MY MSage Pamphlet
The wound is where the Light enters you. Rumi
I am profoundly grateful that you have found your way to My MSage as I am eager to add my voice to the chorus of people living and thriving with Multiple Sclerosis. My name is Stephanie Naphtali and I have been writing, thinking, studying, and cultivating MY MSage for many years. MY MSage has been born out of my desire to shine a light and call attention to the Mental Health implications and consequences of a Multiple Sclerosis diagnosis. It is my hope to be of service by sharing my experiential knowledge and education in the areas of Mindfulness-Meditation- Mental Health-and Multiple Sclerosis. It is my wish that you benefit in from what I have learned through experience and practice, and how the interplay of Mindfulness-Meditation- Mental Health- and Multiple Sclerosis can create a path for you to live with ease, despite this disease. I have come to know that the trauma from my MS diagnosis 22 years ago set into motion, and to coin a new phrase: Post Traumatic Diagnostic Disorder. This PTDD went unappreciated, under treated or maltreated and festered for many years. Unlike PTSD, PTDD specifically relates to the trauma associated with being given a life threatening or life altering diagnosis. The actual trauma of my diagnosis and resulting PTDD began the cascade of profound anxiety, depression, cognitive difficulties, and mood disturbances that I can only describe as aggressive discharges of anger, a short fuse. Regrettably, my husband and three children were on the receiving end of my angst, and suffered as a result of my mental health issues that were not appreciated or given the attention required to manage. I have learned that my MS diagnosis was in many respects a diagnosis that my entire immediate family shares, we all live with MS. Multiple Sclerosis has deep roots in my family, as it does in many families that I have come to know.
I am a Multiple Sclerosis Legacy, and suspect that many readers of MyMSage are as well. I have lived with MS my entire life, born into a family with an aunt by marriage, and the younger of her two daughters, a first cousin who had been diagnosed in the 1940’s and 1960’s respectively. I witnessed the impact that MS had on my Uncles family and on my entire close-knit extended family. I watched as physical disabilities progressed, and always sensed that the invisible aspects of MS wreaked havoc on each member of my Uncle’s family. I recall hearing whispered comments about my Aunts moods, her sharpness, sadness, bitterness. My aunt and cousin were diagnosed at times when there was little traditional medicine could offer MS patients. I do not recall ever seeing my Aunt stand or get out of her wheelchair, and my cousin’s MS was so aggressive, she became disabled very early on. Growing up I had a frightening view of this esoteric unpredictable disease. I have vivid recollections of trying to become educated on the subject of MS throughout my life, primarily to quell my own fears I suppose. MS was always in the backdrop of my life, the scary shadow in the corner. It seem as if I have always known that MS is a chronic, potentially disabling Neurological disease that affects the Central Nervous System for which there is no known cause, and no cure. On January 22, 1996 when neurologist John Robinton told me that he thought I had MS, I was alone, standing barefoot in a flimsy paper gown, in a dimly lit, freezing cold exam room. I had just celebrated my 32nd.birthday, been married for 4 months, and had 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 he started to draw the central nervous system on the white tissue paper covering the exam table. He was talking but I could not hear or comprehend a word after, “Looks like a duck, quacks like a duck…Stephanie, I think you have Multiple Sclerosis”….yes the doctor actually said that…the duck thing! 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 my happily ever after dreams and aspirations evaporate into thin air. It was literally as if I received a blow to the head and suffered a traumatic brain injury. I was petrified, entirely stupefied, traumatized. Driving home on the Garden State Parkway, alone with thoughts short circuiting in my mind, wondering how I would tell my husband of four months…”In sickness and in health,” my parents, new in-laws. I recall thinking that if I let go of the steering wheel and closed my eyes, this did not have to happen to me. That moment was the first and only time in 32 years of life that I contemplated suicide, and so began my dance with PTDD.
