My MStory

My MSage (continued)

I’m 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 were diagnosed in the 1940’s and 1960’s respectively, times when there was so little known about the disease and virtually nothing traditional medicine could offer. I have no recollection of my Aunt standing or taking so much as a step, and my Cousin had an aggressive course of the disease that confined her to a wheelchair as a young woman and she died at age 56. The physical impact MS had on my relatives was obvious but the psychological impact that the disease had was entirely unappreciated. My relatives suffered with numerous psychological issues and sadly their lives ended in divorce, isolation, and estrangements. Throughout my life I recall hearing other relatives described my Aunt & Cousin as BITTER, as if bitterness was the natural outcome of their disease. The truth is that there was little known about the Mental Health impact that MS can have, and very little scientific research specifically looking at Mind Health and the Disease.

Multiple Sclerosis (MS) is an unpredictable chronic, often disabling disease of the Central Nervous System (CNS) caused by damage to the myelin that is the protective coating surrounding and insulating nerve fibers.  Damage to the myelin can happen anywhere in the CNS that includes the brain, spinal cord, and optic nerves, and it disrupts the ability of the damaged parts of the central nervous system to communicate, resulting in a host of symptoms including, but not limited to: numbness, weakness, blindness, vertigo, difficulty with balance to name a few.  Recently, there has been a growing understanding and appreciation of the profound Mental Health impact that MS can have, specifically related to; depression, anxiety, cognitive function, mood disorders, and increased risk of suicide. There are an estimated 400,000 people in the US diagnosed with MS and 2.5 million globally. In my opinion these numbers are grossly underestimated, considering that MS can be illusive to diagnose as it mimics many other suspects, and often relapses and remits for long periods of time. Symptoms typically present in early adulthood between the ages of 20-40 and MS effects almost three times more women than men. MS impacts everyone differently, and no two people have precisely the same disease as injuries to our CNS vary in number, size and location.  There has been progress understanding the underlying disease process, and in treating symptoms, still the cause is unknown, and there is no cure.

Multiple Sclerosis has always been in the backdrop of my life, having witnessed my Uncles family implode and how MS corroded the fabric of my huge extended family. The TRAUMA of my diagnosis set into motion and to coin a new phrase: Post Traumatic Diagnostic Disorder (PTDD). This PTDD went unappreciated, maltreated, and it festered for 15 years, causing horrible and prolonged suffering. PTDD specifically relates to trauma associated with a life altering diagnosis or near death experience. (Post Traumatic Diagnostic Disorder is not exclusive to MS as it applies to any life threatening or life altering diagnosis, disease or event, yet I have coined this phrase relating to MS where I have a lifetime of knowledge to share.) When the Neurologist told me that he “thought” I had MS I was alone, standing barefoot wearing only a flimsy patient gown in a dimly lit freezing cold exam room. I was newlywed, married just four months and had just become the proud Mom to a German Shepard puppy that we rescued and named Sage. At Thanksgiving dinner I noticed strange sensations in my feet, it was as if I was walking on cotton balls and then after a few days they went numb. In early December I celebrated my 32nd. birthday and noticed that my left hand had become numb, and by the time the ball dropped New Years Eve both hands and feet were numb. I was sure that my numb extremities were nothing to be concerned about, that I must have pulled a muscle or pinched a nerve because we had just moved into an old house where I had been stripping furniture, removing wallpaper, and painting. I recall shivering and trembling uncontrollably in a way that I had never before and have never since! My brain began short circuiting, my thoughts were chaotic and immediately went to the darkest recesses of my mind.

On January 22, 1996 when Dr.Robinton said, “ Stephanie, it looks like a duck, quacks like a duck, waddles like a duck…I “think” you have Multiple Sclerosis,” (YES he used the duck analogy) something profound and life changing happened to me! When I heard the words Multiple Sclerosis I was petrified and it was as if I sustained a traumatic brain injury, only the blow to my head was delivered in two words…Multiple Sclerosis. The doctor began drawing the central nervous system on the paper liner covering the exam table, and went on to discuss differential diagnosis, but I could not make sense of the words coming out of his mouth, I literally could not collect my thoughts. The Neurologist made my diagnosis without the benefit of an MRI, lumbar puncture or other diagnostic tests that would be essential to confirm my MS diagnosis, nor did the Doctor consider the fact that I was newlywed or MOST IMPORTANTLY that I was ALONE. On the drive home from that appointment I kept hearing the vows I had so recently uttered, “In sickness and in health” repeat in my head as if they were on loop. I have vivid memories of trying to compose myself, to calm my mind, telling myself that the doctor was wrong, that I was strong, that I could handle this…but the most vivid memory I have from that drive home was hearing myself say out loud …”Stephanie, let go of the steering wheel, this does not have to happen to you…. end it right now before it begins!” Had we not adopted Sage, I might have let go of the steering wheel but I remember feeling a maternal pull to get home to my puppy. I look back at the day and realize that almost immediately after hearing my suspected diagnosis, I had my first suicidal ideation…trauma can do that.

