Living with muscular dystrophy at 50 makes death my shadow partner

Photo credit: Courtesy of Alice Wong – Eddie Hernandez Photography

I I am an Aries through and through – bold, ambitious, fiery and confident. Today, March 27th, I am 50 years old on this planet, something I could never have imagined. As a young child, I was diagnosed with an unknown type of muscular dystrophy and doctors told my parents I would not grow up. My immigrant parents cried when they heard the news. Although this news was devastating, they never treated me like a fragile egg about to break. In fact, as the firstborn of three girls, I had a lot of responsibilities and expectations that only reinforced my Aries tendencies.

Although my parents were always supportive, I knew from a young age that my life would be different. And because they didn’t sugarcoat anything, I had a clear sense that my time was limited. In my bedroom, with a creepy clown ceiling light hanging above me at night, I wondered in my vivid imagination how I would die – would it be a slow and painful death? Would it be a quick one, via a medical emergency? Knowing that my muscles were getting weaker and weaker, as I had trouble walking as a child and breathing as a teenager, kept death ever present in my mind. Believing I had no future shaped me in ways I still process today.

Birthdays have got me thinking, especially this year. I recently looked at a photo from my 40th birthday party and couldn’t recognize myself. I wasn’t wearing a BiPap mask because back then I only needed to use it intermittently to assist my breathing. I wasn’t wearing a belt across my chest, which I now need because my upper body has weakened. I remember being exhausted after the party. When I got home, I immediately put on my mask and turned on the ventilator. It was a sweet relief. Shortly after, I started using it for longer periods of time until I started wearing it day and night. I didn’t see it as a failure of my body, but as part of the inevitable descent toward my final goal.

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Two years ago, I experienced a series of horrific and traumatic medical crises that left me disabled in intensive care for weeks. I was unable to speak and was unable to swallow, eat, or drink due to a tracheostomy, a tube down my throat that is connected to a ventilator. This resulted in me needing a feeding tube that goes into my stomach and intestines. During my hospital stay, I also lost feeling in my bladder, so I now urinate through a catheter four to five times a day. Those weeks were like a fever dream—I couldn’t sleep for days because every time I closed my eyes, I feared I would never wake up again. I was in tremendous pain and could only communicate by whispering words to my sisters or scribbling on a notepad. In the few moments I could write, I sketched instructions for my sisters on what to do if I didn’t make it. Would I die like this? It was my next brush with death in a series of many, but I lived to tell another tale. But I was determined to fight through and live to see another day.

I am still adjusting to life in a new body and a new way of life that requires a significant amount of resources, supplies, and machinery to stay alive and avoid institutionalization. The amount of care and administration that comes with being disabled in America has also taken its toll—the additional in-home care I must now pay out of pocket is $840 a day. With donations from my GoFundMe campaign dwindling, managing and directing a team of caregivers for my daily activities requires a lot of forethought and clear communication. Being disabled in a non-disabled world is precarious and requires constant adaptation. I have morphed into a new cyborg form that still has a voice, breath, and a will to live.

Now that my body is down, I am at the peak of my powers. I have never been so happy, free and determined in what I want to do. Now that I am turning 50, I have mixed feelings. I am terrified of what lies ahead when I turn 60. Will this be my last decade of life? Maybe it’s OK that I can’t predict what will happen or what the future will bring, because no one can. What I will do is intentionally spend my time, energy and work with the people I care about. I will host dinner parties, make chili crisp for my friends and spoil my cats Ernie and Bert. I will cherish every breath forced through my ventilator and be grateful to be able to sleep a rare night without pain. And most importantly, I will try to rest and take care of myself.

Death remains my intimate shadow partner. He has accompanied me since birth and always hovers close to me. I know that one day we will finally dance together into the ether. I hope that when that time comes, I will die with the satisfaction of a life well lived, lived without regret, joy and love.

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