This profound trauma was further compounded the very next day when at the urging of my Uncle I called my cousin, his daughter who had MS to discuss the news of my diagnosis. I was dumbstruck when her response was, “And all these years they blamed my mother!” I can still hear her voice and those words in my head, funny how trauma stays with you. Once handed this diagnosis I was at a total loss, it was impossible for me to process, and I quickly learned that every person has their own ideas and reactions to MY MS diagnosis, and that often times, without intent those reactions were hurtful and traumatic as well. I knew very early on that this was not going to be an easy road to travel. For some of us the diagnosis came after a long and arduous process, as symptoms relapse and remit or mimic other suspects. For others a diagnosis came from an Emergency Room resident, an eye doctor, the internet. No matter how you are told that you have Multiple Sclerosis, there is significant trauma associated with this event. In the 22 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 for suicide and what I am calling PTDD have not been given the time or attention required. Over time research has exposed the profound psychological impact of MS related to cognition, emotional regulation, anxiety, depression, and other mood disturbances, and still I believe that these aspects of MS are often ignored, not discussed, or addressed post diagnosis. I have perused many avenues to improved health, and have found that a holistic approach to self-care has exposed me to many means of improved wellbeing. I have been a diligent and highly motivated student, always striving to improve my daily life and tend to my physical and mental health. I have a lifetime of experiential knowledge, coupled with extensive study of Mindfulness-Meditation-Mental Health and Multiple Sclerosis.
I bring to my MSage the experience of a former hospital administrator who has navigated the patient side of this complicated disease for over two decades. We are inundated with print, TV, and Social Media ads for new MS drugs, news reports on promising research and studies, new therapies, new theories etc. As a community we raise huge sums of money, while MS Societies, Associations, and Consortiums have grown large and extremely busy. Multiple Sclerosis is disease of the Central Nervous System, affecting each of us differently. The complexities of this disease are further compounded by that facts that much of the disease process is invisible, that the course of this disease is unpredictable, with periods of relapses and remissions that can belie ongoing disease activity. Successes and progress in treatments are difficult to quantify in the MS arena because MS behaves like moving target. I always cringe when someone claims a cure, knowing that the disease can be quite a chameleon as it relapses and remits lulling us into thinking that we are in fact cured. Multiple Sclerosis is a huge industry with profound financial stakes and consequences, and despite all the “progress” made in trying to understand and treat this illness, we are still at a loss for cause and cure. I have been disappointed time and time again when physicians rush patients to begin a disease modifying drug s while those newly diagnosed patients are in shock, traumatized, and ill prepared to make those decisions. The first measure of care ought to be Mental Health Support. In addition to the trauma of being diagnosed, MS patients quickly learn that there are profound financial burdens that come with the diagnosis. Multiple Sclerosis is a very expensive disease! In the 22 years that I have been living with MS, I have never been provided counsel or given information related to Disability benefits, or areas of financial concern that probably would have mitigated some of the financial burden that I bear. That financial stress alone can be monumental and have a profound impacts on a person’s wellbeing by causing additional anxiety, and limiting one’s ability to access and or pay for both medical and supportive services.
An MS diagnosis in 2018 is certainly different than it was for me when I was diagnosed over two decades ago. From a historical perspective and example, in 1996, Betaseron was the first and only FDA approved disease modifying drug that doctors could offer the MS patient. Currently there are 16 FDA approved disease modifying therapies, with the recent FDA approval of Ocrevus, a DMD that distinguishes itself as the first intended to treat both Relapsing Remitting, and Primary Progressive forms of MS, finally delivering a long awaiting therapy for the PPMS patients among us. Seems like everyone knows someone who has MS, probably more like two or three people who have it. I have been amazed by scientific discoveries, the success of the Human Genome Project, Stem Cell Research…the list could go on. MS is a hot topic…..Still there are so many misconceptions about MS that do not square with the reality of this disease. Despite the progress that has been made we are still at a loss for cause and cure. Multiple Sclerosis is disease of the Central Nervous System, affecting each of us differently, unique as our fingerprints, or a snowflake. The complexities of this disease are further compounded by that facts that much of the disease process is invisible, that the course of this disease is unpredictable with periods of relapses and remissions that can belie ongoing disease activity. Successes and progress in treatments are difficult to quantify in the MS arena because MS behaves like moving target over time. I always cringe when someone claims a cure, knowing that the disease relapses and remits lulling us into thinking that we are in fact cured.
