To M.S.,
You blew into my life nearly six years ago, wholly uninvited, and you stole the last half of my senior year of college.
When I should have been finishing my last term and saying my goodbyes, I was instead waiting for my double vision to cease, getting MRI after MRI, buzzing with corticosteroids, trying to make peace with injecting myself every day for the rest of my life. Oh, yes, and crying…. there was lots and lots of crying.
When those doctors crowded around me that January day and told me what was wrong with me, the air went out of my lungs. You snuffed out whatever feelings of invincibility had survived past my teens. You reduced a happy and otherwise healthy 21-year-old to a fearful child. You made me anxious of my body’s every twinge. You drowned me in panic with thoughts of a life spent in a wheelchair.
You made me afraid. And for that, I will always hate you.
I hate you because no matter how fast I go, I can’t outrun you. You’re always just a step or two behind, breathing down my neck to make sure I don’t get too comfortable. You’re a tireless enemy who only feigns surrender.
Of all the things for which I hate you, however, I hate you most for the look on my mother’s face when I told her what I had. When I said “multiple sclerosis,” her heart cracked. All she could say was “no,” and I watched her literally sway with the pain of it. If only for that single memory, for the look on her face that I will never forget, I fucking hate you. And for every moment you’ve taken away from her since because she’s spent it worrying about me, I hate you more.
I hate you for isolating me from my peers, who can live lives with just conventional worries.
I hate you for the hours I’ve spent in MRI machines trying to lie perfectly still, worrying what the results will say.
I hate you for giving me secrets to keep — from new friends, new employers, new love interests. I hate you because anyone I date seriously ultimately has to learn that I that I am much more flawed than normal, that I’m out-of-the-box defective. I hate you for making me, at times, feel less worthy of another’s love because I don’t ever want to become a burden.
I hate you for making me hesitate to ever plan anything too far in advance.
I hate you for making me fear becoming a mother — for the fear of the guilt that would swallow me if my child couldn’t skip out on these bad genes…. knowing I could have prevented him or her from ever having to stare down the barrel of a life with you in the sidecar.
I hate you for so many more things, but I’ll stop now to tell you that, to your chagrin, you have not wrecked me in these six years.
You’ve certainly changed me, worn me emotionally — and being the merciless, caustic thing you are, I’m sure you’re not quite done with me — but I’m still here, still kicking, and I‘m pretty tireless too.
I just wanted to make sure you knew that you will never define me.
Hang in there I am a 10 year vet, there are better days
You described so well the feelings I have had for more than 2 decades. There is no way to help, but you are on a boat that may not be pretty, may not be going anywhere important, certainly wasn’t chosen, but is filled with people like you and I who care and understand. And on the rare day the sun comes out, the view could be worse!
Thanks Deb… “may not be going anywhere important” that made me chuckle a little, which is something I need desperately today. Definitely when the sub is out, the view is nice. Just have to be patient for this exacerbation to pass… :) wishing you love and light
Oh boy….I am kind of new at this MS thing, being 49 yrs old and diagnosed last Feb. My life has changed in so many ways it is hard to count. I feel for you. You are so young yet. There are worse fates. Take the good days and run as fast as you can……will be watching you. I hope tomorrow is better!
