Skip to Accessibility Tools Skip to Content Skip to Footer

Reversal of Misfortune: A Cure Scenario

Folks, call me a goofball if you like, but I do dream up scenarios of all stripes, and one that’s been on my mind lately is what I would do and how I might feel if a cure for MS came along in the next few years. I’m certain I was inspired by the exciting news that things such as autologous stem cell therapy studies are now underway in the US. There are several therapies in the pipeline right now that might repair nerve damage and reverse disability, and though that doesn’t exactly qualify as a cure per se, it comes darn close, close enough to raise my hopes and start thinking about a possible future without disability.

A complete cure for MS would also have to involve persuading those renegade T-cells that constantly bazooka our myelin and axons to call a ceasefire and retreat to the nearest lymph node, where those pesky guerrillas could be retrained to fight viral and bacterial invaders only. This would require quite a skilled diplomatic maneuver, however. Perhaps the medical research community could take a few pointers from the State Department in negotiating those peace terms.

Since a complete cure is still a long way off, let us imagine the more likely scenario of therapies that reverse permanent damage and serve as medics on the battlefield as our immune systems remain on the offensive. Our mobility is restored, our vision returns to normal, our bladders and bowels do what they are supposed to do, we can enjoy sex again, no more pain or dizziness, and our energy reserves rival those of any nuclear power plant. Would we still think of ourselves as disabled?

It might seem like a silly question, but think back for a moment. Back to your first RRMS attack or if you have PPMS, to the initial onset of symptoms. And then recall the day you were handed the official diagnosis. Did you instantly think of yourself as a disabled person? How long did it take for your personal identity to absorb the MS label, to think of yourself not as a person, but as a person with a disability, a person with an incurable progressive disease? Didn’t it take a long time, and don’t you still struggle with it on a daily basis? If you’ve had MS for a decade or more, have you not now settled into it much more than when it was still new?

Maybe your journey has gone something like mine; I’ve always struggled to describe what it feels like to have MS. It can start with something simple and end up totally changing your mood. You get up, walk to the kitchen, open the refrigerator. You can do it all right, but you have to think about every motion, every decision your body makes to complete a task because one stray thought could cause you to drop a fork or grab at the air instead of a water glass. And you resent it, there are other things you’d rather think about. You remember an earlier time before the onset of symptoms when you could perform that very same task without thinking about your body at all. It is memory that aggravates, triggers the grief. You knew yourself back in the day, but that girl is gone, long gone, like an old school buddy you met on the playground in second grade. It was a beautiful friendship while it lasted, but you lost track of her years ago. Her face is even getting a little hazy in your memory now. But you remember how she made you feel. Clever. Important. Like you could do anything.

Now think of that in reverse. Your pre-MS body has been restored. But the memory of all those years with disability remains intact. You’ve developed habits to cope with those disabilities over the years. Perhaps you’ve been using a cane for balance, you’ve trained yourself to grasp a coffee cup with both hands, or grab an object with your good hand, or use a raised toilet seat or special recliner so your weakened legs don’t have to strain as much when you sit down. Perhaps you’ve become more sedentary, having given up even trying to take a walk around the neighborhood. While shopping at the grocery store, you make a beeline for those scooters with the baskets as soon as you enter the lobby.

But you don’t need to do such things anymore. All those years of disability now seem like a bad dream you once had, a nightmare that went on and on. When you look in the mirror, you gaze into the reflection of your eyes, into yourself, where your identity dwells. Do you see yourself differently?

I suspect we would not. Not for a long while. Consider the 85-pound bulimic or anorexic who looks in the mirror and sees a person that needs to lose more weight. Or the formerly obese person who loses 100 pounds and still sees her former self in her reflection. It is a form of cognitive distortion. The mind has not grasped the physical changes, the reality.

Would we need support services in reverse? We’ve attended private counseling, sought out the support of friends and family, online forums and in-person support groups. There are so many resources out there for coping with disease. But what resources would we have to cope with recovery?I am an MS survivor, I’m no longer disabled, Ms. Counselor, but I’m having some problems with this. I should be happy, but I’m terribly confused and afraid. I mean, do I still have MS or not? Could I have an attack again? Can you help me?

