On October 12, 1978, I was an average American middle class woman with a husband, three children, a two story house, two dogs, one cat and a full time job in insurance as a claims examiner, and more than I could possibly do on any given day. On October 13, 1978, I was in the hospital while life as I had known it up until then began to change irreversibly, irrevocably like the old television pictures fading from bright to black, then a pin-point, and then, poof……gone.
I woke up the morning of October 12th, and sat on the side of the bed for what seemed like ten minutes trying to will my body upright. My body felt leaden and heavy and like it belonged (surely) to someone else. It had been like this for awhile. Every day was more of a struggle and my body felt like dead weight that I had to transport. It seems that I was falling apart at 35. Being conscientious, I made it to work, not a simple procedure. First, after trying to make myself look somewhat professional, I had to motivate a couple of teen-agers to get going, feed and dress a two year old, deliver them all to separate locations, and drive 35 minutes in rush hour traffic in order to be at my desk by 8:00 a.m. It was a familiar routine that I had been doing for over a year. At 5, I reversed the routine, going home (although my husband had picked up the children generally); cooking dinner; motivating teen-agers to get off the phone, quit watching T.V, and do homework, tried to give a cranky baby attention as he crawled up my leg while I was cooking dinner. Bathtime, storytime, and finally bedtime. About 10:00 p.m., I could do a load of laundry, pick up toys, etc and try to have a moment to breathe before I went to bed. No wonder I felt tired…..and leaden.
At my desk, I realized I must go to the doctor (again). When I told my boss, he said, “Maybe it’s the flu.” But I had had the “flu” three times in the previous two months. I didn’t voice that as I didn’t want him or anyone to know how worried I was. No one but my husband knew how everyday living—life—had become a struggle for me. That I felt most days like I was wading in mud or four feet of water. No matter how much I slept, I didn’t feel refreshed. I quit going to the doctor because my vital signs and routine tests were always normal. The last visit, the doctor had said, “There’s nothing physically to indicate the symptoms you have; maybe you just need a vacation.” After hearing about my schedule, he had also offered me a tranquilizer which I refused. Later, I was to find that was a fortuitous decision. I had left his office feeling like a hypochondriac, so I had quit going even when I thought I had the “flu.” But that day, I knew I had no choice….I couldn’t keep going the way I felt.
My doctor at that time was an internal medicine doctor and someone my husband had visited for a long time, so he felt like a family friend. In his office that day, he said, “Of course you’re tired—it’s called life in the fast lane.” Intuitively, I knew it was more than that, so I tried to convey my dejectedness to him, listlessness, inertia, no enthusiam, a heaviness similar to depression, but I knew I wasn’t depressed. I stopped. He was listening to me, really listening. He told me to check into the hospital the next day for tests. I panicked. My children, my job; I was important; but life will teach you lessons or you can learn from life wherever you are.
Lesson #1: No one is that important or irreplaceable; there is always someone to do your job.
When we drove up in front of the hospital the next day, en masse; my husband, myself, and my daughters, 16 and 13, and my son, 2 ½; I immediately saw the bronze plate that said, GRANVILLE C. MORTON, CANCER AND RESEARCH HOSPITAL. An overwhelming fear gripped me; my God, the doctor must think I have cancer. My 16 year old told me years later that she saw the sign also and thought that I and her father weren’t telling her something. After I checked in, and my family and I were cozily crowded into my private room (different times; you could check in for tests…..and have a private room in 1978), my son started rolling me up and down in the bed with the remote control. At one point, I must have looked like a refugee from an “I Love Lucy” episode as both ends of the bed went straight up in the air along with my legs. We all laughed. Life goes on when you’re 2, no matter what. After my family left I was alone for the first time since I could remember. No matter how much people care; they can’t do it for you. Life’s existential lesson slapped me in the face. I pondered the events that had brought me to this place, and wished for a crystal ball. The shadows were frightening. Clarity always felt safer. I had always had a definite need to know. The nurse came in, took blood, and told me what to expect the next day; it sounded grim.
Lesson #2 was learned the next day: If you are not sick when you check into a hospital, you will be before you leave.
