Trevor Wicken

Patience, Perspective, Perseverance

By Yulia Steshenko

What should you know about me? I come from a long line of unsmiling—eh, stoic?–laborers from the Far East and Southeast Asia: farmers, a beekeeper, even some accountants–those count, right? They do monotonous work year after year, with few highs and many lows. That should have prepared me for something more than Calculus. 

When my supervisor compared my help during a summer internship to my doing a yeoman’s job, I couldn’t help but feel understood. He got me. My people are a patient lot, equipped for consistent, methodical work. 

So perhaps it’s no surprise that I am in my happy place doing my core program and at least three companion guides each day, week in and week out, since first finding the MS Gym May of 2018. Give me an endless task: I’m on it! I can outdo that Sisyphus in boulder pushing any day.

Well, not quite. Despite my resolute roots, I get impatient like anyone else. I see the successes others are having and wonder, why haven’t I achieved that yet? Aren’t I devoted enough to my exercises? Aren’t I attentive enough to my form? Why can’t my hip flexor do that yet? Is that even physically possible? 

Last summer, I thought I could hasten the healing process and do two cores a day and then wondered, why am I so tired? Why do I feel an overwhelming need to nap when I’m not a napper by nature? Jodi Feltham set me straight on that: Don’t overwhelm the brain. Stick to one core a day. 

Late autumn, I thought, let’s take advantage of the fact I have limited sensation in my limbs! I can do stretches even if I have a hunch I’m probably going too far too quickly and not hearing the shriek of my muscles. I’m not in pain: I’ve got this! Not so much. An overeager cheerleader stretch I saw in a Movement Detox produced black and blue bruises all over my weak leg, along my adductors and hamstring. When it began throbbing and I became feverish and new bruises cropped up without any additional exertion, I found myself in the ER. 

It took me two months to recover from that bout of overeager stretching, during which time I could hardly sit up or stand on my own or answer the door, all things I had begun to take for granted in the past several years, as I got stronger. OK, I’m still technically recovering, but the mishap reinforced a lesson I needed as I saw others zoom ahead of me in their core programs. There are no quick fixes as we rebuild our bodies. In a world of on-demand and of same-day delivery, there is no instant gratification in managing MS. There is just the deep confidence in knowing we have the tools to improve and are on the right track if we trust the process. 

This sounds cliché even to me, and I believe in the program. You know what keeps me patient when I experience a setback, whether induced by stupidity, impatience or the mysterious workings of my immune system? I think back on all I’ve gone through since I got MS and it gives me a great sense of calm. What? What am I talking about? 

Well, aside from being the progeny of peasants, I have a long history with MS. I’m 37 now, but have had MS for at least 23 years, when I had my first major attack and the right side of my body went kaput. So I can look back on all that history and see how long it took me to make the progress I am benefitting from now. 

It took me over fourteen years from this first major MS episode to realize I couldn’t just ignore my body. (I was a person of the mind, wasn’t I? What did I need to worry about my body’s not working?) It took me another nine years before finding a workout routine that helped me systematically get stronger instead of just draining my energy for the day (yup, the MS Gym). Before then, it was just trial and a lot of error. 

I started getting daily bladder accidents at age fifteen. It took another fifteen years to wean myself off the largest pads available and trust myself enough not to have accidents. I’m still working on strengthening my pelvic floor, so I can walk further without worrying about having an accident (still a concern, as now I don’t have a pad to absorb what leaks may come and am showing my backside more by venturing to walk outdoors), but if I can put up with navigating high school, college and the dating world in a mega-pad and the unmistakable stench of urine, I can do this. 

It took me thirteen years to leave my block on my own after I started using a wheelchair at the age of 23. It was only earlier last year that I began to be able to open doors on my own and propel myself up over door thresholds and up most curb cuts. So last summer, when I found myself again stuck in my living room, dreading even going into my bedroom or the bathroom due to the oppressive humidity, others had no idea my life had become so circumscribed again: I was too immersed in my workouts and making friends in the MOC to get cabin fever. And my newfound freedom was waiting for me when the humidity ended. 

It took me seventeen years to get off antidepressants. Even if I get into a dark mood some evenings or experience a panic attack, as my partner and close friends know, I can make it through to the other side and don’t worry any longer about being a burden on society, my default fear all those years prior to joining the MOC. 

