My MS Story Continued.
 

I am a Multiple Sclerosis Legacy so to speak, born into a family with an aunt, by marriage, and the younger of her two daughters, my first cousin who had been diagnosed with MS in the 1940’s and 1960’s respectively. My Aunt and Cousin were diagnosed at times when there was very little traditional medicine could offer patients and little known about the disease. Multiple Sclerosis is a chronic, often disabling disease of the Central Nervous System (CNS) caused by damage to the myelin that surrounds and insulates the nerve fibers of the Central Nervous System (CNS).  This damage to the myelin can happen anywhere in a person’s CNS that includes the  brain, spinal cord and optic nerves, and it disrupts the ability of the damaged parts of the CNS to communicate, resulting in a host of symptoms including: numbness, weakness, blindness, difficulty with balance to name a few.  The complexities of this disease are further mired by the facts that much of the disease process is invisible, and that the course of this disease is unpredictable with periods of relapses and remissions. In recent years there has been a growing appreciation of the Mental Health symptoms caused by MS, and it is the Mental Health impact of MS that is the focus of My MSage. There are an estimated 400,000 people in the US diagnosed with MS, and 2.3 million globally. Symptoms often present in early adulthood between the ages of 20-40, with two, nearly three times more women diagnosed than men. In recent years there has been progress in understanding the underlying disease process, and in treating symptoms, still there is no known cause, nor is there a cure.  I witnessed the impact that MS had on my Uncle’s family and on my entire close knit extended family.  I watched as physical disabilities progressed, but always sensed that the invisible aspects of MS wreaked the most havoc on all of them. I recall hearing comments about my Aunt and Cousin’s moods, their sadness and bitterness.  I do not recall ever seeing my Aunt stand or step out of her wheelchair, and my Cousin’s MS was very aggressive and she became physically disabled very young and early in her life. The Mental Health struggles that both my Aunt and Cousin endured were never fully appreciated, and they both suffered greatly as did each member of their family.  Growing up I had a very frightening view of this esoteric and unpredictable disease thinking that not only could it cripple you, it could make you  sad and bitter.  MS has always been in the backdrop of my life and for as long as I can remember I have tried to keep abreast of information regarding this disease. Perhaps the pursuit to know about MS was an effort to quell my own fears, nevertheless the only two concrete and consistent facts I seem to have always known about MS is that the cause is unknown, and there is no cure. On January 22, 1996, when Neurologist John E. Robinton told me that he thought that I had MS I was alone, standing barefoot in a flimsy patient  gown, in a dimly lit freezing cold exam room.  I had just celebrated my 32nd birthday, been married for four months, and begun to grow my own family by adopting a German Shepard puppy that we named Sage.  I remember shivering, actually trembling uncontrollably in a way that I had never before and have never since!  The doctor began explaining differential diagnosis and then started to draw the central nervous system on the torn tissue paper covering the exam table.  He was talking but I could not comprehend anything that he said after I heard:  “Looks like a duck, quacks like a duck….Stephanie I think that you have Multiple Sclerosis”…yes the doctor actually said the duck thing!  It is amazing what you remember, trauma can do that to you.  That precise moment, that trauma quite literally altered the course of my life, and cast the dye for my journey living with MS.  I left Robinton’s office with my head spinning, in total utter shock watching all of my dreams and aspirations disappear into thin air.  It was literally as if I received a blow to the head and suffered a traumatic brain injury.  I was petrified, stupefied, and profoundly traumatized.  Driving home on the Garden State Parkway, alone with thoughts short circuiting in my mind, wondering how I was going to tell my husband of four months…hearing those vows I had so recently uttered…“In sickness and in health.”  Thoughts were whirling in my mind, how I would tell my parents, in-laws, siblings.  I have a clear recollection of hearing myself say out loud, “Stephanie, if you close your eyes and let go of the steering wheel this does not have to happen, you can end it right now.” That drive home was the first and only time in my life that I have ever contemplated suicide, and so began my dance with PTDD.

I quickly learned that once you have the diagnosis, the trauma just keeps coming as it did in my case the  following day when at the urging of my Uncle, I called his daughter, my cousin with MS to discuss my diagnosis.  I was dumbfounded and again traumatized when she greeted me with, “You know Stephanie, all these years they blamed my mother!” Once handed my diagnosis I was at a total loss, it was impossible for me to wrap my head around and I quickly learned that every person has their own ideas and reactions to and about MY MS diagnosis and that often times those reactions were hurtful and traumatic as well. For some of us the diagnosis came after a long an arduous process, as symptoms relapse and remit, or mimic other suspects.  For others the diagnosis came from an Emergency Room resident, an eye doctor, the internet.  No matter how you are diagnosed with Multiple Sclerosis, I have come to understand that there is significant trauma associated with this event.   In the 22 years that I have lived with My MS diagnosis, it has been my experience that the Mental Health aspects of MS, specifically depression, anxiety, increased risk of suicide, and what I call PTDD have not been given the time or attention required.  Over time research has exposed the profound psychological impact MS has related to cognition, emotional regulation, anxiety, depression and other mood disturbances. We have also learned over time that many medications used in treating MS come with side effects that include depression and suicidal ideation making treatment complicated for this vulnerable population. I believe that it is imperative to meet the psychological needs of MS patients from the get go. MS is an esoteric disease that affects each of us differently. I have pursued many avenues to improved health, and have found that a holistic approach to my self-care has fostered many means of improved wellbeing.    

