34 Things I Wish Multiple Sclerosis Hadn’t Shown Me

It’s my 33rd birthday, so I’m reflecting. Perhaps like you, I’ve been in numerous weddings, and I’ve “liked” dozens of engagement statuses and new baby announcements. This is not an essay on those things, though. Not exactly. I’m coming to terms with choices I’ve made and didn’t make, the feigned ambivalence I’d give off about marriage and babies. At this age, I want partnership. I want motherhood. And at this age, I am concerned that it is too late for either. But this is not an essay on the regret one experiences in her thirties, either. Not exactly.

Nearly ten years ago, when I was 24, I’d just started graduate school. Things would fall out of my left hand inexplicably and it was difficult to walk sometimes. Just before Thanksgiving, I went in for an MRI that revealed I had lesions all over my brain and spinal cord. A few weeks later, right before Christmas, I was diagnosed with Multiple Sclerosis. The day of my diagnosis was normal: I had class. I went shopping. I told my parents. I did not rage. I lived my life like it was still mine to live. I didn’t think about the compromises I should have made. This is not an essay about being single in your thirties. This is an essay about the ugliness of sick. About the discoveries it forces upon you. Like these:

1. At 24, I wore five-inch heels and walked everywhere.

2. When I slump over, I can’t tell if its poor posture due to age or because my spine is becoming weaker. The image comes to my mind of my last infusion of Tysabri, when they wheeled a woman in curled up like a human claw. Her face didn’t look that old. She was adorned with pillows. I think, Is that my life?

3. I don’t know exactly how many lesions there are in my brain; but I do know how many men there are right now with Multiple Sclerosis who make a name for themselves and their disease: Jack Osbourne, Richard Cohen, Montel Williams, filmmaker Jason DaSilva … and most recently, this guy who wrote about his recent diagnosis on the day of his baby girl’s first steps.

4. Everyone told me to live my life as normal as possible. So I did, I have. And I am so alone in this normalcy.

5.  Perhaps I will not die from MS but I will most certainly be alone in this. And that feels like a death in itself. I am terrified everyday

6.  When I was diagnosed I went into a state of numb denial. I did the treatments, I made the phone calls, I spent hours on the phone contacting doctors, specialists, insurance agents. I thrived academically. I drank a lot. I looked good. I know this because everyone kept telling me so.

7.  “First went the heels, then came the cane, then the wheelchair.” I’d started telling folks at school. Turns out a lot of people know someone who’s related to someone with MS. This person’s mother has it. She’s in a nursing home. She is not a senior citizen.

8. After too many nights of unbelievable back pain, I bought my first pair of Danskos.

9. At year two, I stop going to group exercise classes, because they keep the studios too warm.

10. After year four, I notice a limp on my left side when I walk. I ignore it, but I notice it. I think, This has happened before. I know my body will start to compensate if it hasn’t already.

11. Whenever I see Jack Osbourne or Jason DaSilva, both men around my age, I am not happy for them. I resent their happiness, their content natures when they thank their wives. I think, where are the women with this?

12. When my left side gives out, I wonder how could I hold a baby? How could I change a baby’s diaper? I see my friends’ posts about their kids’ soccer games and outings and I think about how I wouldn’t be able to be outside for too long. I think about my imaginary child resenting me.

13. “We tend to prefer 33, as the cutoff age. Things get … complicated after that,” is what the neurologist says about having children.

14. I watch DaSilva’s documentary, When I Walk, and burst into tears when it ends with him and his wife, pregnant.

15. By year seven, I cannot walk more than half a mile before collapsing. I can no longer run, period. I have the scars to show for when I’ve pretended I still could.

16. The best and worst thing about being numb is that it is a temporary condition. Two things are inevitable: The numb part dies or wakes up.

17. When I worked at Vogue, Anna Wintour said how the outfit starts from the shoes up. She’s right. That goes both ways. You stop caring as much when your feet look like bricks.

18. The neurologist asks how I’m doing. She asks about my boyfriend, my last one. I say he’s no longer around. She’s quiet. She then happily tells me about patients who have children “on their own.”

19. After giving birth, we are at risk for a relapse. I wonder if my partner will be there to help. Then I wonder about who the hell would want to be my partner. And the cycle of loneliness begins.

20. I need these men with MS who are married with children and take the mic for the rest of us to recognize how spectacular their normalcy is.

21. This December will be year ten. I work out alone at home where I can keep it ice cold. I haven’t worn heels in years. The last time I did, I looked drunk the way my left foot kept turning inward. I never knew how important a fully functioning big toe could be. My left hand has tremors, as does my face especially my eyelids. I take an anti-seizure medication for that.

22. I wonder if I should have settled, if I should have latched on for dear life to any boy that would have me at the age of 24. And I did have a boy then. We tried our best. We failed. When we ended I listened to others, and to myself, that I was worth more. This is a disease, though, that changes how you define worth.

23. There are plenty of women with MS who have children. I see them on our listservs, so many of them were diagnosed after having their children. Sometimes I wish I hadn’t been so thorough in finding out what was wrong with me at such a young age. Maybe I could have trapped someone.

24. During the infusions, when they ask me if I’ve developed cancer in the past six weeks since my last infusion, I contemplate what I’d have to do if pregnant. I’d have to stop taking this medication but it’s okay because in pregnancy women with MS actually improve.

25. On OKCupid, a guy asks if I’d like to go on a hike.

26. Am I the only one who’s wondered why there don’t seem to be any female counterparts to these men?

27. I have five pairs of Danskos. I wear them all the time and I hate them all. If I have a date, I wear my only pair of wedge heels and arrive early so I’m already sitting when he shows up.

28. There’s a particular sense of urgency to my writing. Cognitive dysfunction and decline are signatures of MS and I don’t know if or when these will start, if they haven’t already. Writing is a way I tell the world I was here, I mattered. Please listen to me while I still have something to say.

29. This July, I turned 33.

30. The only famous women with MS I read about are the ones who have died or are murdered by their caretakers. Or Mitt Romney’s wife.

31. I am 33 years old, single, childfree and I have an incurable disease that while not fatal kills you slowly.

32. I was once a ridiculously beautiful woman. I still am. But I don’t know how to get anyone to notice when all I can muster is typing this letter.

33. I’ve gained weight and I exercise and eat right but the truth is I am mostly sedentary. Many days the notion of walking to the bathroom is enough to exhaust me for hours. I think of the woman in the wheelchair next to me who described fatigue as this: “It’s not like you’re crossing the street and a bus is barreling towards you and you’re too tired to get out of the way. Fatigue means the very contemplation of a bus barreling towards you is enough to put you out.”

34. There are certain things too terrifying to write.