Wednesday, December 26, 2012

Wishing for normal

Michael Wentink 
Blogger, A Road Less Traveled... 

When you find out where someone went to college, the small talk that ensues is usually about one of its athletic teams, whether it was a good “party” school or perhaps if he or she chose it for its academics. For Virginia Tech alumni, the discussion usually includes a question about our school mascot: “So, what is a Hokie, anyway??”

I always had a difficult time explaining it. The more specific and detailed I was, the less success I had in answering the etymology behind the word, “Hokie,” and I’d usually be greeted with blank or confused stares. Eventually, I decided to go with the shorter—and catchier—explanation that a “Hokie” is a castrated turkey, or if I was in more polite company, a Hokie is just a really angry turkey.

(For the record, although our football stadium says, “Home of the Fighting Gobblers,” and our mascot certainly resembles the traditional Thanksgiving dinner, a Hokie has nothing to do with turkeys (or any animal). Here is a link to the actual legend behind the name, but be warned, it’s a bit underwhelming.)

In the months following my diagnosis of multiple sclerosis, I spent a lot of time reading books, researching and conferring with medical professionals about what MS is. I quickly learned there are no easy answers to the question, “What is MS?” Yes, there are concise clinical explanations, but I was stunned to learn that what isn’t known about MS far outweighs what is known.

“Why did I get it?” Not sure. “How did I get it?” Again, not sure. “What will my life be like in three years? 10? 30?” I asked my neurologist at the Mayo Clinic these questions and his answer was honest and straightforward: He had no idea. I could wake up the next day and be symptom free for the rest of my life, or in two years I could be in a wheelchair.

So how do I answer when I’m asked, “What is MS?” or “How is your MS?”  It’s actually surprisingly similar to my failed attempts at explaining what a Hokie is. The more details I give, the harder it is for me to communicate a clear answer. But, unlike the Hokie, there is no catchy explanation that gives justice to life with MS.  

Google "multiple sclerosis" and you’ll see what I mean. The list of symptoms range from muscle spasms to paralysis, not to mention it’s different for everyone. Some might have a little bit of this, others a lot of that. With so much individual variability of the disease and ambiguity of the how and why of MS, it’s difficult to find the right words to describe it.

To me, rattling off a list of ailments and the accompanying limitations really doesn’t strike at the true essence of my life with MS. I’ve learned to live with the constant pain and the tingling. Days are planned around my lack of energy and other physical limitations, and I give thanks for the vision I still have. But what does MS really mean to my life?

I’m frustrated that…
… I can’t start or end my day without a glass of water to wash down medication
… my feet are always cold although I’m in socks for most of the day  
… any light hurts my eyes
… sounds that shouldn’t irritate me, do

I miss…
… life before constant doctor appointments and medical treatment and tests
… being able to enjoy the sun
… running
… working
… warm feet

I worry what others think…
… when my wife stands while I sit in a crowded room
… when my wife is carrying the bags while I walk freely
… when I’m the “normal” looking Dad who isn’t out there, helping coach his kid’s little league team

I wish…
 … I never had to wonder about the day I tell my son and daughter I have MS, how old they will be, what I will say, how they will react
… I could walk into store and not be overcome with vertigo, fearful that others are looking, wondering what is wrong with me
… I didn’t get nausea looking through the chain-link fence at my son’s baseball games
… my child’s birthday party, or other social gatherings were occasions I looked forward to, rather than feared, wondering if I will have the energy, if there will be a lot of standing, whether I can handle what MS throws my way

That’s a snapshot of what my life with MS is like but really, I just want to feel normal again. Just give me 30 minutes. No tingling, numbness or pain. Clear vision, full energy and let me spend it with my wife and children; I want to know what that feels like. Just 30 minutes.

In 2008, Michael Wentink was diagnosed with multiple sclerosis. At 31, he was a new father, a recent MBA graduate and a Director at a Fortune 500 company. MS altered this path and after an early retirement, Michael is now navigating life on a road less traveled. A native of Northern Virginia, Michael currently resides in San Antonio, Texas with his wife and two young children. Read about his journey with multiple sclerosis at

Tuesday, December 18, 2012

I Fall Down and I Get Back Up

Kelly Nieuwejaar
Recently, while watching TV with my husband, he mentioned he’d had an appointment with his neurologist earlier that day. He then announced that he was the same or better. “Better.” That word seemed to echo off every wall in our house. And then I barraged him with questions at warp speed, of course.

How could my heart not leap at that? And then he said it: “It was just the time of day. You have good days and bad days.” Way to bring the house down, Khoren.

