Like most chronically ill people, I often get the line, “I don’t know how you do it.” To be completely honest, nor do I. I just do exactly as healthy people do. I wake up, get up, survive, and go to bed.
On some days, I have an emotional breakdown in the midst of trying to survive. Some days I am stuck in bed for hours. On other days, I am so incredibly frustrated with my health that I lock myself in my room and speak to no one. I stare at my medication box with utter dismay, and every person with better health than me is seen as the enemy.
I listen to songs about lost love and relate to them based on my health. I lost my health. Good health broke up with me. It took its things and moved away. I miss it, and I am heartbroken. But you cannot let your entire life go to smithereens just because of a breakup, can you? That is not how being a grown-up works.
Life is all about adjusting to the challenges being thrown at you and making it all look effortless. We all know that it is not effortless, but it is nice when it seems that way. You might think my battles with my health are always a natural, effortless reaction, but in reality, it is an absolutely hopeless struggle. The reason I carry on with a smile on my face is that I have fallen in love with the concept of being alive.
Every single one of us has a finite number of years on this amazing planet and then we are gone. Everyone. Forever. How can you not fall in love with the endless possibilities that are hosted by that idea? I fell in love with life before I fell ill, and no one called me brave then. Being alive is incredibly difficult for everyone. So, loving life is something that should be acknowledged and praised more often and more profusely.
“There are so many ways to be brave in this world. Sometimes bravery involves laying down your life for something bigger than yourself, or for someone else. Sometimes it involves giving up everything you have ever known, or everyone you have ever loved, for the sake of something greater. But sometimes it doesn’t. Sometimes it is nothing more than gritting your teeth through pain, and the work of every day, the slow walk toward a better life.” –Veronica Rath
I am slowly walking (which is funny because I have a muscle disease and always walk slow) toward a better life. I wake up each day filled with the slightest amount of hope that today will be better than yesterday. The ones who seem to be the strongest are sometimes the most fragile. It breaks my heart every time I see the tremor in my hand as I reach for something. It hurts my soul when my legs start shaking as I try to descend stairs. The ridiculous increased heart rate I acquire when I do anything remotely active makes me feel like crying in pubic — but I do not.
I am persistent because I do not give up. I am trusting for believing each day will be better than the last. I am a fool for loving life despite everything it has put me through. Most importantly, I am happy. I may also be fragile, weak, and incredibly scared. My future is not something I can openly discuss because I do not know how much time I have left until I am admitted to hospital again. I live in constant fear, but the thing chronic illness has taught me is that just living is enough. Life is beautiful, never stop fighting.
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.
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