the damage from occurring, they could potentially slow it down by 30%. Those weren’t the best odds I’d ever heard of, but I put my money on the drugs anyway.
So that is where I am now. I don’t know if the medication is working. I won’t ever really know because how do you measure a drug that is 30% effective at preventing something that may or may not happen? I do know that it has made half of my hair fall out, which I’ll admit with shame has been harder on me than I thought it would be. (To all the women who have gone through chemotherapy: Every single one of you is a stone-cold badass.)
I take my pills everyday and very occasionally try to sort through my feelings about the whole thing. Some moments I feel like this is no big deal and I’m stupid if I feel stressed about it. Other times, I feel a resigned sort of sadness. Most of time, however, I am just not sure how to feel about it. Feeling sad seems defeatest, while feeling upbeat about it seems naive. The quote I keep coming back to about living with MS is from American writer, Joan Didion. In her memoir, The White Album, she writes about her experience of being diagnosed in the 1960s. “I had, at the time, a sharp apprehension not of what it was like to be old, but of what it was like to open the door to the stranger and find that the stranger did indeed have the knife.”
Leave it to Joan to get it exactly right.
Practically speaking, I am doing fine. I have been extremely lucky so far. The worst thing I have is neuropathic pain in my feet. This pain, while not intense, is constant. Like 24/7 for months now, constant. So my feet hurt whether I’m sitting still or running around. They hurt in the morning, the afternoon, the evening, and in middle of the night. They hurt all the fucking time. And it is quite possible they will feel like this everyday for the rest of forever. Sometimes I catch myself feeling frustrated or sorry for myself about this. When that happens, I almost immediately send this transmission out into the ether: I don’t mean to complain! If this is all that I have to deal with, I’ll take it! I make bargains with my MS. I’ll take the pain, if I can keep my eyesight. I will gladly accept the numbness, if I can walk without assistance. Give me tingling in my hands, but leave me control of my bladder.
So in many ways, for me, that is the worst part. At least right now. It’s the fear of the unknown. I think we all fear the unknown to a certain extent, but in this case it’s a little different because there is a clear and present danger. To take Ms. Didion’s metaphor a step further, it’s like being locked inside a building with the stranger who has the knife. You know he’s coming for you, you just don’t know when, or how much damage he’s going to do.
This bit of writing aside, I don’t sit around obsessing about my health and I try not to give into self-pity. I am, at this moment, a healthy, active woman with far more immediate fish to fry. Like the literal fish I have to make for dinner. Or the metaphorical fish of throwing away a bunch of my kids’ junk before they get home from camp. I work every single day at making sure MS doesn’t become more important than it needs to be. This involves a healthy reliance on denial. And champagne. And Pringles. But most heavily, I rely on my husband, without whom I would fold like a cheap suit. And my dear, dear friends and family, who have made this stupid disease almost worth having by being so unbelievably nice to me these past months.
So as promised, this essay was neither funny nor insightful. It actually turned out a bit more self-indulgent and gloomy than I had hoped. I’m sorry for that. But this is just my first try and it has only been nine months (and honestly it has been a pretty shitty nine months at that). Please know I am working on getting back to the annoyingly positive attitude I once had. And next time I write about this, it will be filled with exclamation points and smiley faces. Because who doesn’t love writing filled with those? For now, I just thank you for reading. I’m not sure I made sense of anything by writing this, but I do feel a bit lighter for having shared it. And that would not have been possible without you!!!
Disclaimer: I usually write about my life and share things that I think are funny or entertaining, but that hopefully don’t get too personal or over-sharey. But to prove I’m not a one-trick pony, today I’ve written about something intensely personal that totally over-shares and isn’t funny at all! Enjoy!
My doctor tells me that he believes I may have Multiple Sclerosis. He isn’t 100% sure. He said it could also be this other condition that is apparently so complex that even Google can’t paint me a clear picture of it. But he says he doesn’t really think it’s that – and thank goodness because it would be so much more convenient to have a disease everyone has already heard of. Less explaining; more sympathy. And let’s be honest: Sympathy is the only good thing about having a disease in the first place.
Over the past few years, I have had every test imaginable. Some have been positive. Some have been negative. Recently, more evidence in the “for” camp has emerged. But MS is a slippery bastard and I’m told it isn’t always easy to diagnose, ‘a diagnosis of exclusion’ they call it. So at this point it appears that my white matter disease falls into a grey area. In other words, they know something is wrong in my brain, they just can’t tell me exactly what it is.
My doctor told me there is nothing to do but wait and see. Since I am nothing if not obedient, for a while I did this. And as I waited, I considered whether or not to fall apart over this situation. I even tried it for a short time – doing an internet residency in Neurology and learning just enough to scare the shit out of myself. This was not a good idea. But eventually I decided that the possibility of having MS – or the actuality for that matter – is not something worth going to pieces over. For one thing, who has the time? For another, I just don’t want to give my life over to that kind of fear. When I think like this, I feel righteous and strong and capable and in control. I like that feeling. And I feel that way most of the time. Most of the time.
But there are times, in the quiet moments when I’m not thinking about the things I have to do, or what to make for dinner, or how I can crash my minivan for the insurance money without hurting anyone– that the fear sneaks in. It pounds at my chest wall and swirls in my gut. It keeps me awake at night with images of “What if?” Fear will do that to try to get my attention. Just like a tantrum-throwing child, fear gains strength from my tolerance and responsiveness. I used to think that worrying about something could prevent it from happening. Like my worry was proof that I was not so egotistical as to believe that it could not happen to me. I thought that if I worried about it enough, the worry would form a shield over me forcing the Big Bad to skip me and move on to some arrogant sumbitch who thought they were invincible. (Ironically, it was pretty arrogant of me to think that.)
But now I know better. The truth is that things happen whether you worry about them or not. Fear – or the absence of it – cannot stave off disability or prevent disease from striking or keep your loved ones safe. If only it could. Unfortunately fear can do many things, but it can’t change your fate, except maybe to ruin the present while you are waiting for the thing you’re afraid of to come and get you.
This brings me back to my doctor’s “wait and see” advice. The more I thought about it, the more I thought that waiting for something like MS to show itself – or not – seemed like just another way to be afraid of it. So I decided against waiting. I’ve opted instead for denial –stuffing a sock in the mouth of my Jewish ancestry and giving my Northern Irish roots permission to take over (which is fine considering the Jewish part of me still has to whisper M.S. when she talks about it). Denial, while not normally my go-to response, is the strongest response to this situation. It is a brick wall, an impenetrable fortress. Denial will kick fear’s ass and stuff it down deep inside where it can’t take anything away from me. Because once again, like a whiny child, fear will not perform without an audience.
So even with my doctor’s advice to wait and see, I’ve made up my mind that I am not going to sit around and wait for MS. I know that it will get my attention if it needs me. And until that day comes, if it ever does- I will wait for my kids to stop fighting with each other, for someone to invent zero calorie potato chips that tastes the same as regular, for my husband to take an intense interest in housework – but I will not wait for MS.
Goodness knows it won’t wait for me.