In 29 years of life, I never met another healthy sibling of someone with congenital myotonic dystrophy, or another healthy daughter from a woman affected by adult onset myotonic dystrophy. My odds were pretty bad, since one in 8500 people are affected by the disease and I’ve seen it estimated that 1 in 9000 people living with myotonic dystrophy experience the congenital version where symptoms are immediately visible and life threatening at birth.
Through building a facebook author page and targeting one single group as my audience – those who have liked ‘myotonic dystrophy awareness’ – I have had the pleasure of meeting others like my family through Facebook. I’d met mom’s of young children beginning to show signs, men who suffer from the disease as adults, and even a family with a boy who had congenital myotonic dystrophy and looks so much like Dustin did. Still, I’d never met another young woman like me – lucky enough to inherit the healthy genes, and unlucky enough to have a brother die from the disease while she was in high school. Then, through the internet and over the ocean, I met Emily – a 19 year old woman who lost her oldest brother recently, lost another brother in infancy. She has a living affected mother and a healthy father.
I looked through her pictures and she looked normal – like me. Yet as soon as I saw a picture of her mother or brother, I knew. The features were similar with the marks of the disease. I messaged Emily and shared with her an article I published about losing my brother and mother (http://quest.mda.org/article/beyond-willpower-caring-brother-and-mother-mmd).
I warned her she might cry from the read, but if I could have read what I wrote after losing my brother when I was her age, I would have lived my life differently and been a better person. After she read the article, we chatted through Facebook. I sent her a beta reader copy of From My Mother, and we shared complex feelings in a way neither of us had been able to do before. We shared with someone who understood because they too had lived it. We talked about our families, the joys, the good moments, the challenges… and then we video chatted as two young women from different countries more alike to each other than perhaps the neighborhood kids we grew up with. And in the video chat, we told each other of the loss of our brothers, how it felt to see the most innocent and good person you know die without a chance of a cure, what it was like to live on with the healthy genes we were lucky enough to get, and the challenges of our faith after outgrowing our hope that our brothers would be miraculously cured.
It was beautiful to see her face as I bared my heart about something many have sympathized with over the years, but perhaps few have understood. We saw each others tears and both healed a little more because of an internet connection and a book yet to be published. It was one of the most fulfilling moments of my life to find Emily and know she will read From My Mother and be better off for it.
Here is some of how we found solace in each other and revealed some tough honest truths:
I was angry at God because when Dustin was alive, I admired his innocence and thought life was better because he was around. I felt special being his sister. I thought God put him in my life for a reason I thought I was lucky to have a brother with a disability because it helped me realize things other people didn’t – to value life more.
When Dustin passed away I remember trying to hangout with my friends in high school. It was hard because I’d seen life be fragile and seen someone I loved die. So many of my friends hadn’t seen that and just wanted to live for pleasure and talked about the next high on their weekend.
I struggled to find meaning after I lost my brother. He seemed more real and what life was meant to be than people who took life for granted.
I remember one night, I prayed and didn’t feel any better by it. I felt angry. I asked God “How could you put such innocence in my life then take it away? Why’d you leave me to deal with all this worthless shit afterwards?” I took one of my brother’s toys, a bead set, and threw it against a concrete wall. It broke.
I just cried on the floor after that.
I felt so hollow – left behind and adrift without purpose.
In public I’d pretend it was all ok – I wanted to seem like an A+ success story. I didn’t want to show the weakness.
I thought I needed to be strong for my parents. They needed me – their healthy daughter – to be happy so they were happy.
I never went to counselling, and I regret that.
That anger welled up inside of me and bubbled at times where it hurt people
If I could go back to being 16-20, I’d go talk to a counsellor and try to resolve those feelings.
I’m not sure I’m over them now, but my anger is less. I just wish that anger didn’t push out and hurt those i loved.
It’s good to talk to someone.
I’m glad you have that.
What you said about being angry etc is exactly how iv felt/feel sometimes
When i speak to you i see so much of myself in you its crazy
I think it would be a rare teenager to go through the type of daily struggle a loss a healthy sibling does. We looked like the normal high school student and probably acted like one most the time, but life is lived differently when you know death sits at the door for someone you care about.
When hour dad mentioned you I immediately wanted to make a connection. I looked at your picture and thought we even kind of looked alike.
