Voices of Multiple Sclerosis: The Healing Companion: Stories for Courage, Comfort and Strengthby Richard Day Gore
Offering candid, heartfelt, and inspiring stories of 40 diverse individuals who have been affected by multiple sclerosis (MS), this compilation creates a connection that is vital to those dealing with the mysterious and difficult symptoms of this nerve condition. With 10,000 new cases diagnosed in the United States each year and its causes still not fully
Offering candid, heartfelt, and inspiring stories of 40 diverse individuals who have been affected by multiple sclerosis (MS), this compilation creates a connection that is vital to those dealing with the mysterious and difficult symptoms of this nerve condition. With 10,000 new cases diagnosed in the United States each year and its causes still not fully understood, these stories of personal experience act as a support group by offering advice and encouragement and creating a sense of community. The collection also features current medical information by noted experts in the fields of MS research and treatment. The resource section is packed with organizations offering hope and help for those with MS and their families and friends.
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Voices of Multiple Sclerosis
The Healing Companion: Stories for Courage, Comfort and Strength
By Richard Day Gore, Juliann Garey
LaChance Publishing LLCCopyright © 2010 LaChance Publishing LLC
All rights reserved.
Francis Scott Key
* * *
I was nervous, even scared. I had never really spent much time in a hospital before. Yet there I was, in Baltimore's Francis Scott Key Hospital. I was there because I'd had various problems. Odd problems, difficult to explain. The first of these had occurred the year before: I couldn't walk or use my hands, my speech slurred and a bout of vomiting went on, almost continuously, for three weeks. It was so unreal to me, only nineteen and having just begun university in New York. After those symptoms ended, I simply forgot about them. Forgetting them was easy at the time: three doctors each offered a different diagnosis that included severe vertigo, Ménière's disease, and something else equally vague. I didn't have an MRI, maybe because in 1988 MRIs were still prohibitively expensive.
But the symptoms did return. Now, in my Baltimore hospital room, I was placed across from a fidgety, slightly cantankerous older man. He confided that he was there because he had Parkinson's disease. He appeared optimistic and, cracking a wry smile, said he was taking an experimental medication. I admired his frank, detached, determined resolve. I'd never met someone in an experimental medical program, and imagined how difficult it would be to go through something like that.
Cowering in my bed, I dreaded the mysterious diagnostics that lay ahead: tests with odd names like VEP, MRI, EKG, EEG. The nurse came, but I only vaguely registered her presence. I was nauseous. I was scared. But she finally got my attention. She was roughly my age. Her big, beautiful blue eyes are what I remember most from that day. The day of my diagnosis.
The pretty nurse gave me a small, silvery balloon that read, "Get well". I didn't know where she got it. I didn't care. I was sweating and cold. She was sweet. I was sick. She was pretty. I was scared. She kept coming back, and back, poking her head past the partition to see me. I tried to focus on her eyes to distract me from my fears.
I didn't know it then, but my fears would come true. I was about to get a diagnosis that would — that will — burden me for the rest of my life.CHAPTER 2
* * *
My mom's multiple sclerosis has become such a part of our lives that I sometimes forget that she has not always had it. She was diagnosed with the disease at 18 and yet, despite her doctors' misgivings, had two children in her mid-twenties. For the next 36 years she continued to selectively follow her physicians' orders to the frustration and amazement of specialists, neurologists, and her own family. At 62 she has slowed down a bit, but does not blame the change of pace on MS. The disease is now at the secondary progressive stage, which she bluntly calls "the end stage." She recently retired after 21 years as a full time neonatal intensive care nurse and occasionally, will still joke about her health, saying, "Denial for the past twenty-five years has worked great!" MS may be part of her life, but it has never defined her.
Mom was born at a Japanese-American relocation camp in Heart Mountain, Wyoming during World War II. Despite having American citizenship, my grandparents and extended family spent four years in the camp, accepting their circumstances and making the best of inhumane conditions. In 1946, after the end of the war, a generous Mormon family in Ogden, Utah sponsored our family out of the camp and my grandfather sharecropped on the family's land for a year to make enough money to return to their own farm in Arroyo Grande, California. After five years in Arroyo Grande, my grandfather left farming for a better life and moved his family of five to Los Angeles.
Mom describes herself as "the typical second child" who was constantly on the move and constantly in trouble. My grandmother calls her "the most challenging of all four girls" and my mom still recalls my grandfather often repeating, "I know you can do better" to mediocre reports cards. During junior high school our family moved to the San Gabriel Valley where the kids were the only Japanese-Americans in the school. Yet Mom never saw herself as different from the other students. Like other Japanese-Americans after the war, my grandparents encouraged their children to view themselves as Americans. Mom's attitude continued into high school, where she was a member of the Red Cross Club and Drill Team, never missed a dance or social function, and enjoyed being in the popular clique. She still jokes with my father about being her high school's Prom Queen.