It took me six disease modifying therapies and almost two decades to find a DMT that stopped my getting relapses that affected my gait (my eyes are another story). Some would say they’d failed these prior medications. I’d like to think I traded up each time (no offense, Avonex). I might still get such relapses in the future, but I have the tools now to reduce inflammation and repair my gait through movement meds (woot!) and no longer even think of myself as having a progressive condition, though I had an aggressive form of SPMS for two decades. 

Should you worry about its taking decades to retrain your brain, rebuild your muscles and heal from your struggles, just remember that the tools available to us now are so much better than existed a decade or two ago—and are constantly being refined: I’m not sure I can thank Trevor enough on this. It’s a new day for neuroplasticity. (Does anyone else have U2 in their head?)

I still slip up and my impatience shows.  I still catch myself frustrated with my body sometimes, especially when I see others making progress in leaps and bounds. But I remind myself that none of us are battling the same lesions, disease history, or circumstances. And I reflect on everything I’ve been through and remember I should feel proud I’m working to repair such old damage. Just a few years ago, I was preparing to use a wheelchair full-time. I didn’t even think it was possible to halt the progression of my disability, much less reverse the disability I’d had for so long. As I’ve told others, everything from here is a bonus: Bonus steps! Bonus muscles! Bonus milestones! 

Wait, am I allowed to be this excited? Or am I meant to be dour, like my ancestors (um, my parents)? 

What goals of yours are worth your patience and perseverance? How can you use your perspective on past challenges to your advantage?

The RULES

By Marissa Mandell

“You have the brain of an eighty-seven-year old!” my neurologist blurted out to me over the phone. I burst into tears, wondering if this was my doctor’s way of getting back at me for disturbing him in the middle of his busy workday. He was trying to scare me just to get me off of his back, I concluded. Had I only waited patiently for my scheduled follow-up appointment next month, he wouldn’t have felt compelled to shock me like that.

I took in a deep breath, reflecting on all of the past occurrences that lead me to this frightening moment. I remembered how at a pool party this past summer, one of the guests had asked me why I was limping.  Her question had surprised me, because as far as I could tell I was walking just fine. Over the next couple of months, however, I started to become aware that I indeed had developed a limp, and that it was growing progressively worse.

At that point I didn’t worry too much about it. I have a genetic condition that makes my ligaments overly lax, and walking has always been an issue for me. In fact, I was nearly three when I took my first steps. As I grew, I became stronger and my walking improved, although I certainly had to limit my choices of physical activities. For example, when I was five, I twisted my knee within the first few seconds of going on my first (and last) trampoline, and skiing was always out of the question for me.  Still, for the most part, I remember always being able to walk as much as was necessary. In recent months, however, my walking began a steady decline that sent me into a downward spiral. The less I was able to walk, the more weight I gained, but the more weight I gained the less my overly lax ligaments seemed to be able to support me.  I had already packed on thirty-five extra pounds of weight from my recent lack of physical activity, and my husband and I remained convinced that taking the weight off of my unstable joints was all that I needed to do to restore my walking. So, I joined a weight loss center and slowly and painstakingly lost the extra weight I had accrued. In the end, I looked great, but my walking showed no signs of improvement.

At that point, I made an appointment with a local neurologist, who ordered an MRI of my lower spine to see if I had a slipped disc. I was relieved when he told me that my MRI looked great, that didn’t have a slipped disc, and that I definitely did not have MS (whatever that was).  He could not explain to me why I was finding myself unable stand for long periods of time, or why I was losing my balance and falling a lot. So, I set up an appointment at the university hospital an hour away with a neurologist who specialized in movement disorders. Dr. J. was very methodical and thorough in his approach.  As part of his workup he arranged several consults for me with a variety of other specialists in the university system, including a rheumatologist and a geneticist, as well as a series of MRIs. I was confused as to why he would order additional MRIs when my original neurologist had already given me one, but I complied with all of my new doctor’s orders. It caught me off guard when the technician at the imaging center seemed very sympathetic towards me, offering me a blanket as if something was really wrong with me.           “I’m fine,” I told him, feeling guilty for receiving any special treatment, when all of the other patients I had seen in the waiting room seemed like they were truly dealing with serious diseases, unlike me. I did find it odd that this MRI took over two agonizing hours and even required an injection of contrast media. It was nothing like my first MRI, which was over in about thirty minutes.