It would take a very long time for me to fully appreciate the magnitude and impact that this trauma had on my mind health, and I would suffer for many years struggling to reclaim clarity of mind, and to collect my shattered thoughts. Whether your diagnosis comes after years of chasing strange esoteric symptoms that come and go and finally naming it comes as a relief of sorts, or out of the mouth of an ER Resident that has yet to cultivate bed side manners, hearing that you have a chronic progressive illness that can cripple is traumatic. The PTDD that I suffered immediately following my diagnosis manifested as a cascade of profound anxiety, depression, cognitive difficulties, and uncharacteristic mood disturbances that I can only describe as aggressive discharges of anger, a short fuse. Regrettably, my husband and three young children were on the receiving end of much of my angst and suffered collateral trauma because I was so ill. For 15 years post diagnosis I was profoundly disabled by the invisible aspects of this disease while all that time my physical abilities belied how horribly sick I was. I have learned that I do not have sole custody of my diagnosis, that my immediate family shares my diagnosis as they have lived intimately with this disease. MS has deep roots in my family and in many families, as nearly a fourth of individuals diagnosed with MS have relatives that share their diagnosis.

In addition to the traumatic response to my diagnosis, I suffered Complicated Grief Disorder as I instantly became immersed in Grief that was all consuming and entirely unfamiliar to me. Complicated Grief is defined as; the occurrence of a persistent and pervasive grief response characterized by longing for the deceased or persistent preoccupation with the deceased accompanied by intense emotional pain over long periods of time, as Grief that is Complicated by adjustment disorders especially anxiety and depression. I was in a constant state of GRIEF, grieving losses obvious, esoteric and so many invisible. There is a lot of mourning attached to illness, it is difficult to grieve yourself, your personal losses, losses that are real, imagined, anticipated or inevitable. How does one begin to wrap their brain around the GRIEF associated with losing your mobility, eye sight, aspirations, dreams, self esteem?  I was traumatized by my diagnosis and from that trauma a very complicated relationship with Grief began, because the person I was grieving was Myself!  From the moment I was diagnosed, and for the fifteen years that followed I felt as if my head was in a cloud, I could not think straight, sleep, I ate too much or too little and I was entirely unable to regulate my moods. During this long and painful period of my life I sought help from neurologists, psychiatrists, and mental health professionals who would tell me that I was suffering a “situational depression” and promptly prescribe a pill to elevate my mood, quell my anxiety or increase my billable therapy hours. It’s difficult to identify Complicated Grief as grieving is a highly individual process and often concurrent with depression, anxiety and trauma. l believe that we must pay attention to Grief if we are living with chronic illness so that we are able to identify and attend to this specific aspect of our mind health. Layered upon this Complicated Grief was a decade of significant losses beginning in 2006 when my Father passed, ending in 2015 when my Mother died. It was not until my precious Mother’s passing that I had a spiritual awakening of sorts and began to understand that my daily practices of meditation and mindfulness had delivered me to a place where my actions and reactions to all circumstances were governed by a sense of calm. I attribute this mind shift to the work that I did with MeriLynn Blum, a true Yogi, remarkable teacher, and Yoga Therapist. MeriLynn was the first person to recognize the role that Trauma played in my state of mind, and how Grief compounded my anxiety and depression. I studied Yoga, Meditation and Mindfulness with MeriLynn for three years before my Mom passed, and cultivated daily practices that proved to reduce stress and improve my quality of life. MeriLynn relocated and stopped teaching shortly after my Mom died, so in a matter of weeks I lost my Mother and my Mentor, the pillars of my support….talk about GRIEF! I was at a crossroad of sorts, concerned that I would be consumed by these losses and fall back into a dark place, so I began searching for support, another Guru, traditional therapist, new psychiatrist. I attended numerous yoga classes looking for a teacher, interviewed several therapist, doctors, all to no avail. While searching for support I noticed that my daily practices of meditation and mindfulness had helped me to move through my grief, that I was not feeling depressed, having debilitating anxiety attacks, or ruminating on thoughts for hours on end. Mindfulness and meditation create opportunities for me to dwell in the comfort and perfection of the present moment so when my Mother died & MeriLynn relocated I understood that my Grief response was no longer debilitating and that I was free from the grasp that it had on me. Daily practices of meditation and mindfulness provide stress relief, support clarity of mind, and create opportunities so that I am better able to access the here and now, yes the Present Moment.

Much has changed in the MS arena since my diagnosis nearly a quarter century ago. We are inundated with TV, print, and social media ads for new MS drug therapies as well as reports of promising research, theories, and studies. As a community we raise enormous sums of money while MS Societies, Associations, Practices, and Consortiums grow large and very busy. In the years since my diagnosis when Betaseron was the one and only Disease Modifying Therapy, (DMT, drugs intended to slow the progression of the disease) available, 15 more been brought to market and there are many in the pipeline. In addition to DMT’s many drugs have been developed for use in symptom management. We have learned through experience and time that many medications used in treating MS come with significant side effects that include depression, mania and suicidal ideation making treatment complicated for this vulnerable population.