I bring to My MSage my professional experiences as a Hospital Administrator, who has navigated the patient side of this disease for over two decades.  We are inundated with print, TV, and social media ads for new MS drugs, by news reports on promising research and studies, new therapies, new theories, the list could go on.  As a community we fund raise enormous amounts of money while MS Societies, Associations, Practices, Consortiums grow very large and extremely busy.  I have watched the establishment and growth of many International MS groups, and how the internet has provided a place where we can gather information, share, and connect. Multiple Sclerosis is a huge industry with substantial financial stakes and consequences.  I have been disappointed time and time again when physicians rush patients to begin very expensive disease modifying therapies while many of those newly diagnosed are in shock, traumatized, ill prepared to give informed consent and acutely in need of Mental Health support first and foremost.   In addition to the psychological trauma of the diagnosis, patients quickly learn that there are profound financial burdens that come with this diagnosis.  MS is a chronic disease and an expensive disease to manage over one’s lifetime, and for many treatment s are prohibitively expensive, even with insurance, let alone underinsured, or uninsured. The financial stress alone can be monumental and have profound impacts on a person’s wellbeing by causing additional anxiety, and limiting one’s ability to access and or pay for medical, mental health, and supportive services. Throughout the years I have spoken with many MS patients and have come to realize that there is a profound need for us to recognize and appreciate the psychological impact and consequences of this diagnosis. I have had numerous conversations with MS patients who are struggling with the psychological fallout that accompanies this diagnosis, whose loved ones are struggling with them, and who are desperately looking for supportive services, many to no avail. I have been saddened and disappointed to see huge profits made by providers and pharmaceutical companies who bill insurable medical services and medicines, while little attention is paid to the much less profitable mental health arena.    

I have been encouraged and excited to see the MS community embrace and appreciate the growing roles and benefits of Functional Medicine, Nutrition, Exercise, Complementary and Alternative Medicine, Yoga, and Ayurveda. I have worked to find support in dealing with my own medical and mental health issues, and have been attending to collateral mental health effects that MS has had on each member of my immediate family. I have learned to take a holistic approach to my self-care and to be open to any and all new ideas, theories, treatments, and research related to MS. [A1] I have learned through study and practice of Mindfulness and Meditation that my mind is the best medicine, and that there is nothing more crucial than having a clear mind in dealing with this disease. Mindfulness and Meditation has had the most positive impact on my overall wellbeing and quality of life. Connecting body mind and spirit naturally lends itself to improvements in lifestyle by attending to nutrition, exercise, and stress reduction. I have always had a loose meditation practice, a relic from childhood Yoga classes that my remarkably progressive mother sent me to when I was 9.  I believed that we were doing calisthenics/gymnastics and that shavasana, the resting pose at the end of a yoga class was the nap and reward I got for standing on my head or twisting myself into a pretzel.  My mother was a deeply spiritual and evolved person who infused everything that she endeavored with mindfulness, kindness, optimism, and unconditional love.  My mother was always my most influential spiritual teacher, and she taught me from the moment I was born until the moment she left this earth.  To be totally honest, I feel my mother’s profound influence still, every single day. I had been living with MS for 15 years, suffering profound anxiety, depressed mood and PTDD when I had the great fortune to begin studying Meditation and Yoga with MeriLynn Blum who was the first person to identify the trauma that I was dealing with. With MeriLynn’s guidance, wisdom and patience I was able to craft a strong and purposeful daily meditation and yoga practice that serves as the core of my self-care, in fact everything else I do hinges on this practice. MeriLynn is a transformative teacher, whose ability to communicate Yoga philosophy, and embodiment of what a true Yogi is rare and extraordinary. With MeriLynn’s guidance, I was able to reclaim a quiet mind, to be with what is, and to live in the power and comfort of the present moment. I will forever be grateful to MeriLynn Blum who was and remains an honored and adored luminary in my life. I am a graduate of Mindfulness Based Stress Reduction (MBSR), taught by Patrick Biody at The Chambers Center for Well Being in Summit, NJ. MBSR gave me the scaffolding to meticulously hang my meditation practice on and I am thankful to Patrick for demonstrating equanimity as he taught, and I am grateful to Jon Kabet Zinn for his influence on my Zen.  I am an active member of a New York Insight (NYI) Sangha, led by Joseph Schmidt, co-founder, Board Member, and previous Executive Director of NYI.  I have led this group in meditation and Insight Dialogue.  I am a trained Bereavement Group facilitator, and have been facilitating adult bereavement group since training in 2016. I would never have predicted how much this endeavor has enriched my life, and I am profoundly grateful to Mandy Zucker, MSW, Grief Recovery Specialist and Program Director at Imagine who opened the door for me to enter into this remarkable community. Mandi Zucker continues to teach me every time I facilitate I learn something spectacular, typically some gem that Mandi shares or facilitates herself.  I am certified in Mental Health First Aid by the National Counsel for Behavioral Health and the Missouri Department of Mental Health.  I have been trained and am certified in Reiki 1 & 2 by Eileen Alexander who is a Reiki Master, Personal Empowerment Life Coach, and who teaches Meditation and Yoga. Eileen is a master at sharing her wisdom and the teachings of Kundalini Yogi Behajan.  All of Eileen’s classes are therapeutic, meditative, enlightening and healing.

It is my greatest hope that my education and experiential knowledge of Mindfulness-Meditation -Mental Health- and Multiple Sclerosis resonates with you, and serves to support you in some way on your journey.  There are many times when I wish I knew then what I know now, only in that so much of what I have learned has cost great suffering that could have been mitigated had there been the support I so desperately needed.   There are so many nuisances with Multiple Sclerosis, and we each have our own MS story to tell. I hope that from My MStory you will benefit in some manner from what I have experienced, what I have learned, and from what I know

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