In February 1963, during the middle of her freshman year at California State University at Los Angeles, Mom began to suffer physical exhaustion. She remained in college and was active in her sorority and as a Song Leader, but began sleeping up to 18 hours a day and maintaining her social commitments became a challenge. She began to lose her sense of balance, suffered from dizziness and experienced tingling and numbness in her left hand and foot. She soon lost hearing in both ears and vision in her left eye. Since her family physician could not find a cause to her illness, my grandmother took her to my great-grandmother's Japanese doctor in Los Angeles. Mom recalls that at that time, Magnetic Resonance Imaging (MRI) was not available so the physician, based on her symptoms, worked through a process of elimination and eventually provided an accurate diagnosis. She was then referred to a doctor at Huntington Memorial Hospital in Pasadena who was actively researching MS. Instead of medication, he prescribed a program of substantial rest and a diet of limited dairy products and no red meat, since he suspected that chemicals in the meat adversely interacted with nerve cells. Since then, she has followed the diet religiously and believes it has kept her healthy and active.
Mom remained in college until her junior year then decided to pursue nursing. She completed medical assistant school then worked in doctors' offices for three years while still living in Los Angeles. During this time, her high school sweetheart proposed. He had been by her side during the initial diagnosis and was aware of how MS affected her. She recalls "giving him an out" by telling him he didn't have to marry her, because she didn't know how severe the disease would become. Her greatest fear, then and now, is the loss of independence and reliance on a wheelchair. She didn't want him to feel responsible for her health care, but like my mom, he didn't allow MS to make his decisions and they married in 1966.
In 1970, my parents moved from Los Angeles to San Diego, where my father began his career as a school teacher, my sister was born and my mom opened a home daycare so she could be home with me and my sister. For six years she managed the daycare alone, opening the front door at 6 o'clock in the morning and sending home the last child at 6 o'clock at night. Once I began kindergarten in 1976, my mom returned to nursing school. At the end of her program she experienced her first relapse. After spending too much time in the sun, she became overheated and experienced weakness, exhaustion and a tingling in her extremities. While in the hospital, her physician treated the relapse with steroids but discovered she was part of the 1% of the population that suffers from a severe reaction to steroid treatment. She lost the use of her legs. After eight weeks of oral steroids she eventually recovered. Since the initial relapse, she has had four more hospital stays along with intense steroid treatment.
In 2002 while working twelve hour shifts as a fulltime NICU nurse, her health began to deteriorate. She felt increasingly exhausted. In late 2003, she underwent back surgery to remove a vertebrae crushed by the effects of severe osteoporosis. She assumed that after a few months she would return to work and resume her hectic schedule; however, due to trauma suffered to her nerves in her back her left leg became flaccid. After several months of being unable to work, her employer required her to take a medical retirement. Mom was devastated. She was only 59 and loved going to work. She felt that her identity was being taken away. She cried for several months as she dealt with the medical trauma, forced retirement and the search for a new identity. For an individual as strong and independent as Mom, this series of events was completely demoralizing.
After her retirement she experienced several minor MS relapses which were treated with steroids. She also completed three months of physical therapy for her back. As her MS progressed, she tried Novantrone, which was intended to last for two years; yet after one year, her doctor noticed little progress. She now uses a cane to steady her walk and an orthotic on her left leg for severe foot drop.
Her doctor has identified plaques on her spine, where demyelination has occurred. He is not certain if the plaques are reversible and suggests that steroid treatment will alleviate the severe inflammation. If that's the case, she might regain some leg movement. She also visits a licensed Asian medicine doctor and M.D. who has focused on improving her circulation. This approach has relieved some of her exhaustion and increased her energy level. The concern shared by Mom and her doctor is the over-stimulation of her immune system, which can cause a relapse. Maintaining her health requires ample rest, a strict diet, and a delicate balance of both western and eastern medicine. She no longer sits on the floor like she used to, but continues to maintain care of the inside of her home and do as much as she can.
When Mom and I sat on my couch to write her story, she regretted the ways MS has impacted our lives. I watched my two year-old sitting on her lap, content to play with her fingers and listen to the conversation. As she reflected on the past, I tried to identify personal or family adjustments made because of the disease, but it was impossible. MS is simply part of our lives. Mom finally mentioned how MS kept us from enjoying activities that other families did — like going on hot vacations. As she finished her sentence, we laughed because it sounded ridiculous. Since Mom cannot tolerate heat, I grew up in beautiful San Diego and doctors wrote Mom prescriptions for swimming pools. I thought I was the luckiest kid alive.
There are moments when I marvel at how she defies the odds. When we hear about celebrities or friends diagnosed with MS and their rapid decline, I have to remind myself of how devastating this disease can be. Mom has managed to control her MS. It does not define her. She believes that diet, rest and living in a cool, temperate environment have kept her well. We also know that my dad's support and fierce devotion have made a world of difference. He says "no" to favors asked by friends and family, and this has kept her healthy. Perhaps it's her spirit and will to prove others wrong, such as a cousin who recently said, "We didn't think you'd live to see 60!" For many, this comment could be devastating. For our family, it's a reminder of how my mom has successfully managed this disease.