That anger I felt when Dustin died, it went deeper. I stopped believing in miracles, saw prayer as less useful, and felt naive as a child.
It was hard to pray anything but “thanks for the good things” and “thy will be done”
I was mad enough at God I didn’t want to ask him for anything again.
I thought he would do whatever God wanted anyway.
I felt lonely in a world set against some from birth.
It took a long time to trust prayer again.
And longer to believe what I wanted mattered to my Creator.
Going to a Christian college helped, but I begin to think that if I was going to make it in life, I had to do it myself.
That feeling moved me more towards chasing success than slowing down to embrace love and compassion.
I made many decisions based more on logic than love and wanted my parents to figure out their broken hearts in the same intellectual, independent way.
So they kind of went their way together, and I went mine by starting a life on my own with my husband where I didn’t see them much.
I was trusting the world more than God.
I still loved him and professed my faith, but I didn’t trust Him.
It took having a child and my mother going in the hospital to bring me back from that.
I know God won’t give me everything I ask for, and that prayer has more modes than petition, but now I pray with honesty and vulnerability more because I’ve learned that prayer isn’t about getting what we want, but about shaping our hearts to do Gods work.
Some of us are born to experience loss early. We weren’t born to an easy life, but God gave us purpose when he gave us our families.
We are blessed to be healthy and smart enough to see lives lived on the edge of our death since we were young and live to share the lessons with those who might take the little moments for granted.
It’s a heavy burden, but not one God would give lightly. You and I – we can make it.
Through weakness we are made strong.
he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
I think i just felt angry at times with God because when i was at school all my friends seemed to have “normal” lives and i had to go through so much when God was on my side. I always asked “why me” “why my family”.. Its hard sometimes to accept that this is God’s way for my family even with so much faith.
After praying so much all the time for healing for my big brother its a hard concept that even after all the prayers he Was still taken from me, aswell as my little brother, and having my mum in such poor health too with the devastating disease.
I stand by my faith and love the lord, and accept that god has my life and my familys life in his hands, and that he wont throw anything too big for us to handle.. But i guess sometimes in your lowest times even to accept that is very challenging
But i agree, we are so blessed to be healthy and iv always believed that i have a purpose for being the healthy one, iv always believed God would use me to support others, and to share my story to help others etc, although what we’ve both been through has been hell, in another way it is such a blessing.. We can understand and empathise with others in similar shoes too us.
One day my time will come where i am strong enough to be like you and use my story in an amazing way like you have
You said “he wont throw anything too big for us to handle.. But i guess sometimes in your lowest times even to accept that is very challenging” – I agree. When Jeremiah 1:5 says “I knew you before I formed you in your mother’s womb”, it is hard to swallow why God would make innocent young people born to die, even before they sin.
It’s hard to think that God will take care of us at time when we know our brothers were born to die through no fault of their own.
God allowing genetic mutations to affect our family can feel like a flaw more than a plan…
It can indeed..
I love speaking to u
In some ways i feel like your my reflection haha
I grew up thinking my destiny was tied to my brother’s genetics, that my fate was drummed to a different tune that my school friends with genetically healthy families. If there is a plan in our families weakness, a part of it might be in our strength. Not that we always have to be strong – that’s a mental trap I sometimes fall into that walls off my emotions – but that in us witnessing grace and weakness and true courage and strength all wrapped in one, we are able to be kind to those we meet, to have a heart of compassion (when the reminders of what we lost aren’t too painful), and to try to make those around us have better days with what they have left.
The best gift my brother gave me was the awareness to value life as it comes…
Do you mind if I write a blog post about getting the chance to talk to you?
Completely agree with what you’re saying. And thats the same with me brother, through my brothers child like faith and childness with his condition there was so much i learnt off him and he gave me strength when he was the one lieing in hospital
No a blog sounds good im more than happy for you too do that 🙂
Yeah, you get it 🙂
I do 🙂Emily posted this today about my facebook author page (https://www.facebook.com/darcyleechauthor/), and her father liked it:And as much as people disparage facebook in what it does for human relationships, today I thanked God for Facebook connecting me to someone like me in a way I’ve never been blessed with before. Facebook is going to be powerful in helping From My Mother find the audience that needs it.