The tests they ran made me feel sicker than I had felt the day before. I couldn’t wait for it all to be over. Probably was a good thing I didn’t have a crystal ball so that I didn’t know that that day was day one of SEVENTEEN---of THIS confinement. The next four days seemed like forty. They were interminable and full of tests which were tedious at best and painful at least. For one test, several nurses attempted to get a vein with a needle many times. They called in the head nurse, and when she was finally successful, I said thank you. She ducked her head for a minute, then raised it and with glistening eyes said, “Never thank anyone for hurting you.”
Lesson #3: Never thank anyone for hurting you.
The third day the doctors were puzzled. They were not finding anything. I felt discouraged, and finally….depressed. All that money and time and what if they sent me home with a diagnosis of: You’re O.K? But I didn’t want the alternative either. Deep down I knew I was not okay; I felt that I had been sick for several years and had discounted it in a myriad of ways….and just coped.
Secretly I thought I would have to check into the mental ward because if they told me there was nothing wrong physically, that would mean I was doing it to myself. Even if it was emotional or psychological; I knew I had to have some kind of treatment; that I couldn’t live that way anymore. Dr. Khan, a soft spoken man from India, reassured me that he did believe that I was physically ill, and they would find the source. “It may be as simple as a vitamin deficiency, and of course, we hope for that,” he stated, “however, tomorrow, because of the symptoms we are observing, we are going to begin to look for neuromuscular diseases.” He then told me they would start with a lumbar puncture for Multiple Sclerosis.
My heart sank. I know what MS means or at least I know what one of my friends was going through…..life threatening, crippling, wheelchair (I have since learned there all forms of MS and she had had severe exacerbations). They told me I had to lay perfectly flat after the lumbar puncture; to raise my head could bring on a severe headache. I laid very still and prayed that I would not have MS; the waiting seemed interminable. The test was negative; I was relieved and ready to move on through my valley.
Lesson #4: Some demons are more frightening than others.
Day four: October 17, 1978. “They” were going to test me for a lesser known neuromuscular disease, Myasthenia Gravis. As one nurse said, “If you have to have one of the horribles; this is the best to have.” She didn’t understand that horribles can’t happen to a young vital woman of thirty five who is the mother of a 2 (almost 3) year old son, and two teen age daughters. The family was carrying on at home as well as they could. My husband and sixteen year old (who was driving) had stepped up and were taking care of the house and the younger children. My husband would come to see me daily, but the children only on the week-ends. I talked to them daily by phone. My son still remembers that I had recorded some of his favorite books on a tape recorder so that he could hear them in my voice while he turned the pages. I still felt that I was missing so much, and I was not there to comfort them (about me).
The doctor explained they would do a double blind procedure for the final diagnosis. They would inject me twice; one would be saline, and the other tensilon. The double blind procedure would keep any psychological factors from coloring the result. Even the doctors wouldn’t know which hypodermic had the medication and which was saline. The theory is that the doctor administering the shot wouldn’t be able to convey anything even by a flicker of his eye so that the patient in turn could react. There is a lot to be said for psychological effects. If I had a reaction, I had Myasthenia Gravis; if I didn’t have a reaction….I didn’t.
The doctor injected my left arm. I felt nothing. He tried to find a vein in my right arm for the second injection and missed. We were all nervous. It felt to me that we were all in it together. They had treated me as a team, and it seemed that they really cared what the diagnosis might be. The needle finally went into my vein. Seconds passed; everyone was looking at me. All of a sudden, I felt energy and strength flowing through me. Almost like a shot of adrenalin. The doctor noticed a change in my affect, and asked me to describe what was happening. I told him I felt better, less weak (all the tests had debilitated me); and almost like a rush of energy. He looked first at the nurse; a look passed between them. Then he looked back at me; “The test is positive; it appears you have Myasthenia Gravis.” Feelings flooded through me; relief that the tests were over and I wasn’t crazy, deep fatigue as the tensilon from the test wore off, excitement because I realized from having the medication that there is treatment and I might feel better, and a deep penetrating fear as reality set in and I wondered what lay ahead.
The depression didn’t come until the nurse woke me up at midnight to take the medication that I would have to take at least three times a day for the rest of my life (barring remission). At that time, I rarely even took an aspirin; I was anti-drugs. However, they told me I had to take it in order to keep breathing, and it sure beat the alternative.
