Hope Is Tenacious in Our Journey with Myasthenia Gravis

Hope is an empowering word with an ambiguous interpretation. For each person, hope might look just a little different, but its crucial need in our lives remains integral. 

When I was first diagnosed, I thought of myasthenia gravis and the emotional, mental, physical, and even spiritual journey it wrought as linear, something to process, grieve, and then accept as a one-time hurdle I had to overcome eventually. But I found that it’s a continuous cycle that tiptoes on myriad precipices, sometimes bringing about a daily battle between who I was, what I now endure, and who I long to be again. And yet, the delicate fiber that holds it all together is hope, a thriving wellspring that whispers succor in the darkness and shouts victoriously in the light that I can indeed finish this race before me. 

I first found hope in a crowded hospital waiting room as I fearfully tried to reconcile what was happening to my body as I became weaker, waiting and praying for help. I found the tenacious gift again and again in endless ICU rooms as it competed against the grating blip of cold machines and strange surroundings.

I found hope’s ever faithful, irrepressible spirit while I was sitting on a hard bench in a cavernous hospital lobby, waiting for the impossible news of what was to come. 

Hope bent low to my side as questions and worry swirled in my mind. I felt her gently sit beside me, her quiet, fierce fortitude beckoning me to stay a while and rest. 

She reminded me that day, as I sat alone and afraid, that I am more than this moment. She lifted my chin and whispered hope beyond my fears. 

She met me, right where I was, as I was, with nothing to offer her. She came with generous love and courage. Because of her, I found the strength to get back up on shaky legs once more. 

Time and again, hope became the buoy to which I clung so desperately as the new became the familiar and the fear became a raucous companion. 

We don’t know what our futures hold, but hope promises to meet us there, in the stillness of the night, in the fatigue of diagnosis, in the isolation of loss, in the turmoil of misunderstood hearts and loneliness, in the struggle to simply press on. And when we become weary in the journey and all hope feels lost, the tenacity of an enduring hope found in the bonds of our shared MG community become our oasis in the desert, a place of comfort and rest.

Please don’t be afraid to let someone know where you are and to seek out a compassionate ear, a fellow warrior who has hope to share. Even the strongest among us becomes depleted once in a while. But that’s the beauty of a shared hope: It’s a gift that can never run dry. 

To all who are weary and need hope once again, please know that you are not alone and that you matter. 

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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.