MS University

Michael Wentink   
Blogger, A Road Less Traveled...  

“So often times it happens that we live our lives in chains
And we never even know we have the key.”

-Eagles, “Already Gone”

When I was younger, I couldn’t wait for the day I finished high school. One of my clearest memories of elementary school was sitting in third grade, daydreaming about graduation; when life would be about playing games with friends all day and eating Oreo cookies whenever I wanted – oh yes, I was confident that was what the future held.

At the time, college was beyond my comprehension. What I did understand was that I had a long way to go until I reached the magical 12th grade. I couldn’t wait for when my days weren’t spent in a classroom, adhering to schedules with regulated times for arrival, departure and even eating.  With my teacher’s lesson plan playing as background music, I sat at my desk, counting fingers and realized – nine … more … years. My unofficial countdown had begun.  

FATHER KNOWS BEST

So you can imagine the sadness I felt when my Dad declared, “You’ll never stop going to school”. I now know he didn’t mean it literally, with teachers, tests and report cards, but rather that I’d always be learning and adjusting to new situations in the classroom of life. To hear this as a little boy was a damper to my graduation dreams, but they were also prescient words of wisdom.

Entering the workforce, getting married, becoming a first time parent - all these special events are celebrated, but they also mark the beginning of a journey that involves learning new subjects, reciting memorized facts when required and yes, being tested … often when you least expect it. The printer breaking down before your first big presentation at work or comforting a sick child in the middle of the night, much like a pop quiz in Calculus, are just things that you really can’t prepare for.

Learning to live and adjust to being a husband, father, son and friend after my diagnosis of MS is one of those tests, although it sometimes feels more like detention and, unlike third grade, there is no countdown for that last day of school; my illness isn’t going away and there is no final bell that will ring to signify a new life, free of the chains of MS. But this story isn’t about that. It’s about how within those chains I discovered that class was, indeed, still in session.

COUNTING THE NOW

After I started my first professional job, it wasn’t long before I was pressing the fast-forward button again, imagining life in retirement: maybe traveling the country to see a game at every baseball stadium or just relaxing, with my wife, in a beach house somewhere.

I think striving for that future life is something common among many of us. The visions we have might be different, but the overriding theme is similar – surviving the now with the help of our utopian dreams guiding us through daily twists, turns, hills and valleys. And for many, this works … to a point. But I think something very important gets lost – enjoying, even relishing, today.

Instead, “the now” becomes the minutiae of our daily lives – it’s the necessary evil we begrudgingly accept, easily frustrated by challenges we believe to be bigger than they really are, worrying over things that may, but probably won’t happen. Looking back, I realize how many of those self-inflicted chains I created, all in the name of striving for that next level, where the proverbial grass would be greener and nirvana could be achieved.

NEW DAY’S RESOLUTION

 
Over the past few weeks my vision, already diminished in my right eye, has been flickering on and off and I’m left wondering if it’s a momentary setback or the start of yet another new normal. I don’t know if tomorrow I’ll still be able to see the beauty of my family, or even the words that I type at this computer.  Beneath this reality is a vital lesson taught everyday at the University of MS - there are no future guarantees.   

My Dad was right, you really do never stop going to school and through my continuous education I see the world from a new, improved, perspective. The math is different now and my countdowns have been upgraded – free of self-inflicted chains - to an ode for each new day, full of possibilities and wonder. 

Exercise, a Play in Two Lines

Laurie Clements Lambeth

Setting: Neurology exam room. The patient wears a hospital gown and is seated on the exam table. The doctor, seated on a low stool, faces her. 

Patient: I know exercise is important for people with multiple sclerosis, but ever since my MS has started progressing, I worry about overexertion. What do you recommend? Yoga? Water aerobics? Pilates? Kickboxing? Zumba?

Doctor: Yes.

Curtain

The actors emerge hand in hand for their bow; the patient loses balance, tugging slightly on the doctor’s arm. A fine job of acting, very realistic. Scattered applause.

The house lights go up. People quizzically look at one another. As theatergoers walk up the aisle’s incline, an usher hears the following:

“It’s art!”

“It’s rubbish!”

