I come from a family where I have lost two family members to a terminal, genetic disease. Myotonic muscular dystrophy is currently incurable. The disease is written into a person’s DNA from birth. I may live to see a cure discovered, but my affected mother and brother did not.
I am genetically unaffected by the disease; my mother did not pass it on to me. But I am affected by the disease in that it has shaped so much of my life as a sibling and daughter of affected family members.
Even though I’ve been around two family members with the disease almost all my life, I can’t begin to fathom the types of emotional and spiritual challenges of caring an incurable disease present from cradle to grave unless a cure is developed before the clock runs out. And while I could guess at some of my parents’ emotions surrounding my brother, I went through that phase of live shielded by the idealism of youth. For many situations, I don’t know what it is like.
But I have learned some lessons in life around terminal disease.
There are moments life is sad. In fact, there are moments when life seems unbearably unfair, intolerably disappointing, and insufferably inconvenient. There isn’t anything to make easy sense of why a child is born with certain limitations, the most glaring of which is life span. And in my personal experience, there are moments when that lack of explanation creates such a crippling anger that rational thought flies out the window and something breaks on the wall.
If I had to think that life was fair in order to keep living, well, I’d roll over and die. But, simply, life doesn’t have to be fair. I don’t have to believe life is fair, and honestly, to live and live well, I don’t have to be able to explain why things happen or think I deserved what I got. If I got stuck on thinking life had to be fair or that bad things only happened to bad people, I’d be so angry at God and fate that I wouldn’t have time for anything else.
So, that’s the first and perhaps most important lesson I learned from life around a terminal disease – life isn’t fair and I don’t need it to be.
My favorite book of the Bible is 1st Corinthians, a typical favorite because of verses about love. My second favorite book of the Bible is the book of James, a common choice for taming the tongue and restraining anger. My third book carries less affinity with the general population – the Book of Job. I love the Book of Job. I find solace in it. Part of Job’s life sucked. Lots of unfair things happened. He lost loved ones. He didn’t deserve it. It wasn’t fair. And God loved Job. God loved him. Bad things happened and God loved Job. Job is one of my favorite Biblical heroes, both for his ability to endure and the unavoidable truth that he suffered a tragedy he didn’t bring upon himself.
I can’t give you a solid argument of why bad things happen to good people, but I can give you a Biblical example of a good person who prevails past bad things through reliance on His Creator. There are times that is good enough.
One of my favorite non-Biblical books is by Malcolm Gladwell – David and Goliath (yes, I did say non-Biblical and its title is a Biblical allusion…). Gladwell’s main premise of David and Goliath is that sometimes a perceived disadvantage instead serves as a catalytic advantage which produces accelerated growth and greater victory. David was smaller than Goliath, and this disadvantage meant he had to rely on something besides traditional battle tactics reliant on strength. His weakness becomes a strength when he utilizes a projectile and leverages more force through a sling. Gladwell also uses examples of people who lost a parent while young. For many, this is a crippling disadvantage causing poverty, depression and lifelong cascading effects. But for some, for some, this creates an indomitable resilience. Some are made greater than they ever could have been before by facing adversity and persevering through it.
I prayed almost every day of my brother’s life that he would be cured. Those prayers were never answered. But that doesn’t mean I was cheated. I wish my brother’s life were longer, I wish he felt less pain, but I’d never wish away the way he was born. I wouldn’t change him, not because he was perfect or healthy, but because he was Beautiful. He was Blessed. Through the adversity, the pain and the shortened life, my brother was perfect the way he was.
That sounds like a cliché doesn’t it? It sounds like my psyche is protecting me from the pain of wanting something I couldn’t have. Perhaps it is. It may be a cop out to cite fate in face of the indescribable.
But I believe my brother was as he was meant to be – and I thank God that I got the chance to love Dustin. My mother couldn’t avoid carrying myotonic dystrophy, and she didn’t live long enough to see a cure – and I thank God that she had the chance to love me. My mother’s love will carry me through. It isn’t fair I lost them. It isn’t fair that children are still born with this disease likely to be buried by their parents. But it is a blessing that those children are here. They will be loved in ways that make the people who love them more than they could have been without the gift of that child.
It isn’t easy to be in a family affected by myotonic muscular dystrophy, and God knows it can’t be easy to be affected by myotonic muscular dystrophy. So we weren’t made for easy. So we weren’t meant to live without challenge. So we were meant to be built with resilience because we were gifted with obstacles. I’m okay with that.
Have I ever read the Book of Job as the capstone to my self-pity party to feel better by comparison? Yes. It worked. I know I am better by the experience of loving and losing my brother. I know the love of my mother is one of the greatest gifts I’ve been given, even if I lost her when my first born was 3 months old. I go on living. I try to carry their spirit into my next day, to teach their lessons to my children.
It’s sad and unfair that some will die younger than others, but I am forever grateful for being in the family I was given and getting the time I did with those I loved.
It was worth it.