My mother and brother were born with and died from the same rare, genetic and yet incurable disease, myotonic dystrophy. (Read more about it here.) My brother, Dustin, passed away in 2002, 13 years ago. When he was born in 1989 and survived to leave the hospital almost a year later, he was considered a medical miracle, a “1 in a 1,000,000” type of child to be a survivor.
The upside to a child with congenital myotonic dystrophy is that if they survive, they often continue to grow stronger at a progressive pace. I grew up with my brother constantly passed expectations on his life span, overcame many situations where his doom seemed imminent and as medicine evolved so rapidly in the 1990s, it was like Divinity was on his side and that his continued existance was a series of constant blessings. I was 3 when Dustin was born, and in my mind, he was born just the way he was meant to be like my mother told me. His disease seemed like – now this is the mindset of a child – but his disease seemed like a gift to put in our family in order to show us God’s true love and to help other’s see God’s work through Dustin’s life. I’d still agree with that sentence if it said Dustin was the blessing, but I said I saw his disease as a blessing.
I remember the first time I was at a fast food restaurant and they asked my family if we wanted to donate money to help cure muscular dystrophy. I was probably 6 or 7. I looked up at my mother “She means the disease Dustin has?” First, I didn’t know enough people knew about it for a fast food cashier to ask us about it, and second, I couldn’t figure out why someone who had never met my brother would want to take away what made my brother special.
I thought that if she could meet Dustin, she wouldn’t want to cure this disease, she would want to let it exist so that God could make more children like him to bless the world with. You see, my brother was winning and I thought I was the luckiest sister because I had a brother who should be dead, but instead was living a life where he could smile, play puppets, and brought positive attention to my family in a way my healthy appearance didn’t. My favorite thing in the world was my brother. I was proud of him; I was lucky to have him. I didn’t envy anyone with a healthy sibling, and while I wished Dustin could learn to walk or start talked, I never wished I had a healthy brother instead or regretted Dustin’s genetic condition. I was a child. I didn’t know any different.
One time when I was in college, I spoke at church after Dustin passed away and talked about how it was such a blessing for God to have put my brother in my life just the way he was. That was always my thought pattern; I thought that without thinking. It was just the way life was. A middle aged friend of mine came to me after I spoke, and she said “Darcy, I’ve known you a long while, and I know what you said is true. But my mother had a special son who died very young. Did you ever think it was a tragedy or not a blessing that your brother was born the way he was?”
I shrugged my shoulders and answered a little too quickly: “No, I’ve always known he was born with that disease for a reason. We were meant to get to love him while he was here with us on earth.”
She smiled at me with pursed lips, perhaps thinking my answer was trite. “Well, your family is lucky to think that way. Mine didn’t. My mom was angry and sad both from my brother’s birth and still years after his death.”
I was taken aback. If I could have admitted to myself then, I would have acknowledged my anger at God for having taken my brother and shared the emotion with her. But because of the pace of medical “miracles” Dustin experienced in my youth and the seemingly invulnerable youth my brother had as a child who lived on the brink, I honestly don’t think I ever thought of the way my brother was born as tragic.
I swirled her question around in my head that night, and the day after. I can still hear her ask it if I try to recall that day. And I’ve come to realize something over the years. We were the lucky ones. Dustin was probably more than 1 in 1,000,000. I’ve never met in person anyone like him. I’ve searched online for facebook groups with MMD in the family, and I’ve read about children who can walk and live longer, talking and living a life closer to normal, and I’ve read about children who seem even less severe than my brother and die younger. I’ve read about dads leaving moms because the care was too much. I’ve seen people curse the disease online because it takes their own strength. I’ve never seen anyone thank God for the disease and making their child special.
When I was 7, I might have prayed that way – I might have told God “Thank you for making Dustin the way he is. You have given us a real angel on earth. I know some people think myotonic dystrophy is a terrible disease and shouldn’t exist on earth, but I’m glad you put it in Dustin because it helps me see the world in a different way and makes me a better person.” I think about my prayers as a child. I was grateful for how Dustin made my life better, but I didn’t comprehend his pain, I didn’t think about his lost opportunities. I didn’t know any children like him who didn’t have such a miraculous string of winning in the hospital ER. I didn’t think about what was to come for my mother…
I was interested in neuroscience and genetic engineering in high school thinking it wouldn’t cure Dustin, but that it might make life easier. I was never against treatment, but I would admit that in my younger years I didn’t think people should pursue a cure. I mean, Dustin was the way he was because of the core of his DNA. How could they cure the disease without altering who he was? Didn’t God know that DNA when he formed my brother in the womb? Why would a scientist want to manipulate that and stop someone like my brother from existing the way he was?
My mother passed away in 2011. I remember leaving the hospital with my aunts driving us right after she died. We stopped at a gas station. There was a fire truck. There were firemen. They were holding boots. They wanted money for finding a cure for the disease. I was 25. I fought a swirl of emotions in the car as my aunts donated money to the firefighters and I sat in the car. The went inside to buy drinks. That was the first time I ever donated money to search for a cure. That disease had taken my mother.
That might have been the first time I wished the disease removed from the face of the earth.
Science has progressed a great deal since my brother was born in 1989. Yesterday, I read this article talking about a “New Breakthrough“. I read this line “Muscular Dystrophy is an incurable genetic disease that causes much suffering.” I reread the title: ”
The doctor in the article believes muscular dystrophy is incurable, probably because it is written into the genetic fiber of every muscle cell. But he sees hope for a treatment. I reread the article again and noticed the world “incurable” was used again in the beginning of the article: “This, as yet incurable disease, is caused by a genetic mutation, with sufferers missing the Dystrophin protein in their muscle cells.” It looms on the edge of imagination and possibility that the disease, a genetic mutation written into the very DNA of a person, could be cured. It’s both scary and beautiful. Science may be able to change the DNA of people like my brother and mother and make them… different. Better?
I have a complex reaction to that idea. I donate to MDA research now, but I am much more comfortable with a doctor seeking to treat MDA as opposed to curing it. I was born in 1986 and saw my brother grow miraculously. It was and is part of my personal identity that my brother was born with a disease doctors thought would kill him in before he left the hospital and because God blessed his family we got to keep an angel near us for 13 years and let him bless the lives of others by letting them see a form of life so rare and beautiful. Logically, logically I know people alive today with MMD deserve a cure.
I wish my mother could have been cured. When we were wondering if she would make it out of the hospital alive when she was 51, the doctor said “If she really does have myotonic dystrophy, there isn’t much we can do.” Myotonic dystrophy killed my mother.
I may be able to think myotonic dystrophy made my brother who he was and smile, but when I think “myotonic dystrophy killed my mother” I feel anger boil in my chest and water well in my eyes. That disease took my mother.
Science and technology move fast, maybe fast enough that we see a cure in my lifetime. Maybe that we see a reasonable and healthy treatment very soon.
I do have a hope in searching for the cure – I hope we find it, but I also hope we never regret those born different. I hope we can appreciate those who may not be ‘healthy’ without thinking they have to be ‘fixed’. I pray that in searching for a cure, we don’t devalue lives not lived on the ‘normal’ track. There is beauty in a life lived differently. There are blessings within a shortened life span, and there are beautiful life lessons from those who live the shortened lives that we should never want to eradicate.
I hope for a cure, but more than that, I pray we can appreciate what is and the days we are given.
God bless you and yours in this holiday season!