Lesson #5: Being diagnosed and knowing what you’re dealing with is easier than the unknown even when the diagnosis is the last thing you want to hear or: The truth will set you free.
Lesson #6: Being physically ill is less threatening than being mentally or emotionally ill (Socio-cultural conditioning, perhaps)?
Lesson #7: Being dependent on chemicals beats dying.
No wonder I was so tired at the end of this day; a lot of growing. As I went to sleep, I didn’t realize that this twenty-four hours, more than any other I had experienced except perhaps the birth of my children had completely changed my life as I’d known it thus far.That night, it was best that I didn’t know what M.G. meant; the struggles and limitations that would be placed on me by the disease. When I asked a nurse, “What is it? What causes it? What does it mean to me?”; she brought a textbook to me. There was an incredibly short paragraph.
“Progressive muscle wasting, facial muscles may become paralyzed; patient may have trouble breathing at times and may have dysphagia (choking on food or own saliva). Activities limited. Progression rapid with death occurring generally within 5 to 7 years of diagnosis.”
There it was! My own mortality! We are all faced with it sooner or later. “But I don’t want to die” I screamed silently in my mind. Dr. Khan breezed into the room. “Oh, don’t look at that” he told me after he picked up the book and looked at it. “It was published six years ago. We know a lot more about MG now. If you must read about your illness, only read the good parts.”
I took a deep breath; I decided to put all my eggs in one basket and trust him. It beat the alternative of believing the book.
However, he then gave me a big dose of reality: “You should never work full time again; any time you spend working takes away from the end of your life. You should not do heavy housework; you must take extremely good care of yourself. If you become too fatigued you can stop breathing; your lungs and heart are muscles and the crux of MG is muscle fatigue. No strenuous exercise or driving long distances.” The list seemed to go on and on. I began to tune him out, but his next words brought me back to reality.
“You will have to have surgery; your thymus gland removed. It is behind the sternum just above the heart. It will be like open heart surgery except of course, the heart is not touched. You will be in intensive care after the surgery; it is major surgery; you will be on a respirator; you won’t be able to have much pain medication because it weakens the respiratory system. You must have this as soon as possible to arrest the progression of the disease.” My mind reeled; my glance fell on a picture of my family and I felt a longing. I desperately wanted it back the way it was; I did not want to go forward. I was afraid; afraid to have the surgery, and afraid not to.
Lesson #8: Sometimes life is no fun, and choices don’t seem like choices at all.
Nov. 10, 1978: I was admitted to Baylor Hospital in Dallas, Texas for surgery. The seven hour surgery went well. My thymus gland was growing up into my neck, and eventually would have choked me. I was only in the Intensive Care Unit for four days; a record they told me. Maybe that’s because I desperately wanted out. The nurses were young, and it felt like they jerked me (probably not true) when they moved me. It was obvious they had never been in there. They kept popular music on all night—probably to keep themselves awake, but I got no rest. After I was moved to my room, my husband stood guard outside my door and wouldn’t let anyone wake me while I took a long needed 3 hour nap. I left the hospital 6 days later on the day before Thanksgiving.
Lesson #9: God cradled me in the palm of his hand and did for me what I could not do for myself.
At home, I wasn’t able to do much more than bathe and dress myself (sometimes even needed help for that). Eventually I could fix something light to eat. I mainly sat in the rocking chair or lay on the couch. I reminded myself to be grateful that I could walk between the two. One day I found myself alone in the house and the front doorbell rang. I went to the door before I realized that I would be unable to open it (my sternum was broken and I couldn’t use my arms for anything that took much effort until it healed). Recovery was difficult; I missed being active; I missed working; I missed holding my then three year old on my lap. I grieved the loss of my physical abilities.
December 21, 1978: My thirty four year old brother died unexpectedly. The loss staggered me; grief added to grief. Emotional stress is as dangerous to MG as physical stress. The disease began to progress again. Dr. Khan suggested a new procedure: plasma exchange. I would be hooked up to a centrifuge. My blood would be pulled out of my right arm, the plasma separated out, and the rest of my blood returned to me with a donor’s plasma. At first, I had this twice a week; the procedure takes three hours with testing, blood-work after (to make sure I had enough of the correct components returned to me). It is not a painful procedure, but sometimes it left me weak, dizzy, nauseated, and I still have the scars from the large needles they had to use, in the crook of my elbows, my hand, and my wrist; I suppose some might think I was a “junkie.”