Think of the repercussions in the mental health and medical fields. Surely they would scramble to fill our need for readjustment. Would we be treated for Post-Traumatic Stress Disorder? Would our neurologists merely consider us to be “in remission” and continue to see us on a regular basis?  Would there be a new label created for us to reflect this breakthrough? Could this be called “benign MS” in the true sense—or something entirely different?

What would the repercussions be in terms of being on SSDI and Medicare? Would we lose our benefits? We’d still retain the MS diagnosis, but we won our SSDI claims based on our ability to work full-time. Depending on our ages and degree of restoration, our cases would probably be reviewed in much the same ways they are now. Realistically, therapies that could reverse damage would probably not bring the same degree of recovery to all of us. A significant number of patients would likely be so damaged that they might have some improvement but not total restoration.

It’s mind-boggling to think about. I’m guessing that when you dream about the day your disabilities might disappear, your reveries are much like those I have most days. Not those confusing scenarios I’ve just enumerated, but fantasies of gleeful abandon, of long joyous walks through the woods, of window shopping downtown, of briskly walking the dog all over kingdom come, of designing and planting a garden, of international travel and beach vacations in hot steamy climes, of complete self-reliance, and yes, we’d even look forward to effortlessly performing those infernal chores we used to despise: Housecleaning, laundry and putting out the trash. No matter how mundane the task, we would rediscover the joy of personal accomplishment. What a lovely thought indeed.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • rmdanielsom
    6 years ago

    As someone with PPMS, I don’t “live with” MS. I live in spite of MS. As far as I am concerned, the therapies Kim alludes to in her article cannot come fast enough. I want to dance with my horse again. I want to be able to care for my husband as he has cared for me these past five years; with respect, love and compassion.

    Bring it on!

    I have too many things to do to be stuck in a badly designed, and built, mobility devise (aka wheelchair).

    I have too many things to do with my life to worry over losing my ‘disability’ status.

    Like I did when I broke my knee 19 years ago and like I do from my go buggy, I’ll just do things differently. I’ll adapt.

    Kim, keep up the reporting/blogging!

  • Laura Kolaczkowski
    6 years ago

    I would hope that I could take all that I have learned about medicine and advocacy and find another use for it. It would be a shame to just walk away, wouldn’t it? Or would it? Thanks for making me think, as usual.

  • Kim Dolce moderator author
    6 years ago

    Gosh, I hadn’t thought about that. I’d have to go back to writing about stuff I wrote about before MS took over my subject matter and my life!

  • PeaceNik
    6 years ago

    Oh to take long walks on the beach in the sun … my all time dream again. Yes, I’d be more than willing to accept any psych help necessary to feel “normal” again. I miss my clear vision and balance the most and would GLADLY give up the personal/bladder/bowel issues. LOL What a joy this will be!

  • north-star
    6 years ago

    I liked this post. Several friends have run marathons and half marathons recently. As I envy them, I’ve also thought about what I’d do if cured of MS and damaged nerves regenerated. I used to run– would I have the discipline to train and complete a long distance race?

    Imagining the possibility made me laugh. First and foremost, I’d have to learn to go up and down stairs without clutching the railings! 🙂 It will take a lot of trust that my body won’t fail for me to walk confidently without a cane or walker, or touching walls, furniture. I won’t need strategies to get from point A to point Z and that will be weird.

    MS is one surprise after another. I’m optimistic, I’ve always thought there’s a cure out there. Wouldn’t it be great if the next MS surprise was that we could reverse the disease? Woo hop!

  • Kim Dolce moderator author
    6 years ago

    Hi North-star,

    It’s fun to think about, isn’t it? It’s great that you’re optimistic about the future, it’s more than just a pipe dream that those therapies that are being tested now could help you to train for that next marathon 🙂 Have a wonderful holiday!


  • Poll