“It’s true.”  This comes from the last person climbing that incline, which feels to her like hiking the entire Appalachian Trail, bum leg dragging along as she hitches her hip in accommodation. Along the way she feels her abdominal muscles and hips work to propel her when other muscles refuse. She examines dust bunnies and abandoned programs twisted and rolled into new shapes, thinks of her own body’s twists and changes.

I don’t think I need to tell you that I am that woman in the audience and the patient on stage. 

Before my birth, my family had kind of a relationship with theater and disability. Days after my mother and father met each other acting in Tennessee Williams’ The Glass Menagerie at South Coast Repertory—she playing the limping Laura, he playing the Gentleman Caller—my mother had to go to court for a parking ticket she couldn’t afford. When her name was called, she was so nervous that she immediately went into character, limping slightly as she approached the judge’s bench.

“Were you in The Glass Menagerie last night?” the judge asked.

“Yes.”

“You were absolutely marvelous,” he said. And he dismissed the ticket.

When my mother approached the bench that day, she was unintentionally acting, driven to limp by fear, whereas today fibromyalgia and arthritis limit her mobility. She has given up the yoga she so enjoyed. Last year, understanding the way physical therapy (PT) helped me retrain my brain and legs to talk to one another, and how occupational therapy (OT) opened the channels of communication between my brain and left hand, she gave PT a try. Once she was assigned the right therapist, they worked wonders together. She still has pain, but has learned to take some strain off her knees.

A couple years ago my gait changed for about a year, left leg on strike. Then my left hand slackened. I couldn’t type or hold a piece of paper, money, a pill. Motivated more by my hand’s weakness than gait change, vacillating, too, between acceptance of disease progression and the desire to walk, I talked with my neurologist. In the past I have asked doctors about exercise options, with similar results as in my two-line play: Yes to a multiple-choice question. This time, with my physical abilities far more limited than before, I was sent to specialized PT. There, my therapist Meg astonished me with her creativity and compassion. She got me walking evenly again, helping me engage my core to hold myself up. In OT, I played with thera-putty and large clips and pegboards,  then fine motor work, screwing nuts onto bolts. It worked. Take a bow, Laurie.

Now I am realizing this has taken a turn for the theatrical.

Physical and occupational therapy don’t always form a straight arrow to recovery. As I grew stronger, the work got harder, and I pushed beyond my limits after 2 minutes on a treadmill. I slumped into a chair, eyes glazed. Meg brought me a cool washcloth, and I said, “Thwrank you. That’sshhhh wreealy nriyce. Feewrls good.” Hilarious to hear my own drunk-talk, but alarming, too. Meg suggested speech therapy, which followed.

Graduating from PT and OT was bittersweet. It was a safe, gentle form of exercise with a new friend who could help if I overtaxed my body. At a time of year when people resolve to exercise, I want to, but I fear my own boldness will harm me; in the fortnight between writing my first and second draft of this piece, I literally stepped back into my old gait. It’s time to inflate the balance ball, go back to those PT exercises that helped before. Time to try that adaptive yoga class Meg mentioned in her email months ago.

Laurie Clements Lambeth’s MS diagnosis at the age of seventeen brought her to poetry.  Her first book Veil and Burn (University of Illinois Press, 2008) was selected for the 2006 National Poetry Series. Currently at work on her second poetry collection and a book of creative nonfiction about MS, she also teaches in the Medicine and Society program at the University of Houston, where she earned MFA and PhD degrees in Creative Writing. To learn more about her work, please visit www.laurieclementslambeth.com.  

Keeping New Year’s Resolutions with Multiple Sclerosis

Julie Stachowiak, PhD
Writer, ms.about.com

We’re a couple of weeks into 2013 and I’m wondering how many of you made New Year’s resolutions. And I’m also wondering how many of you have kept them for these past couple of weeks.

In the past, I would make dramatic, sweeping resolutions that would be sure to transform me into a healthier, happier, stress-free person. December 31 would be the last day that I would indulge in any of the habits or vices that I was trying to eliminate from my life.

I would wake up on January 1 and within a couple of hours I would start to waver on something that I was supposed to do (exercise, meditate) or something I was not supposed to do (drink caffeine, eat sugar, lose my patience). Then I’d reassure myself that the first day of the year really didn’t count, as it was a holiday. Of course, the next couple of days didn’t require adherence to my plan, either, since the girls were home from school and we were still winding down from the holidays.

