MG changed my relationship with God, and then changed it back
Today, I can thank God for testing me while still admitting the test hurts
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When I was diagnosed with myasthenia gravis (MG), the flare was so severe that I could no longer pray the way I used to.
As a Muslim, I pray five times a day, and the prayer ritual includes standing, bowing, kneeling, and getting back up several times, but my body simply could not do that.
It was confusing to me to not be able to practice my faith the way I had always known it. When your body prevents you from doing something that connects you spiritually, the limitation can feel much bigger than muscle weakness. MG interfered with my ability to walk, breathe comfortably, and use my muscles, but it had also entered a space I thought no disease should be able to reach — my relationship with God.
MG did more than affect my ability to pray, however; it made me angry at God.
It may sound selfish and unfaithful to admit, but the feeling was deeply rooted in my heart. Why me? Why now? What am I supposed to do with this? Where is the brand book? I have the Quran, the holy book of Islam, but there is nothing in it that explains how Sarah is supposed to live with MG. So what now? I wanted to ask these questions to God, to myself, and maybe to anyone who could give me an answer.
My anger was caused by grieving the healthy life I thought I was supposed to have. But feeling angry also made me feel guilty and pushed me even further away from my faith. I cannot fully explain how disconnected I felt from my faith during that period. I felt left out and somehow marginalized by life itself.
I know people face circumstances much more dramatic than mine. People lose their lives, live through wars, hunger, and unimaginable suffering, while I was merely asking, “Why me?” But pain does not always give us that level of perspective. I was blinded by anger. I was tired, exhausted, confused, and grieving a version of myself I thought I had lost.
Finding my way back
I have not completely found my way back to my prayers yet, at least not in the way I would like to. But strangely, after years of living with MG, I have never felt more connected to God than I do now. Maybe my connection simply changed.
I feel blessed when I realize that I can walk. I am grateful that I can speak, express myself, write, work, create, love, and succeed in other areas of my life. I am grateful for the people around me and for every part of my body that continues to cooperate. Even knowing my MG better has become something I appreciate. The disease is still unpredictable, but I am not meeting a complete stranger anymore. I know some of its patterns, tricks, and warnings. I have become less surprised by it, and therefore a little less frustrated.
What started as a huge tempest in my life is slowly becoming a sea that is more manageable. The waves are still there, and sometimes they are violent, but I have learned how to navigate them better. Perhaps my personal and spiritual development has been part of this. My faith has not been strengthened by pretending I was never angry or questioning. Maybe it grew precisely because I went through those questions and slowly found gratitude again.
Today, I can thank God for testing me while still admitting that the test hurts. I can be grateful for what this experience has taught me without pretending that I am grateful for every symptom. I do not believe MG has brought anything good to my body. Physically, I would happily live without it. But mentally and spiritually, I hope it can continue to be a vector for growth.
MG changed the way I pray, challenged my understanding of faith, and made me ask questions I never thought I would ask. I still do not have a brand book that explains how to live this life. Maybe I never will. But I am learning slowly that faith does not mean having all the answers. Sometimes it means continuing the conversation even after spending years asking, “Why me?”
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.
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