I feel that way about hope: Sometimes I have it and sometimes it starts to fade. Believe me, I think hope is powerful, so I try to hang on to it. But Khoren doesn’t really have hope at all. I say that because that’s what he tells me. I’m not criticizing him or feeling sorry for him. He simply doesn’t believe in it.

He’s tried various disease-modifying therapies, chemotherapy and acupuncture. But when I start reading about CCSVI and diets that are largely comprised of organ meat (ick) — options that some with MS say work for them — I become intrigued. I want him to consider them, but he doesn’t. He’s afraid of disappointment. This I know to be true. So to avoid that, he avoids hope. I don’t know if that’s good or bad. We talk about it and I see his perspective. I can’t imagine how I would be if I took his place. I get lost in thought.

I don’t know what we were watching at the time. But someone said, “I fall down and I get back up.” He looked at me and smiled, and said, “See? That’s what I do.” Maybe that’s enough.

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

Thursday, December 13, 2012


Laurie Clements Lambeth

Black Friday, Cyber Monday, the time between the holidays’ fuzzy, earmuffed, festive edges, these are the days when people with MS are cautioned to avoid overexertion and stress from all the festivities and their preparations. For me, these are the last few weeks of the semester, stressful, exhausting: the time when the rest of the semester catches up with my classes, all those readings, films and assignments I put off so we could spend more time with one book or film have nowhere else to go, and deadlines for letters of recommendation loom, not to mention the grading. I dare not think of the holidays. I plow forward, heart thumping on Nuvigil, eyes drooping, and I finally acknowledge fatigue.

I never quite understood MS fatigue. Like so many symptoms, it’s unquantifiable and subjective, eluding communication. My neurologist’s office used to send a form to patients to fill out before each appointment. I never ticked the box next to “fatigue,” because I imagined that it must be much worse than anything daily life throws at me. To be honest, I sometimes assume that if I feel fatigued, I must be lazy. Translation: If I claim fatigue, someone will think I am lazy. It’s only when I feel near collapse or sleep, my feet full of cement, mouth unable to form words, torso leaning to torpor (and hey, anyone interested in backing a Kickstarter project for a metal stand that encircles your body and keeps you upright?), that I stop and admit I am fatigued.

In one of my favorite poems by Marie Howe, “Pain,” she writes about her brother John, whose advanced AIDS is producing waves of pain, but not exactly the “big one” that would necessitate morphine. He says to her,

you know how we’ve been waiting for the big pain to come?
I think it’s here. I think this is it.
I think it’s been here all along.

These lines have been resonating quite a lot with me lately. “I think it’s been here all along.” In his pain he perceived something incredible that has taken me 26 years to realize: That fatigue has indeed been here all along. To me, this state, this tired body and mind, is the norm. Living with MS for my entire adult life, I have no point of reference to understand how life would be without it. Not many, after all, can say in their 30s or 40s that they feel the same way they did at 16.

I think it’s been here all along.

Shortly after my diagnosis, my mother built structures into my life, such as short naps every day after high school, until we figured that I didn’t always need them. I missed taking the SATs because of the swirl of the new diagnosis, fatigue, stress. With no disease-modifying therapy available in the late 1980s, I had a box full of vitamins and supplements. They didn’t make much difference to me and made me feel bloated and tired, but they were all I had—but all I had against what? Back then, people who had MS were turning to beesting therapy, grapeseed oil, and all kinds of diets to try to win the battle. But for me it wasn’t, and isn’t, a battle. If I hated MS, and MS is in my body, then I would hate something in my body with its blurry, numb edges, its droop and drag, its slackened strength, its brain lag, and I would, in essence, hate myself. I don’t want to fight that fight. Instead, I try to listen to my body for the moments MS tells me that I’ve had enough and need rest. My real battle was—and is—with the outside world, the expectations that might be placed on people like me whose lives are slowed by MS. I must fight the urge to try to live up to those expectations, and be aware that my path is a different one—no easy feat.

In college and graduate school I took fewer classes, for instance, and it took longer. I got extensions for projects, but poured myself into them. Nowadays, in my professional life, I am realizing that I need to slow down, too, and teach only one class per semester, because the workload and whirr of too many ideas that come with teaching different subjects to multiple people is overwhelming. I have no idea how people manage it. No idea, because it’s been here all along. I must tend to it. 

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

Monday, December 10, 2012

Keeping track

Susan Skoney

I need to vent before total exhaustion sends me to my recliner for a nap. Are you as tired of going to the doctor as I am? In fact, I could get sick thinking about it.

