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The Other Side of Myasthenia Gravis
The Marleen Burns Story
The following story of my experience with MG is really three stories in one as told by my mother; my sister, who is an R.N.; and my youngest daughter, who was twelve years old at the time of my diagnosis. We hope that sharing some of our feelings will help others who are living with MG patients to explain or understand how they feel.
My Mother’s View:
It is difficult to describe the feeling I had when I learned of my daughter’s diagnosis of MG. The information came in a letter from her, since we live about a thousand miles apart. At first it was that horrible feeling that one gets in the pit of one’s stomach, then disbelief, then the feeling that "I’ve got to call her just to hear her voice." Included in the letter was printed information about MG, which was informative, but it could not be talking about my daughter.
Then came the anger of WHY HER? Then some quiet feeling, because my mother had been diagnosed with MG and maybe I had passed the predisposition of this problem on to her. I had some premonition that she had a health problem, because one of her sisters had said that she was having some problems with double vision. Calling and talking to Marleen was reassuring, at least to me, in that she sounded like herself and I could convey my concerns. Then I called another daughter who is an R.N. to get her perception of the whole situation. I would have given anything to have been able to get into the car and drop in for a visit. Being with her during her thymus surgery helped me to cope with my feelings. I became more knowledgeable about the disease and came away with the feeling that she would be able to handle day-to-day happenings. There was a good family support system, and her friends and employer were very understanding of her limitations.
Nilva Leahy
Darlington, Wisconsin
My Sister’s View
Handing me a piece of paper, my sister Mar said, "This is what they say I’ve got." The words Myasthenia Gravis jumped out at me. Frankly, I felt relief. She had a diagnosis, and it wasn’t the brain tumor I suspected. As a nurse I knew what MG was, but I had never seen a patient with it; and I knew she was waiting for information, reassurance and honesty about the condition.
Attempting to keep my voice calm, I told her what little I knew about MG. At the same time I was thinking, "I’ve got to look this up, but I know it isn’t something anyone would want to have." My nursing textbook, published in 1974, shed little light on our immediate search for information. It stated that thymectomy was an " an experimental procedure" being used in the treatment of MG.
Mar and I shared a house; and for a couple of years she had demonstrated intermittent fatigue, headaches, weakness and drooping of the skin on one side of her face. Many conditions occurred to me- stroke, Bell’s palsy, sinusitis, and brain tumor. Her family doctor had been treating her for sinusitis even though the sinus x-ray showed her to be clear of infection. Mar had quit smoking, joined an exercise class, and started taking vitamins to increase her strength and energy level.
Mar found the Colorado Myasthenia Gravis chapter in the telephone book. Through them, information and acquaintance with other patients with MG were forthcoming. We went to a MG meeting on day; leaving the meeting, she grinned and said, "There’s older people there, and some of them have had MG for a long time." Only then did I realize that she feared she would die young. She was in her late thirties at the time.
Getting involved with the MG Association, educating myself and others, and helping start the monthly support group have been ways that helped me deal with Mar’s diagnosis. And yet, knowing more about autoimmune diseases in our family (myasthenia gravis, rheumatoid arthritis, and insulin-dependent diabetes) encouraged me to monitor my own health more closely. When I’m tired after a ten-hour day in the operating room or my leg gets tired holding in the clutch on my car, I wonder "Do I have MG?" Guess you could call me the "Worried Well."
Sharon Leahy
Aurora, CO.
My Daughter’s View;
My name is Kristine Burns, and for the last five years I’ve lived with Myasthenia Gravis every day. My mother has MG, and I was twelve when she was diagnosed in November of my seventh grade year. When I was asked to write this I wondered how I would describe the fear, desperation and worries of a twelve-year-old. There is no way to completely explain it, because I see things differently now; but I’ll try in the hope that someone else will know they aren’t alone in how they feel.
Mom looked terrible and was always so tired before she was diagnosed. She looked like she had had a stroke, and I was terrified. People were saying things would never be the same; that was an understatement. All I really knew was that Mom was going to all these different doctors and she wasn’t getting any better.
One day my Aunt Sharon insisted that my mom go see a neurologist and that was the day she was finally diagnosed. There was finally a name to what she had, but even that was scary. Mom brought the name of it home on a piece of paper, and we looked it up in my aunt’s medical journal. It was an old journal and didn’t offer a lot of help. I hadn’t seen Mom so exited for who know how long. I hoped this was like strep throat- you felt miserable, took some pills, and then you were as good as new. Unfortunately, it wasn’t anything like that.
It was a slight relief to know that Mom would finally be getting better, but I was still worried about her. Decisions were being made that were extremely hard to comprehend. There was talk of surgery: "What? My mom? No, they had to be mistaken!" However, they weren’t and Mom was scheduled for surgery in January. The holidays that year were really hard. Mom was constantly tired, and everyone was really worried. I was afraid we wouldn’t get through that season. It was extremely demanding to see Mom struggling to do everyday things and always be tired. After all, she was always the one who had energy before. Things are already changing and they were changing quickly.
Then January came and Mom went into the hospital. We took Mom to the hospital knowing that we would return the next day to wait for her during her surgery. We got up at 4:00 a.m. the next morning to be at the hospital by 6:30 when they were going to take her down to the operating room. We arrived just as they were finishing giving her pain killers. She was scared; and you could see it in her eyes, even though she was trying to be strong. We went her in the elevator, and then she was gone.
We knew that she was going to be taken to ICU when the doctors were done. Fortunately, the hospital had a waiting room for families; we waited for what seemed an eternity. Finally the surgeon came and told us she was in recovery and doing fine, but we had to wait for a while to see her.
We waited about another hour before we saw her, and everyone insisted that my sister and I go in first. What I saw when I entered the area she was in was a sight I will never forget. She looked like "death warmed over" and had tubes and machines hooked up all over her. She was pale, and I was petrified! She woke up and said, "Hi"; but she was exhausted. We didn’t stay very long so her mother and sister could go in to see her. We couldn’t stay very long because it was hard to see her like that.
Mom stayed in ICU for two and a half days and then spent another three days in the main ward. The day we brought her home she looked tired and had trouble walking upright because of the stitches. Mom couldn’t do a lot of normal things like button her jeans, open car doors, carry anything, etc. It was definitely one of the hardest things to watch. Gradually she got her strength back, but she still had limitations that were hard to adjust to. It took about another year before Mom finally got into control, and that was only after tons of medications. Once she got into control she was doing fairly well, but she still had problems.
Today, if Mom doesn’t get enough sleep or if she’s tired, she gets double vision and becomes downright cranky and sometimes difficult to live with. It passes. I have only a few words of advice: Deal with this as a family; it’s hard as it is, let alone by yourself. Understand that the patient is having their life drastically altered, too. And most of all, remember this quotation:
"That which does not kill you makes you stronger."
Kristine Burns
Aurora, Co.
This story has been updated in the August 1999 Newsletter. That and other first person stories are available in the Newsletter archives part of the members only.