Control Your MS Rather Than Let it Control You

An iPub Perspective Editorial

By Jennifer Wyman

The hard-won power of positive thinking opens possibilities. For me, a quadriplegic with multiple sclerosis, grief has come in cycles, and with it, a slew of difficult emotions. Changing my thinking to embrace the good in my disease, rather than letting it drown me in negativity, I control it rather than the other way around.

As a quadriplegic living with multiple sclerosis (MS), I am often told, “You’re so positive!” or “You seem to be very well adjusted,” or some condescending variation of this. What people mean is, “You are so positive for somebody who’s been dealt such a raw deal.” I mean no criticism. It’s a fair observation. I HAVE been dealt a crappy hand and I AM a pretty positive person. Believe me, it was hard won. I didn’t lose mobility all at once, like the person who had his spinal cord severed in a car accident. My injuries happened by degrees. For those of you unfamiliar with multiple sclerosis, briefly, it is an incurable degenerative disease. My immune system attacks my central nervous system.  This looks different for everyone. For me, MS has left me, in many ways, like the car accident victim, I’ll call him Doug.

We both have what doctors call catastrophic injuries. We experienced a significant trauma in which there is a measurable loss. As a result of this trauma, we’ve both been forced to learn an entirely new way of existing in the world. Now, dealing with trauma is a lot like dealing with death. There’s a circumscribed grieving period with obvious and not at all original stages. Denial, anger, bargaining, depression, and finally acceptance.

But unlike Doug, whose loss was instantaneous, my catastrophe happened in slow motion. Very slow motion. The goalposts keep changing. For each incremental loss, there’s a new grieving period. It’s not like I can put my grief on hold until the catastrophe is over. After the first dozen or so losses, however, going through the whole grieving rigmarole gets kind of old.

A woman with red hair sitting with her knees drawn up, elbows resting on them. Cracks have been Photoshopped onto her skin.
Image by Raphael from Pixabay

It’s like the permanent press cycle on a washing machine, or the instructions on a shampoo bottle—denial, anger, bargaining, depression, acceptance, repeat. After a while, the hamster wheel of loss becomes monotonous, droning on in the background like so much white noise, the damage it inflicts insidious, almost undetectable.

You know what wears a body down more than any loss? More than losing my mobility, my independence, my dignity, my body? The byproducts of this destructive cycle of grief. Fear. Rage. Frustration. Sorrow. Regret. These are understandable, unavoidable, and often cathartic emotions. But when they’re part of an interminable loop, they become consuming. Life takes a backseat to that which the illness has wrought. You’ve heard the Tony Robbins-esque saying, “You can’t stop bad things from happening, you can only control your reaction to them.” Yeah, that’s one of those sayings that sounds profound but is really just annoying. It rings true, yet there’s a better way of saying it. Life is a series of choices. I reached a point where I had to choose. Do I stay bitter and angry that I was dealt a lousy hand, or do I lay claim to it? Do I make it mine thereby making it my bitch? I was tired, so tired, of letting my disease call the shots.

Quadriplegia, ontologically, is not disabling. When you give your albatross, your demon, your burden free reign over your emotions, when you become paralyzed by anger, frustration, and regret wishing for an alternate reality, THAT is disabling. You don’t want a thing controlling you? Don’t feed it. So what else do you do besides regret this rotten hand? Love it—love your substandard hand. Now, I know that’s where the wheels come off the wagon for a lot of people. How do you love the thing quite literally crippling you? You love it because it’s yours, because you can’t give it away, because it’s pointless to hate a thing, because without the hate disabling you, you’d have no excuse to stop living, because, just maybe, it holds a bit of good. Way easier said than done. I’ll let you in on a secret—I’m a fraud. It’s true. A lot of the time I am scared, I am sad. In the darkest part of the nighttime, I feel regret, anger, and resentment. You know what I do during those times? I face the emotion and feel joy because these feelings mean I am still so very much alive. And when that doesn’t work I fake it. Pretending to be happy is a lot closer to joy than wallowing in impotent anger.

Is having MS hard? Of course. Do I wish I didn’t have it? Well sure. I also wish I had Idris Elba’s phone number and … I don’t know … mind control.

Years ago, I’d begun seeing a therapist who happened to be a practicing Buddhist. We were talking about worry and how to stop doing it. So she told me a story, a koan, a kind of Buddhist anecdote meant to provoke thought or enlightenment. I’ll tell you the most well-known one. If you know any koans, because of course who doesn’t know a koan or two, you know this one:

A man traveling across a field encountered a tiger. He fled, the tiger chasing after him. Coming to a precipice, he caught hold of the root of a wild vine and swung himself down over the edge. The tiger sniffed at him from above. Trembling, the man looked down to where, far below, another tiger was waiting to eat him. Only the vine sustained him. Two mice crawled down the vine and started to gnaw away the vine. The man saw a luscious strawberry near him. He plucked the strawberry with the other hand. How sweet it tasted!

A small bucket turned on its side with strawberries spilling out on a black background.
Image by Jesus Leal from Pixabay

After my therapist finishes her story, she looks at me smugly and expectantly. I blink once. And again. Crickets begin chirping.  I haltingly threw out my theory. “Death is inevitable, so why not go out eating something sweet?” I mostly joked.

“Actually, you’re mostly right. At the same time, you’re mostly wrong.”

“Thanks for your eye opening and not at all cryptic explanation.”

Stephanie merely smiled at me indulgently. “Don’t worry, girl. It’ll come to you. … Or it won’t.”

Nearly 20 years later, I think I’m beginning to understand. Tiger one is the past. Tiger two is the future. The mice? Time? Or, maybe, our mortality. Which, arguably, are the same thing. Either way, they’re the ouroboros of this existential exercise, devouring itself ad infinitum to no greater meaning beyond its own thingness. And, now I’m skirting very close to pedantry. Apologies. The strawberry and the decision to eat it are in the now. And, really, the only tangible part of the story.

I can only live in my tomorrow and in my yesterday in my head. The only thing that’s real is my right now. It’s the only thing that’s got a chance at bringing me panic, despondency, anger, hope, or joy. The best part is that I get to decide. I get to choose how I will respond to my now. What good can possibly come from wishing for the past or dreading the future other than a lot of time wasted and a boatload of negative energy? Right now, I’m warm and toasty under the covers, I’ve just had a cup of joe, and I’m doing my most favorite thing in the world—writing. All’s as it should be.

Credits for the featured image are as follows: Image by 🆓 Use at your Ease 👌🏼 from Pixabay

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