Initially I was in the hospital for six weeks, with 2 treatments per week, and week-end passes to go home for 24 hours. Then I progressed to one treatment per week, only checking in overnight. Next I drove myself to treatments in the morning and came back at night. It was slowly beginning to work, and I could even tell I had had a treatment because I would have some energy afterwards. I had 36 plasma exchanges over a year’s time. It became so routine that my three year old, when asked where his mommy was, said; “Oh, she’s getting her blood changed.” (You know, like “getting her hair done).”
Lesson #10: You can do anything you have to
Lesson #11: When something is commonplace; it is too easy to accept it as normal.
One of the risks of plasma exchange is liver damage due to the large amounts of heparin (an anticoagulant) which must be given while on the machine. (The machine can be compared to those used in dialysis). I spent most of the next year recovering from the liver damage (rest is the most important treatment) after I had to “be taken off the machine” due to the liver enzymes being too high. Little did we know in 1978 that I had contracted Hepatitis C from the donor plasma which at that time was not being screened…..for anything. I was lucky to only get Hep C.
Then I began a new treatment of Dr. Khan’s; a research project he called “Transfer Factor.” Simply this involves a donor giving white cells through blood donations which are processed and then injected into the patient. The principle is to increaseimmunity to fight viral infections which can weaken the immune system. No one knows yet (I don’t think) why or how MG begins; it is believed that it is not hereditary and is rare to be found in two people in a family system although my father was diagnosed with it almost 15 years after I was. Usually young women and older men have it; although some babies have been born with it. One theory holds that it may be a virus that lingers on (I had one for six weeks when I was 25) and then the body’s own immune system begins to attack itself; hence an autoimmune disease. My doctors also believed that my pregnancy with my last child, born in 1975 may have triggered the dormant disease. I had been told that Myasthenia Gravis itself will not probably not kill me, but a secondary infection could. The transfer factor was to offset that possibility.
Spending time hooking rugs, watching T.V. care of my children and various household tasks while I was readjusting led me to know that was not enough for me. I began to take a class here and there, and was involved in my own personal therapy at a family counseling center seeking direction in handling the loss of my brother and the loss of my physical ability. As I was around the center, taking classes, volunteering a few hours a week; I realized I wanted to do this type of work; to be a therapist.
Through the services of Texas Rehabilitation Commision and the Handicapped Student Services at a junior college near my home; I began college. It was truly a miracle that I could attend school full-time; I was very grateful and motivated. I graduated with a Bachelor’s of Social Work, and went on to complete a Master’s in Social Work at University of Texas at Arlington, both within just five years. I practiced for fifteen years in family therapy; specializing in play therapy for children as well as marriage counseling. I taught Social Work and Chemical Dependency classes at Eastfield Junior College in Mesquite, Texas. A time of Crisis actually turned into a learning experience for me. It felt good that I felt able to help others through my education and experience.
My friends were very important to me, giving me strength and support. A self help group I belong to brought me meetings in the hospital. My family worked overtime to help me also. My sixteen year old sister spent nights with me in the hospital. The richness of my life encompassed that I knew what I had to deal with; knowing my limits and living within them; not struggling to maintain a normal pace. I felt sad sometimes, and mad a lot of times when I couldn’t do what I used to do or something new I wanted to try. However, I learned to just find something I COULD do and let go of the rest.
My children are grown now; successful adults. I have four grandchildren (and am hoping for more). My daughters and son are particularly solicitous of me although I have been very independent for a long time. I think it is because they lived through the trying years of diagnosis and treatment. No, not even one became a medical doctor; although one daughter is a doctor (of psychology).
Myasthenia Gravis is sometimes called “The Mysterious Disease nobody knows”. It only strikes one in 12,000 and is extremely difficult to diagnose. Many people may have it without knowing it. I am grateful that I know what I have, and that I learned to live with it. I have had it now for 30 years. Once I asked Dr. Khan what my life expectancy was, and he said, “With Myasthenia, you can expect to live 60 years.” At the time (you know how young people are) that was satisfactory to me; now that I am 66, I intend to live much longer, and as of now, I am healthy without the other diseases of aging.
Lesson #12: Live One Day At A Time