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How I Have Embraced Life With Myasthenia Gravis

For the most part, I have managed to master the art of living with a chronic illness, but myasthenia gravis never fails to remind me that I have not completely conquered my body’s attack on itself. It is a sobering thought if you really meditate on it: the one thing you thought you could undoubtedly trust and never in a million years thought would betray you, did.

 

The relationship I have with my body has been a rocky one, and we will always be bonded whether we like it or not. We have embraced one another, let down one another, resisted one another, supported each other, have learned to live with one another. We have our good days and our bad days, but my body and I will always agree on one thing: we are not perfect, and while we both have made mistakes, at the end of the day the gratitude and love that is shared tends to outlast any negativity that has been brought forth by this disease.

This past Independence Day really resonated with me; it forced me to think about what it truly means to be free. Today I’m on the couch attempting to accept the physical aftermath of the festivities, waiting patiently for the energy I had a few days ago to resurge. The anxiety grows as all my “to-dos” pile as each hour passes, and despite living with this illness for 11+ years, letting go of what you cannot control never gets easier.

My mind, my body and my spirit are so intertwined with one another, and whether that is being an INFJ personality type (the rarest of them all), or my rare disease forcing me to have these deep connections, I try to recognize this as admirable rather than something to be ashamed of. A supervisor of mine recently told me that she has the utmost admiration and respect for the way in which I self-advocate and value the practice of self-care. Her support reinforced the way in which I carry myself and I hope to continue inspiring others to do the same.

So today as I lay here, earlier frustrated by my body’s inability to tackle the day, I am now in a peaceful state of mind knowing I am practicing what I preach. I may depend on others from time to time because I have to, but that doesn’t take away from me being an independent woman. I may be a prisoner of my body at times, but I have the freedom to choose the way in which I react to its infidelity. I may approach things differently compared to the norm, but that allows me to inspire others to be less judgmental, to think about things in a different light, to ultimately see the good even in the darkest of times….and that to me is where bravery ultimately resides.

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Thinkstock photo via OGri.