Dr. J was supposed to talk to me about my MRI results to me at a follow up appointment that was a couple of months away. At first, I didn’t mind waiting even though the limp in my right leg continued to worsen.  However, after a few more weeks had passed my right hand started to feel numb and tingly, and I panicked. It took a good half of the day enduring the university hospital’s labyrinth of receptionists and voicemail messages, patiently waiting on hold and assertively insisting I needed to speak one on one with my physician got before I could finally get through to my neurologist. Desperate times called for desperate measures, and I would have happily walked on a bed of hot coals to reach the man.

Dr. J absolutely floored me with his shocking declaration.

“What did you mean I have the brain of an eighty-seven-year old?” I entreated, in a complete state of terror.

“Your MRI very strongly shows that you have MS,” he uttered, flatly.

I had heard of MS before, but I didn’t know much about it. I remembered learning about the chronic degenerative disease in pharmacy school one decade and a half ago. We were taught about the two, or maybe three medications with very complicated sounding names that were supposed to treat but not cure MS. I did know that it was a very bad thing, and that Jacqueline du Préand Annette Funicello died from it.

“What am I supposed to do now?” I lamented.

Dr. J let out an exasperated sigh over the phone.

“Well, there’s no sense now coming to see me for your follow up appointment—I’ve already told you everything I can, and MS is not my area of expertise,” he maintained. “You’re going to have to see Dr. R, the head of the MS department at the university. He’s booked up at least six months, though.”

“I can’t wait that long,” I blurted, terrified that If I waited any longer, I’d lose my hand.

Dr. J cleared his throat. “Well, you’re very lucky,” he declared. I sure didn’t feel lucky, but I let him continue. “Dr. R comes out to my clinic one day a month, and tomorrow happens to the day that he comes to our satellite office. If you agree to allow his nurse practitioner to be your primary clinician, I can squeeze you in with her. The doctor only needs to be present with her on your first appointment.”

I took Dr. J’s offer without any hesitation.

I went to the clinic for my consultation the next day. Everything seemed surreal and I felt like I was in a daze as my newly assigned nurse practitioner had me perform a series of tests doing bizarre things like continuously flapping one of my hands back and forth against the other. She scrutinized me, taking careful notes as I walked across the room for her. She directed me to follow her finger with my eyes, and frowned as she exchanged a knowing glance with Dr. R. Something was really wrong. What were they seeing? Was I going to be going blind in the future?

The nurse practitioner motioned me over to a chair across from the doctor.

“So, I’ll have to be honest with you. People with MS have a lifespan that is typically seven years shorter than average,” the Dr. R told me bluntly, a broad smile incongruously plastered on his face. I couldn’t determine if he was attempting to make me feel better by acting cheerfully, or if he was getting some type of sadistic pleasure watching me break down into tears.

“But not to worry,” he continued. “We’ll get you on a medication, and you’re going to be just fine! Many people with MS don’t even end up needing a wheelchair!”

Of course, I cared about being able to walk. However, in the scheme of everything I could lose, I found myself instinctively honing in on the only appendage I couldn’t live without. I was terrified of losing the one thing in my life that gave me a sense of confidence and purpose and had given me the strength to pull myself out of a crippling major depressive episode I suffered one year before I started to develop my limp. In the aftermath of this depression I lost countless friends, and was judged badly by my husband’s family. However, as I rebuilt my life little by little, I recreated myself as a bass player in a band with my husband. I studied classical guitar years ago, but put it away when I began pharmacy school and shut music out of my life for over a decade.  After enduring many grueling years of study and long work hours, my husband’s and my lives were just beginning to fun again, and I was determined not to give it up now. Sitting there in this sterile office completely at the mercy of these authoritative and condescending healthcare practitioners, my only recourse was to grasp onto my bass guitar as if it were a lifeboat keeping me afloat in the tidal wave of fear that was welling up inside.