I bring to My MSage the eyes and professional experience of a former Hospital Administrator who has navigated the patient side of this illness for decades. MS is a huge industry and patients quickly learn that there are substantial financial implications once diagnosed with MS, or any chronic, progressive illness for that matter. DMT’s typically come with hefty price tags that often limit one’s ability to access and pay for therapies. It has been frustrating and disappointing to see HUGE profits made by providers and big Pharma who push expensive drugs and billable medical services, while little attention is paid to the less profitable mental health arena. In the Mental Health Arena we face substantial shortages of mental health professionals and facilities that are further mired by the fact that many Mental Health Providers do not accept or participate with Insurance Carriers, further widening the gap of accessible and affordable mental health services. In addition to expenses related to treatment and therapy, there are lifelong financial concerns for people with MS due to the chronic nature of the disease and its potential to cause disability. Issues surrounding employment, Social Security Disability Benefits, Long Term Care and the like are important to attend to. Chronic illness is very expensive, and the dollar amounts associated with managing and treating MS over the course of ones life are nothing less than astonishing.

It has been excited to see the MS community and other communities living with chronic illnesses embrace and appreciate the growing roles and benefits of: Functional Medicine, Nutrition, Exercise, Yoga, Positive Psychology, Complementary & Alternative Medicine. I have learned to take a Holistic approach to my care and have always been open to new ideas, theories, treatments, and research related to MS. Treating and managing MS is an ongoing, multifaceted, and evolving process that ought to include an array of modalities that attend to physical and mental health issues. In the near quarter century since my diagnosis I’ve experienced the gamut of treatments for MS from disease modifying drugs Copaxone & Ocrevus to Acupuncture & Ayruveda . In dealing with Mind Health issues I have worked with a wide array of providers, psychiatrists, psychologists, social workers, Shamans, Energy Healers and Yoga Therapists. I believe that a new understanding of Multiple Sclerosis is emerging, and that this view affirms and identifies the Mind Health issues that often accompany this disease. With this new understanding and attention to Mind Health matters, protocols to identify, manage and treat are being developed and attention is being paid in the research and scientific community to Mental Health of people with MS.

Connecting mind, body and spirit naturally lends itself to improvements in lifestyle by attending to nutrition, exercise and stress reduction. Looking to strengthen my meditation practice, I enrolled in Jon Cabet Zinn’s Mindfulness Based Stress Reduction,(MBSR) course. MBSR became the scaffolding that I used to meticulously hang my daily meditation practice upon. With clarity of mind and new relationship with Grief I looked for opportunities to support others dealing with Grief so to that end I trained to became a Certified Bereavement Group Facilitator and have been facilitating loss groups for several years now. It’s been my privilege to bear witness and hold space for those coping with loss, to companion the grieving. I have joined a NY Insight Sangha that Sits weekly, and routinely attend day log Silent Sits with different meditation groups. I have continued my efforts to fortify healing and self care and earned certifications in : Riekki 1 & 11, Mental Health First Aid, Suicide Awareness, and ASIST, Applied Suicide Intervention Training. I continue to pursue education and experiences that enrich my ability to provide support for others who are coping with Multiple Sclerosis, Trauma and Loss. I have learned from experience and practice that meditation and mindfulness were the agents that restored my clarity of mind, calmed my anxiety, and lifted my mood. In no way do I wish to diminish the value psychiatric care in terms of medication and therapy, rather I offer that practices of Meditation and Mindfulness were the catalyst for me that resulted in very real and significant change in my state of mind. Daily practices of Meditation & Mindfulness consistently provide opportunities for me to dwell in the freedom, comfort and calm of the present moment. The neuroscience behind mindfulness and meditation has mounted and we know for a fact that neuroplasticity, the brain’s ability to reorganize itself by forming new connections, to rewire itself so to speak is a real and measurable phenomenon. MS is a disease that damages the wiring of our nervous systems so when we engage in efforts to bypass those injuries, find new pathways to pursue we can have a real impact on our quality of life. The mind is powerful medicine and clarity of mind is essential so that I am able to effectively manage my MS and improve my quality of life.

It’s my greatest hope that my education and experiential knowledge in the areas of Mindfulness, Meditation, Mourning, Mental Health, and Multiple Sclerosis resonates with you, and serves to support you in some way on your journey. Nothing that I say ought to be percieved as medical advice, I am sharing my personal journey , observations, and ideas. Bottom line, My MSage is simple: Meditation and Mindfulness have had the most profound impact in supporting me as I journey through life navigating a very complicated disease. Maintaining my mind health is the most essential element in my overall well being and quality of life. I am always searching for avenues that will improve my quality of life, and remain open to new advances in technology, medicine, and research involving Multiple Sclerosis. Meditation is medicine and Mindfulness is a practice and invitation to live in the freedom and perfection of the present moment, and in the present moment, there is peace.