Living with multiple sclerosis
By Jan Schulman 06/05/2014
I am living three lives. There is the one in my brain, which has been invaded with multiple sclerosis/white matter brain disease. Those lesions interrupt the message my brain sends to my body with regard to its movement. There is the one in my body, which has been weakened, leaving my gait slow and slushy, my hands wobbly, my limbs cramping and restricting, my speech slowed, my responses unresponsive. And there is my mind, of which I have lately become more aware than ever, because that is where I truly live. That is where I am always active, energetic, young, eager and ineffably strong. For it is there that I never age, never weaken, never hesitate. It is there that I am indefatigable. My mind reflects on itself constantly, reassuring, encouraging, hopeful.
At the beginning of the day, upon wakening, I throw back the blankets, skooch my legs over the side of the bed, stand up, and fall back onto the bed. Having had my first comeuppance of the day, I wait a few moments, reevaluate, reassess and then slowly move my feet under my body to the floor, support myself with my shaky arms and with great (and humble) hesitation, raise my body to its almost-balanced state. I wait. Wait. How are you feeling? I ask myself. Stronger today? Weaker? Sick? OK? Figure it out. Figure it out. What do you feel like?
Then it comes into play: My mind instructs me “Come on … just move! There’s nothing stopping you. Get up and get going.” And my brain moves in to comply, trying to send the message. But my body doesn’t get it. Or gets it a little later, or gets it a little less. Everything goes into slow motion. In anger and frustration my hand hits the bed. Hard, I think. But then I realize I have barely ruffled the blanket with my contact.
A slight headache begins behind my eyes. It doesn’t worry me too much. I have been getting them every day and they do fade away without lingering too long or causing too much discomfort.
“Enough of this,” I insist. Get the hell up and start moving. So I do. I rise slowly now to standing, putting my hand out to the dresser for stability. Is this a good day? I ask again
I am always worrying about my mind, about my one soldier in this lousy battle. Is it going? Is it strong? Can I still reason reasonably? Last night on Jeopardy (my linchpin lately for testing myself), the “final” question was, “Name two countries in the Americas that border each other and begin with the same letter.” Without thinking, I blurted out: “Brazil and Bolivia.” And then I asked my husband, “Bolivia is a country, right?” And we laughed. None of the contestants got it right and I felt so pleased with myself. Does that prove I am still me? Am I? Because sometimes it feels as if I am slowly fading away, disappearing, losing essence upon essence of myself. No … that is not happening. I read. A lot. I inhale books. It is the great love of my life. To read a good story, a good novel, a good book of any kind, is the absolute greatest joy I have.
It became necessary to quit a part-time job I had taken, thinking that I could still handle everything. I am still able to volunteer every week at FOOD Share, and to tutor my adult English learner once a week at the library. (I can’t bear the thought of giving up those experiences.) I made it to my grandson’s water polo match recently at a high school pool. I felt pretty proud of that.
I finally gave in and, at my doctor’s insistence, bought a walker. I hated the image of myself using a walker, but have found that it gives me greater stability and that I can walk more easily, pushing the walker ahead, which forces my feet to move more quickly to keep up. At least that’s what it feels like. And I can lean forward onto the walker evenly so that my balance is not put off.
Next step was obtaining a special disabled parking placard for my car for I can drive just fine; I can sit and recline and lie down. But as soon as I rise, my body doesn’t understand what my brain wants and my mind cannot come up with enough threats to make my body cooperate. I won’t even describe the constrictions of my muscles all over my body, which are incredibly painful. Now at the computer, I find my tremors make it difficult to contain and control the mouse, to keep my fingers on the “home keys” of the keyboard and to type without multiple errors. But … I can do it. It just takes a little longer (I used to type 140 words a minute … now I’m lucky if I do 60).
So. What now? Doctor says there is no “usual” line of symptomatic episodes. It could ease up, get worse, get worse and then better, get better then worse. I took a prednisone treatment (three days in the hospital for the drip treatment and then taking pills at home). My MRI showed no additional lesions on my brain and that was good news. And after the doctor described the MS treatment/meds that could be used and their lousy side effects, I asked that we hold off. I don’t want to feel sick, even if I feel stronger and less off-balance. I don’t want to feel miserable all day. I want my joy to stay unfettered. I want my hope to remain strong. I want my confidence to build, not wane. I must continue to perform and live. Some friends and relatives recommended that I try cannabis for the cramping and depression, but my neurologist, who admitted that many of her patients use it successfully, is not a prescriber and suggested that I use another doctor for a prescription for marijuana products.
I know that when I am sitting down and talking with people, unless I am getting very tired, which I tend to do so easily now, nobody has an idea that anything is wrong with me. That’s the way I like it. The trick is getting my three lives to appreciate and respect each other. I’m working on it. And I honestly believe I can do this. Because the mind is mightier than the MS. Anyway, it is if I say it is … for now.
Jan Schulman is a resident of Oxnard.