After the Diagnosis, Is My Life Over?
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A week or so after spending three days in the hospital, I found out I had myasthenia gravis (MG).
My symptoms were raging. They included severe double vision, slurred speech, and extreme fatigue, and eating, chewing, and swallowing were next to impossible. All of it was terrifying.
Getting up to go to the kitchen, bathroom, or bedroom was exhausting. Watching TV was a struggle, although I wasn’t even moving. “Brain fog” was new to me and mystifying. I was faced with uncontrollable symptoms, and everything that made me “me” was in utter disarray. I’d never experienced such loss of control of my body and every aspect of my life.
As the only pastor of a large religious congregation, my life’s work involved many long hours with fairly inflexible ministry commitments. As it often is with type A people, the calendar was always filled. Plus, there are always emergencies and unexpected crises. Being on top of “my game” was nonnegotiable.
I needed to be able to speak clearly and effectively both in public and in private. I needed to drive to visit people in their homes and in the hospital. I needed to think clearly. Reading, preparing, studying were out of the question. At best, prayer was two or three words of crying for help. These things were on my mind as the MG battled within me.
Physically, emotionally, and spiritually tired, I was angry, irritable, isolated, confused, and mostly afraid. My life had been laid out with plans to retire in seven years; now, trying to anticipate the unknown and unplanned after the diagnosis resulted in despair.
Sad and grieving alone that day in our family room, I remember sitting with my head in my hands, saying aloud to myself, “Is this it? Is my life over? Is this what the rest of my life will be like?”
Eleven years later, the answers are all no! No, myasthenia gravis did not end life as I knew it, nor has it ruined my future. What happened? What has kept me going was an attitude that has seen me through the many realities and struggles of my life.
Like many growing up in the post-World War II 1950s, the recent history of war, battles, and the people involved captured my attention. In particular, I recalled the late Winston Churchill, the U.K.’s wartime prime minister, and his famously inspiring words to the people of England being attacked mercilessly: “Never give in!”
They didn’t. Nor will I.
I have not and will not give up because of MG. I may have to relearn things; I may have to adjust; I may have to set limits that go against my nature; I may have to accept what I cannot change, but I will not give up. The “never-give-up” attitude and approach to life, living, and MG will continue to see me through. It will feature in the name of my column.
While we all experience our myasthenia gravis differently, we have much in common as we endure the many challenges of living with MG. As I share some of my experiences and the insights gained through them, my prayer is that they will be useful to you and encouraging.
Never give up!
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
Comments
Anita Moyse
I am glad to hear you are not allowing Myasthenia to control you, but that because of the coping mechanisms you have created for your life style, you are "in control". I have lived for 41 years with Myasthenia, and the key I found is that you develop a lifestyle that works with this life-long disease. Just making sure I keep healthy through proper eating and taking medications as prescribed (for me it has been Mestinon). PACING my lifestyle was a great factor. If I had a "down" day, I would give in and rest..to allow myself to recharge. Sometimes it was for a couple of days, and yes it did interupt my lifestyle, but I learned that this would work for me instead of "pushing myself". Keep safe, and keep healthy.
Raymond Krupansky
I was diagnosed on September 2, 2010, and after working for 37 years I thought my life was over, or was it? I did file for SSD because I could no longer work. For 4 months I had daily pity parties. I was only fifty-five and I had been married not quite 7 years and I was supposed to be supporting my wife who became disabled shortly after getting married in Nov. 2003. After four months of feeling sorry for myself I finally took my wife's advice and decided I needed to talk to someone. It was the best thing I could have done. I was given coping skills on how to deal with my "new normal" I was also told to stop stressing over things I have no control over. Thanksgiving of that year with some help from my kids I cooked Thanksgiving dinner and later cooked Christmas dinner. I did that for years along with baking pumpkin rolls and cheesecakes. Eventually I started making homemade spaghetti sauce and meatballs for an annual Valentines dinner at church. I also did Mother's Day and Easter breakfast at church. So, did I let MG defeat me or did I defeat MG?
Gary L Stephens
It was about 4 years ago that I was diagnosed with MG. Lots of testing but a blood test confirmed the diagnosis. The ups and downs were very severe. Not sure when I would have double vision, the pills for MG were sometimes worse than the disease, especially the diarrhea. Once in the hospital my MG was so bad that I could not breathe.
Next day they increased my dosage and things got under control. MG is supposed to be forever but several months ago my symptoms became less and less. By accident I forgot to take my pills and several days went by without symptoms, no double vision. It's been 6 weeks since I took a pill and no double vision! Sometimes late in the day I notice that my eye is drooping but it goes away with sleep. Keep the faith and things will get better!