To the Rare Disease That Entered My Life Uninvited, I Have This to Say to You


Dear congenital fiber-type disproportion myopathy,

You might have others convinced you are a genetic condition that causes weak muscles and disability, but I know the truth about you. You are a thief.

Before I even knew your name you began your crime. I was 8 years old, and you had occupied the cells of my newborn sister, Chavon. Her weak cry, like a kitten mewing, was a quiet alarm notifying me you had entered my life.

Every day was a challenge for her, from eating and breathing to mobility. A little lady who would grow up to become my best friend, she persevered in spite of every burglary. She finished college, started a doctoral program in bioengineering, and traveled the country, but you weren’t finished with us. The biggest heartbreak of my life was in 2012, when you stole her from me altogether.

Your stealth was apparent in 2011 when my son Richie was born, weak and floppy, with a cry like Chavon’s. We still hadn’t identified you, but there you were. From Richie, you stole respiratory function and muscle tone. The tracheostomy, back brace and feeding tube are the footprints you left behind. Richie helped us to track you down and learn your name.

You are crafty and merciless, but we have many jewels you didn’t make off with. The countless moments of joy when something new is accomplished, the victory of Chavon’s and Richie’s first wheelchair rides, the spark of intellect that comes from sitting still and observing – these are things you couldn’t reach.

unnamed
Chavon at age 5 (1990), Richie at age 3 (2014)

Despite your crimes, I forgive you. Even thieves have souls, and having a soul means you have something to offer. Your intrusion into my life,and the lives of my loved ones has allowed me to feel more deeply; I appreciate the little things. You have ignited my sense of compassion and justice and made me notice and advocate for people who are often overlooked.

One day, I want you to pay for your crimes; through research, I want to vanquish you from the earth and prevent you from wreaking havoc on the lives of others. Until then, I will acknowledge your presence and keep a watchful eye on you, knowing no matter what you have stolen, I will always be richer for it.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


Find this story helpful? Share it with someone you care about.