“I don’t care about my legs. I don’t care if I can walk or not. I just can’t lose my hand. You can let my legs go, just do everything you can to make sure I keep my hands,” I pleaded.

Dr. R leaned back in his chair and chuckled.

“I have to say, in my thirty years of practice you are the first patient who has ever said that to me,” he declared, shaking his head back and forth.  “Don’t worry. You’re going to be just fine,” he asserted half-heartedly.

Getting diagnosed with MS was a baptism by fire that introduced me to The Rules—the unspoken laws about what I should expect and how I was to be treated by the medical community. These were the unbreakable laws that dictated how things were supposed to be in this strange new world of chronic and incurable diseases.

The Rules

You must listen to your doctor without question

You must live your life by your diagnosis

Not by your hopes and dreams

Give it up

Aren’t you tired already?

There’s absolutely nothing you can do

So why bother?

 At first, I refused to accept The Rules. I believed in my heart that there had to be things that I could do to get better. So, I spent months reading every book I could find about various protocols that were supposed to heal my MS. They all required a lot of discipline, but I was willing to do whatever it took. Some regimens kind of worked, sort of. Some things did nothing at all for me at all.

During those first few months after diagnosis, I quickly learned that I had to be very careful within the MS community, because I often found myself offending people if I ever mentioned a medication they weren’t taking or a diet they weren’t following. I began to realize that everyone had their own way of managing their MS, and it wasn’t a comfortable thing to hear that maybe there was a better way. Everyone needed their own personal raft to cling to so as not to drown in the horrible ocean that was The Rules. I observed that within the MS community subgroups rallied around certain physicians or medications or treatments or protocols. It’s a wonderful thing to have choices, but having so many options somehow seemed to cause division within the MS community.To paraphrase the Rolling Stones, “He can’t be a man ‘cause he doesn’t take the same DMT as me!”

I found it difficult to make sense of the large variety of lifestyle protocols that were currently available in the bookstores and on the internet, because each one contradicted the next. So, I chose one path and stuck with it. I followed my protocol of choice dutifully for two years. Even so, my walking continued to decline, and by the end of the two years I was depending on three walking assist devices at the same time. I found myself becoming very lonely as well. I gave up going out with friends who wanted to do things I could no longer do, like walk on the beach, or walk around the mall. The local MS support group that met once a month depressed me because all of the members seemed like they had given up on life. After two years of working alone and unsuccessfully on my MS protocol of choice and growing increasingly isolated from friends and the activities I used to enjoy, The Rules were wearing away at me. I was tired. I was hopeless. The Rules were right. It was time for me to stop trying.

I hit rock bottom when my husband tried encouraging me to fly with him and the kids to Italy to see my exchange family, whom I hadn’t seen in thirty years.

“You don’t know how much longer your exchange parents have,” he reminded me.

The thought of trekking across airports and managing the cobble stone streets and allowing my family see me in my current state seemed both humiliating and torturous.

“We’re going to see each other again in heaven anyway, so what’s the difference?” I retorted, as I turned on my laptop to check my Facebook page.

I’m not exactly sure what gave me the impulse open my Facebook groups file and go to the MS Gym. I had joined as a free gym member months ago, but I had completely forgotten about it. Perhaps it was divine intervention that spurred me to go to the site again, or maybe subconsciously I remembered that I had one more option to explore before I gave up completely.  Either way, it was a life changing decision for me.

There was this guy there that posted motivational speeches and exercises for healing MS. I was pleasantly surprised to hear him say that people with MS were the bravest people he knew. Up to then, all I ever got from other people since my diagnosis was pity, not admiration. This person surprised me again when he said, “I love you guys.”

“No one loves us,” I thought. “People are repelled by us. My neighbor’s kid was even scared that he was going to catch MS from me.” Still, this man’s eyes shone with kindness, and the determined expression on his face testified to his sincerity. He actually meant what he said, and I was blown away.

I watched this man demonstrate an exercise from a wheelie walker. I had one, but I left it in my garage, because I was too embarrassed to use it. However, the way he swung around on it confidently, like a rock star, made it look so cool. In addition to his kindness, this guy had an air of rebellion about him. He was the first person I had ever seen who was willing to defy The Rules. As I explored the site it became obvious to me that he was backed by an entire team of like-minded people who wanted to defy The Rules along with him. So, I decided to join the MS Gym as a member and join in the fight.