Recently she hinted at the possibility of great-grandkids. I joked that my oldest son, who is now six, won't be having children until his late 30s which would put her around 100. She reminded me that our family members live a long time. My great grandmother lived to 94 and my grandmother is independent at age 88, so it's not out of the question. We rarely mention MS because up to this point, it hasn't controlled her life. We remind the grandkids not to knock over grandma as they race through the house, but I'm guessing this is common in many households. We cannot know how MS will continue to impact her and the ones who love her. Lately, Mom has become increasingly frustrated with the disease, but she continues to live strong. She is living for her husband, her children, her mother and friends. She is living for her grandchildren. Most importantly, after 44 years of managing MS, she continues to live triumphantly.CHAPTER 3
Living (and Sometimes Laughing) with Multiple Sclerosis
Melissa Scholes Young
* * *
At six petite pounds my daughter simply slipped softly into the world. I wept happy tears and healed, Isabelle nursed noisily and sprouted, and my husband Joe crashed into us both. For the first few days following Isabelle's birth, we struggled to be the perfect Pampers commercial: A happy couple laughs as they powder their baby's precious parts and change diapers. ... They embrace in the dark while peering over the white, latticed crib as their angelic newborn snoozes. ... The smiling lovers casually stroll together down the tulip-lined sidewalks and share their baby's cherubic slobber with neighbors.
But amidst the joy and stress, my devoted partner began slipping away. At first, Joe just seemed tired. Who isn't exhausted with a newborn and midnight nursings and crack-of-dawn diaperings? Our worries over money were also endless. Between my husband's measly graduate school stipend and my public school teaching paycheck, we quickly plunged into poverty.
As Isabelle and I bonded, Joe seemed to become more removed. Then he reported dizziness and nausea. Soon he didn't trust himself to hold the baby. And then one day my healthy, strong husband collapsed at a bathroom sink and lost all muscle control. He couldn't stand or even pull himself into a sitting position, and he wavered near unconsciousness. With the panicked help of neighbors we folded Joe into the car, strapped Isabelle into her seat and rushed to the emergency room.
Many perplexed doctors later, Joe was loaded into a wheelchair and sent home with drugs to wait for more tests. The best the doctors could tell us was that he had a severe case of labyrinthitis, a fancy word for ear infection, due to a head trauma. During the course of the doctor's interrogations, it was revealed that my husband had knocked himself silly several weeks before by banging his precious brain on an exposed pipe in our basement while playing indoor fetch with our overzealous puppy.
We laughed nervously over the diagnosis and tried to pretend the explanation was really that simple. I tucked us all into bed to recuperate. Joe drifted in and out of consciousness and proclaimed the holiness of the wondrous drugs while I drifted towards insanity with an infant who refused to sleep and a husband who did nothing but sleep.
Joe didn't get better. His nausea worsened and he began vomiting. The doctors kept telling us that he simply needed more rest and less stress. The wheelchair that had moved him easily around the hospital was absent in our three story home; neither of us could find the courage to broach the subject of its potential necessity. I locked myself in the bathroom one day for a good cry and realized that the façade was breaking down. Between sobs I called Joe's mother and asked her to fly up and sprinkle around some of her famous fairy dust. Joe and I had passed on the doctor's perplexing diagnosis, but we hadn't fully shared his condition with our family. I think we were in new baby bliss and denial ourselves. When you are young and fearless you just can't imagine anything proving you otherwise.
With the help of Joe's mother, we returned to the hospital with our now 10 day-old baby for another round of MRIs. The doctors were now convinced that something was terribly wrong with my otherwise healthy husband. Yet no one was ready to give us a verdict, and we were simply not prepared to process anything else. Again, the doctors sent us home to worry, to wait, to medicate. Joe began walking again, but he had lost a lot of weight and was now very weak. He still didn't trust himself to hold Isabelle, and he cried with shame once when he stumbled and sent our baby tucked in her car seat flying across the floor. Luckily, she was okay.
Joe was finally diagnosed with multiple sclerosis when our newborn was two months and two days old. At the most joyous time of our lives, the world came crashing down as if struck by a wrecking ball. At first, Joe sank into an unbearable and exhausting depression, and my carefree, spontaneous husband became a serious, melancholy old man overnight. His mood slowly bounced back with his health, but the trip was rattled with many late night doubts and what-if conversations I had never imagined when I said "I do." There were endless doctor's visits coupled with endless doctor's bills. Our baby, though, was our light and laughter through our adjustment to the daily demands of the diagnosis. We both turned our attention towards her amazing and happy simplicity. In her new discoveries about the world Joe and I slowly learned to take things more day-to-day.
Excerpted from Voices of Multiple Sclerosis by Richard Day Gore, Juliann Garey. Copyright © 2010 LaChance Publishing LLC. Excerpted by permission of LaChance Publishing LLC.
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Meet the Author
Richard Day Gore is editor of the Voices Of series. He lives in New York City.
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I have multiple sclerosis (now going on for 23 years). I enjoyed this book very much. I could relate to some of the, "voices", narratives of some of the people, and others were upsetting. I could understand the feelings of the caretakers. It was quite insightful. I learned more about my disease and myself from a different point of view. It was a safe way for me to be exposed with more progressive forms of MS, since my disease has been changing over the years (worsening of symptoms). Highly recommend to care givers, people with MS or people who must work with the chronically ill.