The impetus for bringing My MSage to light comes from the many conversations that I have had with other MS patients over the years. I have been concerned that for so many the trauma of the diagnosis is hardly attended to, and that the Mental Health fallout and issues associated with MS are not the priority or focus of patient care. I have spoken with many patients who are in utter shock, and despair from having been told that they have MS, who really have nowhere to turn. I have heard legitimate patient concerns and questions about drug therapies, side effects, finances, prognosis… I could go on and on. I have been saddened by how infrequently I have heard a new patient referred for mental health support or counseling. In my own personal experience I was on my own and had very little guidance from my Neurologists related to mental health support, or services. Multiple Sclerosis is a formidable and extremely dubious disease to live with, and it is my belief that the Mental Health aspects, the invisible symptoms of MS that we know are involved in this illness, ought to be paramount in a patients care from the very beginning. We are often diagnosed between the ages of 20 to 40, in the prime of our lives, and this diagnosis is a lot to handle. I have been encouraged and excited to see the MS community embrace the growing roles and relevance of Functional Medicine, Nutrition, Exercise, Complementary and Alternative Medicine in the treatment of MS. I have seen huge profits made by Providers who bill insurable medical and ancillary services, while little attention is paid to not so profitable Mental Health Services. I have worked diligently and sought out support for help in dealing with my own Mental Health issues. I have also been dealing with the ripple effect that MS has had on the mental health of my immediate family. MS has long tentacles, and I have learned that addressing Anxiety, Depression, PTDD, and other Mental Health issues serves to strengthen one’s ability to live with ease despite this disease, and improved quality of life.
I the 22 years since my diagnosis, I have lived a full life. I am married and raising three children who are currently 16, 18, and 21. I have been a patient at a Neurology practice, as well as two large MS Centers. I was on a DMD for over a decade, and very recently had an infusion of one of the latest DMD approved by the FDA. I deal with symptom management, specifically spasticity, with medications and traditional medicine, and have added Yoga & stretching to my arsenal of tools. In terms of mental health symptoms of depression, anxiety and trauma I have taken medications, and have done psychotherapy. I have taken a holistic approach to my self-care, and have explored many avenues to improved health. I have come to know that the mind is very powerful medicine, and that my study of Mindfulness, and Meditation has had the most profound positive impact on my quality of life. Mindfulness and Meditation has provided a place for me to clear my mind, and it is that clarity that serves as the best medicine for me. Connecting body mind and spirit naturally lends itself to improvements in lifestyle by attending to nutrition, stress reduction, and exercise. I have always had a loose Meditation practice, a relic from my childhood when my progressive mother sent me to Yoga classes when I was 9. I believed that we were doing calisthenics/gymnastics, that shavasana was the nap I earned after standing on my head or folding myself into a pretzel! My Mother was a deeply spiritual and evolved person who infused everything that she endeavored to in her life with mindfulness, kindness, optimism, and unconditional love. My mother was always my most influential spiritual teacher, and she taught me from the day I was born until the day she left this earth. To be totally honest, I feel my mother’s profound influence in my spiritual growth still, every day to this day. I had the great fortune to study yoga and meditation with MeriLynn Blum, whose wisdom, insight, and remarkable ability to weave Yoga philosophy into every class. In studying with MeriLynn, I was able to cultivate a strong purposeful daily Meditation and Yoga practice. My daily practice has evolved into the core of my self-care, and everything else that I do hinges on it. Meditation allowed me to reclaim clarity of mind, to be with what is, and to live in the power and comfort of the present moment. I will always be grateful beyond measure to MeriLynn Blum who has been a remarkable luminary in my life. I am a graduate of Mindfulness Based Stress Reduction (MBSR) and routinely attend Graduate Day Sits with this group. MBSR gave me the scaffolding to hang my daily practice on, and I thank Jon Cabet Zinn for his influence on my Zen! I am an active member of a New York Insight 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 would have never predicted how much I believe this endeavor enriches my life. I am certified in Mental Health First Aid by the National Counsel for Behavioral Health and the Missouri Department of Mental Health. I have trained and been certified in Rikki 1 & 2 by Eileen Alexander who teaches Meditation and Yoga in the Kundalini tradition. Eileen is a master at sharing her own wisdom and the teaching of Yogi Bahjan.