Within the next couple of months after instating my subscription to the Member’s Only Corner, I opted to use my wheelie walker over my cane, HFAD, and Walk-Aid because it gave me the proper posture that I had learned from my new exercises. I purchased trekking poles and became proficient at using them as well. I didn’t feel ashamed anymore. I felt brave. I decided to go with my family to Italy after all. Life was starting to feel hopeful again.

Not long after making all of these positive changes, I received a surprise in the mail. It was a list of the MS Gym Warrior Rules. I had been more than happy to replace The Rules with the MS Gym Warrior Rules. The Rules discouraged me and crushed my dreams. But the MS Gym Warrior Rules encouraged me and allowed me to believe that anything is possible. What a special gift is was for me to have it all in writing now. I framed my MS Gym Warrior Rules, and I make sure to read them to myself every day.

The MS GYM

I Am An MS GYM WARRIOR

I Live Life By Design

Not by diagnosis

I Love and Support

My MS GYM Family

I Know Doing Something

Is Better Than Doing Nothing

 RISE MOVE  HEAL

#BGB

 

 

 

 

By YULIA STESHENKO

Deconstructing Freedom

At the Live Your Life Summit, Misty asked us to not just have goals to strive for, but a vision for our future. Goals are finite and discrete. A vision can carry us through the uncertainty of our health conditions, beyond specific milestones, and offer meaning in the midst of struggles and setbacks.

I did not have a vision going into the Summit, but the word that came to mind as she spoke was “freedom.” (I thought this with a devilish glint in my eyes, as if it were a prison break I planned.) I didn’t know what I meant by this, but I’d have time to reflect and figure it out.

So here I am, two months after Summit, trying to understand what freedom looks like to me.

At first, I thought freedom meant walking as I did before MS. As I wrote in a MOC post about what I would do if I were not afraid of failure, what came to mind was being able to walk without fear of running out of energy or fear of needing a restroom I could not reach in time.

But afterward, it struck me that I can live quite well even with a rollator or even if it is obvious that there is something not quite right about my body. I am still free without looking as if I have been untouched by twenty-four years of MS. I do not have to be able to hide my MS to be free.

And freedom for me does not mean never using a wheelchair. I can live with this, too. I feel quite free, in fact, racing down hilly sidewalks, making my aide chase after me. Or even struggling up a curb cut and letting myself be assisted by a parent passing by with a stroller or a waiter who sees me in need. I do not mind accepting help when I have decided I want it.

I remember, one New Year’s Eve a decade ago, another guest, unaware of my disability, said emphatically she would not want to live if she needed a wheelchair. I thought, “You’d be surprised. There’s more to life than freedom from a wheelchair.” I wasn’t about to point this out to her, however, that life goes on and we find meaning nonetheless.

At another point, I thought freedom is being able to go out on my own, without someone to accompany me and ensure I am safe. But then I thought of my partner, who lets me decide where I wish to go and stands back as I propel myself, only stepping in when I am about to fly into a car or off a curb. I can live with this without feeling I am babysat. (Besides, I am not eager to have any more dental surgery.)

So none of these markers of freedom mean as much to me as I initially thought. Then what does freedom mean to me?

When I started volunteering for the local Center for Independence of the Disabled, offering financial planning support to others with disabilities, I couldn’t help wondering if I were a fraud. How could I offer advice to others when I relied on assistance of my own to get by—whether from my family, my partner or the federal and local government, which provided me disability income and health insurance, among other benefits? Wasn’t my independence a sham? I looked up the agency’s own interpretation and was relieved to see it conceived of independence not as complete self-sufficiency, or freedom from needing assistance or accommodations, but as the freedom to direct one’s own life and live on one’s own terms as much as possible. (I cannot find the specific quote, so I am paraphrasing here.)

OK, I met those standards of independence. I was not, in fact, an imposter. Phew.

Then, I thought of the other ways I had found freedom from beliefs and states of mind that had held me back.

Freedom from the guilt I carried for over a decade that I did not manage life after college as well as I “ought” to have, considering the tools I had available to me, including my education and support from my family.

Freedom from the shame that I was not the person others took for granted I could be.

