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