Hi Diana. Thanks for your message, and I’m sorry for your own diagnosis. You sound like you have a really good outlook on things, though, and I think that’s as important as good clinical treatment. It’s important not to surrender and to keep your head and heart afloat no matter how garbage things seem sometimes. I know it could so much worse; I try never to lose sight of that. And I’ll do my best to take the good days and run. I really like that. Sending love and light your way. -Andria
I have a body, but I am not my body. My diagnosis in 2002 was a crushing blow. I have thoughts but I am not my thoughts. Daily challenges are my training. I have an affliction but I am not my affliction. Much love to you
I feel you…. it feels so unfair sometimes, but then again, life doesn’t really seem too choosy about who gets dealt what hand. It’s just hard to remember not to take MS too personally. Thank you for the great advice. I also love the saying “I have MS; MS does not have me.” Sending love and light to you. -Andria
wow,really gripping
my daughter diagnosed in april 2010,shes 17 doctor says she has it since 14
when u talk about ur mother i felt that way i hope i didnt show it,
nearly a year on now and i stil blame myself why her not me,
Thanks for your comment. My mom has said the same to me — “why couldn’t it be me instead of you?” If it helps at all, I’ve never so much as wondered where or from whom i got MS. It’s a crap hand to be dealt, but some people get dealt really terrific hands and play them poorly; it’s my responsibility to play this shitty hand well :) I know my mom would have this disease for me if she could rather than have me be sick, but I love her so much I would never choose that. I’d rather die a thousand times than ever see her sick, and I’m sure your daughter feels the same for you. Sending love your way.
I also want to say that the idea of my mom or dad ever potentially feeling guilty ever about this is as bad as the disease itself. Please don’t blame yourself. All we want is for our parents to be happy and to take care of us, and it sounds like you’re doing a great job with your girl.. trying to understand what she’s going through and being there for her. Definitely one of the scariest things about MS is that one day I won’t have my mom to see me through the worst times because she’s absolutely everything to me. It makes me infinitely more grateful for our relationship.
thnk u,hope ul have ur mam for many years t come
its hard copin with ms its th uncertainty that th worse,i remember when my daughter was first diagnosed i went into her bedroom every mornin before i went t work in the end she told me t f*** off,i needed t check she was ok no symptoms b4 i went out
ive steped back now i told her t tel me or ring me when she wakes up if she has any symptoms,
ive told her its harder 4 me than it s for her she laughs lol
once family are ready t help that makes it easier t bear 4 ye
I’m sure she’s just angry, though not really with you. I think the teen years are hard enough without this super huge cross to bear. I know I gave my poor mom hell when I was in my teens, and that was just because I was young and being a pisser — nevermind feeling singled out by a crappy disease. She’ll get through it and your relationship will definitely get better with time. :)
You speak my story. The symptoms, the look on my Mom’s face, the MRIs. The only difference was that I was 24 and it was 2006.
I think I’m a pretty positive person for the most part, but every so often it’s not all that easy.
I get it. This brought tears to my eyes as I read it aloud.
I get it. I really do
oh, Beth…. I’m so sorry it had to happen to you too. :( I find the emotional stuff w MS harder to deal with than the physical, for sure. By the way, I have no idea how I missed this comment; I’m so sorry I took so long to see it and respond. I send you a huge hug, and I’m here if you ever want to talk.
This letter felt like it came right from my heart. Nothing I write to explain the same feelings can ever translate into this.
I am sorry and thankful for this letter.
I feel the same as you I beat thyroid cancer now I get this MS shit on March 30, 2012 I am 38 with four children & husband I hate that they worry about me. I can’t remember much but I can remember when I got diagnosed. Just last night I was in the ER for over 8 hours because the doctor sent me there I pulled out my list. I told them I my upper part of my legs was tingling & very sensitive & below my knee to my foot I was having spasms & pain. The doctor says pain is not typically associated with MS….I’m like so what the fuck am I lying…everyone MS is quite different. This is just so frustrating
It definitely is very frustrating. And it can sometimes feel like you’re trying to outrun the reaper… not to be overly dramatic. MS isn’t cancer, but it’s devastating in its own right. Wish you lots of love and light (and great medical care!). If you’d like to write a letter, I’d love to post it. Just send to letterstoms at ymail dot com. (Have to write it like that so spam bots don’t get me!)
I just have to say that this letter was beautifully written and devastatingly true. The part about having children especially. I was diagnosed almost exactly 2 years ago: age 24, 1 year married, 5 months post-Masters and 4 months into a career. Children was next on my list…
But, even though the decision-making was agony, and I still worry about my choice – I’m currently typing this with a beautiful, sleeping baby boy beside me. There’s life after diagnosis.