Freedom from the fear I was a burden or inconvenience to others.

Freedom from a learned helplessness that kept me more cloistered and dependent than was demanded by my physical abilities.

Freedom from the isolation of not having others to connect with in meaningful ways.

It didn’t occur to me at the Summit, as I imagined a way of life just out of reach, but I already had this freedom, thanks to the MS Gym.

It enabled me to go off antidepressants after joining the MOC (yes, with careful tapering and the go-ahead from my therapist). And it enables me to strive for more visible, physical freedoms –to undo the asymmetry in my gait and walk for longer distances and strengthen my pelvic floor, and on and on.

I still strive to walk that mile that I don’t need to walk in order to be a fully deserving and contributing member of society. But I pursue it, knowing that it is a bonus to all the ways I’ve been freed already.

What does freedom look like to you? What freedoms do you have, as you are?

By YULIA STESHENKO

 

( if reading on MOBILE device , click on the title to read the entire article)

 

Fellow MS Gymmer Tracy P. posted something in the Members Only Community which has stayed with me. She wrote, “My favorite thing about the MOC is that I am just Tracy. Not Tracy with MS. Thank you for just letting me be me!”

And I knew exactly what she meant. I have never felt freer to be myself than I do in the MS Gym community. And I don’t take this for granted.

I used to think I didn’t need to know others with physical challenges, much less immerse myself in a community of others with MS. I knew MS all too well on my own, having gotten my first major episode at fourteen, a full 23 years ago.

Back in college, I even shared with a magazine on diversity that I had no interest in joining a group for students with disabilities, as the point of college was to meet people different from myself. Yes, this is on record somewhere.

I thought, what could I learn from others about the humiliation of my body’s limitations or the frustration of fatigue or the sorrow of being left out. These experiences took up too much of my life already. Wasn’t college about expanding our world view and connecting with those who are different from us?

Reinforcing my view was my experience in support groups for those with MS, first at a local hospital and then through the MS Society, where I joined a conference call once a week for those homebound with MS. I remember more than anything the trauma of these experiences.

A woman spoke of how she had to leave her job as a college professor because her mind no longer worked as well as it once had. (I had wanted to pursue academia, so her story spoke to the limits of my own dreams.)

The moderator of an MS support group for those who were homebound compared my living situation in my 20s to a group home because my partner at the time also struggled with a chronic condition. (I’d thought it was a relationship all those years. Who knew?)

And a husband spoke for his wife, who has MS, as if she could not speak for herself about her experiences, though she was there beside him. (I never did hear her voice in all the sessions I attended.)

I thought, I don’t need this in my life. We were all in a sinking ship together and it didn’t make me feel less alone. If anything, it made me feel claustrophobic.

I needed people who brought out the best in me, who made me feel I am not my diagnosis. So it took me years to understand I could find this in a group made up of others with MS and other neurological conditions. It took me years to embrace my identity as someone with a disability because I lived in fear it would consume my entire sense of self.

Yet, as Tracy suggested in her post, a weird thing happens when you find a community who understands what you are going through: You learn you can be yourself. You learn you are enough as you are and that MS does not define you. You learn you needn’t feel alone or be ashamed of your experiences. You learn a diagnosis is not the end of your story. You learn to test your assumptions of what you are capable of. You see you have a choice in how to live your life.

One of the great joys of the MOC is how it has enabled us to give voice to our experiences and find our voices as individuals. Above all, I think of it as a storytelling group. I love learning others’ stories, both their experiences with MS and their experiences unrelated to this. To see a person shed the veil of their diagnosis and share their quirks and passions, whether it is painting or music or cooking or being a parent, whether they approach life as a poet, humorist or scientist running studies on themselves and reporting the outcomes.

I received a card earlier this month from my dear friend Ashley, in which she wrote:

‘Today you are You,

that is truer than true!

There is no one alive who is You-er than You!’

Dr. Seuss joins me in wishing you your you-est year yet!

With much love, Me

May you become more YOU in the year ahead, whatever that entails. May you discover who you are with MS and beyond MS.

If I may go from one children’s author to another, I leave you with this question posed by Lewis Carroll’s hookah-smoking Caterpillar to Alice: “Who are you?”