I spend days out of each month and hours out of those days going to different doctors trying to manage the myriad of symptoms multiple sclerosis brings. I have a neurologist, a urologist, a gynecologist, an ophthalmologist, a chiropractor, a dentist, a psychotherapist, a physical therapist, an infusion specialist and, of course, the obligatory primary care physician.

One would assume that with 11 healthcare providers my medical care would be the least of my worries. Actually, it is one of my biggest sources of anxiety. And that’s because I don’t really know which of these providers is overseeing my care. OK, I’ll give my dentist a pass. But a few days ago I arrived at the lab to have blood drawn with two scripts in my hand—one from my primary care physician, and the other from my neurologist. The tech laughed out loud and explained she would have to draw at least 20 tubes, which was way over the limit for one patient for one day. The stricken look on my face must have touched her on some level. Tears welled in my eyes, and  rather than dismissing me, the tech called me back to her office, identified all the duplicate tests  and managed to reduce the number of tubes to a manageable amount. She assured me the results would be sent to both providers, then shook her head and said, “If only they would talk to each other.”

Communication is definitely an important concept when trying to manage your health care under normal circumstances, but for those of us with chronic problems it is vital. I have discovered that peripheral providers, like the lab techs or a pharmacist can be great facilitators of that elusive communication. My pharmacist is like a guard dog. He has picked up on possibly serious drug interactions that could happen by having so many doctors prescribing different drugs. Recently, the urologist prescribed a drug and my pharmacist would not fill it because of my allergy to sulfa. (A component of this particular medication was triggering allergic reactions in people sensitive to sulfa.) Well, I was so relieved my pharmacist was on the case! 

I don’t know about you, but I’m exhausted trying to keep it all straight. In the end, I’m the one who is really in charge of my medical treatment, I guess. In the meantime I’m headed to the recliner. I have an appointment in an hour.

Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and children Hannah and Alex. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

Tuesday, December 4, 2012

Don't run away

Douglas Winslow Cooper 

“Don’t run away,” she said to me. She pierced my heart.

That night, I had stopped in at my wife’s bedroom to see how she was. Quadriplegic and ventilator-dependent, Tina Su Cooper has outlived medical expectations, thank God. We are still very much in love after 28 years of marriage, another blessing. When I am at home and awake, I check on her almost hourly. Often she is asleep, unaware that I had looked in.

That night, she was seemingly engrossed in a romantic movie, I was pleased to note. Commercials began. I asked her how she was doing, gave her a quick update on myself. We restated our love for each other. Commercial break over, the movie restarted, and I headed out of the bedroom.

“Don’t run away,” Tina said.

“I’m not running away. Your movie is back on. I’ve got things to do.”

“What things?”

“Among others, finishing the payroll receipts and checks for the nurses.”

I could have added that I wanted to catch up on some email correspondence and to read more of Stephen King’s On Writing, which I had just begun.

This conversation between the cared-for and the care-giver is like many others of a similar pattern: the request, the refusal, the questioning with its implied accusation, the defense with its underlying guilt. Both sides have merit. Both have legitimate needs or desires. Each cares about the other. Neither wants to be a burden or to feel burdened.

I sat back down beside her. We spent a few more minutes together. When her eyes wandered back to the movie on the TV screen, I knew I could go without disappointing her, and so I did. The next morning, I still felt a bit guilty that she had to ask me to stay longer. I don’t want her to have to ask. She doesn’t want to have to ask, either. That’s just the situation we find ourselves in.

Our brief interaction is a microcosm of a distressing phenomenon: well spouses deserting their disabled mates. I wrote about such a desertion in my memoir, Ting and I.  Perhaps there are “two sides to every story.” Perhaps the departing spouse has a defensible position. Leaving certainly seems to violate the wedding promise of staying together “in sickness and in health.”

Where is one running to? Can one be proud of having left? Can one outrun the memory of someone abandoned?

Tina cannot run away … and I will not.

Douglas Winslow Cooper, Ph.D., a retired environmental physicist, lives in southern New York State with his beloved wife, Tina Su Cooper, a former editor at the Encyclopedia Britannica and mother of two. Tina was first diagnosed with MS in 1981 at the age of 37, and she has been quadriplegic and ventilator-dependent at home for almost eight years. Tina is the central figure in Dr. Cooper’s book, Ting and I: A Memoir of Love, Courage, and Devotion, available from Amazon. Barnes and Noble, or their website,