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 some way on your journey. In many ways I have the benefit of hind sight, and years of experience that have finally delivered me to a place that no matter what is happening with my dis-ease, I am able to live with ease of mind.
I have learned never to discount any suggestions in care, and that struggled trying to deal with my anxiety, depression, and PTDD. have taken medications, done talk therapy, and pursued many avenues to improve my mood. I have come to a holistic approach to my self-care, and currently use functional medicine, traditional medicine, have married am no stranger to several MS Centers and practices, yet I know from my own personal experience that the most profound impact on improving my overall health and well-being has come from the attention that I have paid, and my ongoing study and practice of Mindfulness and Meditation. Mindfulness and Meditation have provided a place for me to clear my mind, and it is this clarity that serves as my best medicine for me.
I have been encouraged and excited to see the MS community embrace the growing roles and relevance of Functional Medicine. There is mounting evidence related to Nutrition, Exercise, and Complementary and Alternative Medicine in the treatment of MS. I have seen huge profits made by Providers who bill insurable services, medications, and the like, while little attention to the not so profitable Mental Health Services is paid. I have worked diligently with my own Mental Health issues, and have been dealing with the ripple effect that MS has had on my immediate family. MS has long tentacles, and I have learned that addressing Anxiety, Depression, PTDD, and other Mental Health issues serves to strengthen one’s ability to live with ease despite this disease, and improved quality of life.
The impetus for bring my MSage to light comes from the many conversations that I have had with other MS patients over the years. I have been concerned that for so many the trauma of the diagnosis is hardly attended to, and that the Mental Health implications of the diagnosis are not the priority that they ought to be. In a rush to start a Disease Modifying Therapy, I have found that well-meaning physicians are ill prepared to deal with the emotion trauma of such a profound diagnosis. I have spoken with many newly diagnosed folks who are in utter shock, have legitimate concerns about the drug therapies, and at least a million questions about their diagnosis that go unanswered. The fact is that there are no hard and fast answers to this mysterious disease. Multiple Sclerosis is a formidable and extremely dubious disease to live with, and I believe that the Mental Health aspects, the invisible symptoms of MS ought to be paramount in a patients care from the very beginning. We are often diagnosed between the ages of 20 to 40, the prime of our lives, and this diagnosis is a lot to handle. I the 22 years since my diagnosis, I have lived a full life. I have remained married, been pregnant three times, delivered and am raising three children, now ages 21, 18 and 16. I was on a DMD for over a decade, and very recently had an infusion of one of the latest DMD approved by the FDA. I deal with symptom management, specifically spasticity, with medications and traditional medicine, and have added Yoga & stretching to my arsenal of tools. In terms of mental health symptoms of depression, anxiety and trauma I have taken medications, and have done psychotherapy. I am no stranger to several MS Centers and practices, yet I know from my own personal experience that the most profound impact on improving my overall health and well-being has come from the attention that I have paid, and my ongoing study and practice of Mindfulness and Meditation. My practice of Mindfulness and Meditation has provided a place for me to clear my mind, and it is that clarity that serves as the best medicine for me. .
