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.