And so it went, with me finally getting to my “start day” around the 10^th of the month. When I would start to cave in on that day, I would tell myself that the time had passed to start something new and I would postpone my “official” start until February 1. Then I’d pretty much forget about it until the next New Year loomed ahead.

Last year, I decided to be more philosophical about things and try to figure out why things didn’t work out according to plan. I found that my inability to stick to my plan had more to do with the plan itself than with what was going on during any given day. It basically came down to the fact that my resolutions were unrealistic.

In the past, I resolved things like: exercise every day, learn French in a year, cook every meal for my family, completely eliminate sugar from my diet, keep my house organized and impeccable, and other similar all-or-nothing endeavors. When I failed once or twice to follow through and skipped a day of exercise or caved in and ordered takeout Thai food, I figured that I had blown it and I threw in the towel.

When I eventually actually thought about why I had “failed,” I realized that it is often a bumpy path to get through a day getting necessary stuff done. Emergencies large and small crop up. Even tiny things, like running out of an ingredient for a planned dinner, can derail things. Something like a sick child can kill anyone’s plans to accomplish anything during a day, as all is put aside to tend to that child’s needs.

Then there are the MS multiple sclerosis symptoms. Fatigue can annihilate any resolve to do something. Cognitive dysfunction can lead to things forgotten and schedules needing to be rearranged, mixed-up directions adding time onto scheduled activities. Sometimes, just functioning while feeling “addled” takes all the effort we can muster.

Looking back, I had a great 2012 in terms of making healthy changes and I am looking forward to feeling even better in 2013. My secret is a simple one: Strive for a little better every day. You may have heard me say it before, and it’s not an original thought. However, it helps me to focus on each healthy choice that I make each day, rather than focusing on all of the things that I didn’t get to. Congratulate yourself on the walk that you DID take, the new vegetarian meal you DID serve, and the quality time you DID spend with loved ones. Feel good about these things. Really.

When I do “slip up,” I try to let it go. If I ate dessert and I wished I hadn’t, I spend a little time thinking about what I could have done differently (tried a bite and stopped, substituted fruit, split it with my spouse) and I move on. I acknowledge what was nice about my slip up - it was delicious and a little fun. I try not to take that away by beating myself up.

My bottom line is this: I have MS. I do my best. I am trying to squeeze joy out of this life. I realized that if I spend my time scrutinizing my actions and criticizing myself for my slip ups, I look up and another year has passed, without much progress in feeling better physically, and certainly not emotionally. When I try to find the “good things” in life, it seems easier to make healthy choices and life just seems easier somehow. Try it and see for yourself. Happy New Year.

 

In the moment

Kelly Nieuwejaar
 
It’s important to me that I portray what’s real, but let’s face it, real can be a drag. There are some situations in life when we have a hard time and things don’t end with a double rainbow and a room full of puppies. But that’s everyone’s life, right? Everyone has his or her own “stuff.” Call it seasonal affective disorder or the blues or post-holiday let down, but I’m just depressed. And when I feel like this, MS is enemy number one. I guess it should be all the time … but at times like this it's really in my face, and I'm not even the one with MS!

My husband Khoren is rarely down. How can that be? It must be some sort of super power. Now that I think about it, all the people with MS that I’ve met possess this inner strength that confounds me. MS is obviously not something they're happy about; I get that. But they must know something I don't.

So, I went straight to the source for answers. Maybe some input from Khoren would help me get over my funk. I asked him how it was that nothing seems to get to him – particularly his MS. I waited anxiously for his sage advice. And, I waited. Finally, he broke the silence. “It's just my mindset. I don't have control over it, so I don't let it get me down.”

I wondered, “How can I purchase such a mindset?” It certainly doesn't come that easily to me. It kind of got me thinking about mindfulness and living in the moment, which is really how I think Khoren lives his life the way he does. This reminded me of a really wonderful book I own, Tao Te Ching. Every time I open it I feel more at peace with how things are and why things are. Maybe it could do the same for you?

Kelly Nieuwejaar lives in southern Maine with her husband, Khoren.