I have taken a holistic approach in my self-care, and have explored many avenues to improved health. I have come to realize that my mind is my best medicine, and that so long as I am clear minded, I am able to live with ease, despite the disease. Connecting body mind and spirit naturally lends itself to improvements in lifestyle by attending to nutrition, stress reduction, and exercise. I have always had a loose Meditation practice, a relic from my childhood when my progressive mother sent me to Yoga classes when I was 9. I believed that we were doing calisthenics/gymnastics, that shavasana was the nap I earned after standing on my head or folding myself into a pretzel! My Mother was a deeply spiritual and evolved person who infused everything that she endeavored to in her life with mindfulness, kindness, optimism, and unconditional love. My mother was always my most influential spiritual teacher, and she taught me from the day I was born until the day she left this earth. To be totally honest, I feel my mother’s profound influence in my spiritual growth still, every day to this day. I had the great fortune to study yoga and meditation with MeriLynn Blum, whose wisdom, insight, and remarkable ability to weave Yoga philosophy into every class. In studying with MeriLynn, I was able to cultivate a strong purposeful daily Meditation and Yoga practice. My daily practice has evolved into the core of my self-care, and everything else that I do hinges on it. Meditation allowed me to reclaim clarity of mind, to be with what is, and to live in the power and comfort of the present moment. I will always be grateful beyond measure to MeriLynn Blum who has been a remarkable luminary in my life. I am a graduate of Mindfulness Based Stress Reduction (MBSR) and routinely attend Graduate Day Sits with this group. MBSR gave me the scaffolding to hang my daily practice on, and I thank Jon Cabet Zinn for his influence on my Zen! I am an active member of a New York Insight 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 would have never predicted how much I believe this endeavor enriches my life. I am certified in Mental Health First Aid by the National Counsel for Behavioral Health and the Missouri Department of Mental Health. I have trained and been certified in Rikki 1 & 2 by Eileen Alexander who teaches Meditation and Yoga in the Kundalini tradition. Eileen is a master at sharing her own wisdom and the teaching of Yogi Bahjan.
It is my greatest hope that my education and experiential knowledge of Mindfulness-Meditation Mental Health-and Multiple Sclerosis resonates with you, and has a positive impacts on your journey with MS. In many ways I have the benefit of hind sight, and years of experience that have finally delivered me to a place that no matter what is happening with my dis-ease, I am able to live with ease, of mind.
If I were writing a book, My MStory, chapters would include: 1) The 411 for the Newly Diagnosed, 2) Newlywed /Newly diagnosed….”in sickness & in health,” 3) Pregnancy & MS: Three kids in four years, 4)Menopause and MS: Brain Fog….It is not all in your head, 5) Mental Health & Multiple sclerosis: Anxiety, Depression and Trauma, 6) Mindfulness Meditation- What Zinn did for my Zen, 7) Leaky gut and the Human Microbiome, 8) Functional Medicine & CAMs, 9) Nutrition: Swank, McDougall, Wahl….foods that heal, eating to live, 10) Big Pharma Vs. Marijuana or David Vs. Goliath ,11) Money and Multiple Sclerosis.
The wound is where the light enters you. Rumi
I am profoundly grateful that you have found your way to this site, and I welcome you to My MSage with an open heart and open arms. If I could reach through the screen I would offer you a hug, or a hand at the very least. It is my sincere hope that that you find some comfort here, and that the experiences and education I have to share, as a person living with and thriving with Multiple Sclerosis resonate with you. I have been writing, thinking, living, learning, and cultivating My MSage for over two decades, and I am eager to add my unique voice to the chorus of people living with MS, chronic / life threatening illness, or who have suffered trauma. The paths I have travelled have been difficult and dark at times, yet I have found genuine, compelling and effective tools for living fully, presently, mindfully, and joyfully despite whatever happens with my MS.
