How MS is Changing Our Future, Not Dictating It

I'm 22, and I'm making a fool of myself.

“Will you marry me?” I ask. Not on bended knee, or over a candlelit dinner. All the time. A bad day, a lull in the conversation, a moment of happiness — multiple times a day, I causally propose marriage to Ken, my boyfriend of four years. He smiles and nods, or says yes and continues the conversation. We're not engaged. It's not a serious question; it's part of our routine.

Ever since Ken was diagnosed with MS this winter, this has become a new way for me to say I love you; I'm here to stay; I'm in it for the long haul. It's almost an affirmation, as though I'm telling both of us that nothing has changed. But, of course, something has changed. Our lives are radically different than they were four months ago.

Four months ago, Ken was working in Oakland, embarking on adult life for the first time. He had an apartment and was learning to cook. I was gearing up for my final year of university, and preparing to join him in awkward, millennial discomfort as we figured out adulthood together. Our future was wide open.

That month, we celebrated Christmas together, then New Year's. And then, suddenly, he was in the hospital and we had a new diagnosis to adjust to. We promised that it wouldn't change us, but the diagnosis affects our every day. When we shop for apartments, I keep an eye out for handicap accessibility. When I think about finding work, I feel the pressure to provide for both of us, in case something happens and Ken needs to take time off. When my friends talk about graduate school and careers, I can't help but think of Ken; whether we can even move for a PhD program for me, when we know so little about what the MS means for his future and stability.

Our entire futures, his and mine, look different through the lens of this diagnosis. So I propose marriage. I make mental timelines for degrees and children, as though any of these plans give me more control over a thoroughly uncontrollable future.

What I'm trying to do is spit in the face of death. You can't dictate our lives for us. You can't take these hopes away from me. You can't take this man that I love. But at the end of the day, my plans do nothing. Because whether we're living together in a small apartment in the city, or married with children and a mortgage to take care of, he'll still have this disease. No matter how much I plan around it, we will always have to be flexible; willing to bend around treatment, illness, and potentially disability.

I may be spitting in the face of death, but in the end, it'll still get to us.

So I'm trying to tone it down a little, and be flexible. I'm trying to let go of the weight of the world, which tells me that I must make every decision now, right now, when I am still so young and have so much to figure out. And I'm trying to find peace, alongside Ken, in the knowledge that while this will always be a big part of our lives, it does not need to dictate them. I don't need to put off marriage because of this diagnosis, just as I don't need to rush into it to prove that this illness hasn't beaten me. Ken and I will find our own pace, live our own way, and walk our own path through this trial, side by side. Because I love him, I'm here to stay, and I'm in it for the long haul — ring or not.

Author: Sara Laughed

I'm Sara, a writer, recent grad, and American abroad. I graduated from college in December and promptly moved to the Netherlands, where I live with my boyfriend and our 11 plants. Follow along as I figure out my roaring twenties: I don't quite know what I'm doing, but that's not stopping me from writing about it!

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  • You have such an amazing attitude – and you are so lucky to have each other! My cousin has a terrible stage of MS and he has such a positive outlook too, it amazes me. I’ll be praying for you both and keep living happily – that’s the best any of us can do xoxox

  • This is absolutely heartbreaking. I can’t imagine going through what both of you are going through. I love your perspective and your strength. Thanks so much for sharing this. He’s definitely lucky to have someone strong like you by his side.

  • You amaze me. Seriously, your strength through all of this and your ability to be so open about your own journey is incredible.
    And I love that you say “will you marry me” to show him you’re in it for the long haul 🙂 I think that’s really sweet.
    Praying for you guys!
    Rebecca | Life as a Dare

  • Hi Sara,

    This post resonates with me in particular, since my mom has MS.

    I think what makes the disease so difficult to cope with is the fact that your loved one can be fine one day and not the next, allowing you to ignore it until you can’t any longer. You have to always be prepared, yet there is no way to truly prepare yourself.

    My mom was diagnosed back in 2001, but I’ve been doing research on MS and having to confront the fact that this might one day kill my mom on a daily basis is hard, to say the least. Your post has provided me comfort and inspiration in knowing that someone else is also struggling with relinquishing control over the situation.

    If you ever want to or need to talk to someone, please shoot me an email at colormekalie@gmail.com.

    Best,
    Kalie from colormekalie.com