Here is the story of growing up with my brother Dana, first published on March 12, 2012.
Dana left this world on Labor Day, 2016.
I went through the windshield of a car when I was four years old, back in the day when seatbelts were charming accessories. The glass shredded my face, the head-on collision gifted me with brain injury coupled with a quirky auditory processing disorder. My deafness came later.
Events of great magnitude seem to have a way of silencing the world and oneself.
The accident silenced 4-year old me, made me still inside.
I remember the change and I recall my world shifting, the confusion that I felt,the isolating pain of experiencing the shift within others.
The world, you see, doesn’t quite know what to do with little girls with blood-red scars all over their sweet little freckled faces, with their strawberry-blonde hair shorn off their heads. It felt as if the world took one look at me and turned away, embarrassed, muttering something about my “pretty eyes.”
But my brother knew what to do.
Only a year apart, he felt closer to me sometimes than my life-breath.
Through the years, where we lived changed, but not much did within our relationship.
Instead of roaming wild on our sheep farm in northern California, we were combing the coral reef in front of our house in Levuka, Fiji, then bicycling with wicked speed down the streets of the capital city of Suva.
My vision, always incredibly poor, ceased to be so much of an issue as my coke-bottle glasses were put aside each day in favour of contact lenses.
This, right at the same time as my hearing was getting noticeably worse.
He’d tell me what people were saying, my automatic translator of sorts. I’d simply look at him with a question in my eyes and he would tell me what was going on. It wasn’t a big deal but it happened a lot.
In the meantime, I showed him what I thought to be the “cool” dance moves.
We practiced together in his room with our ancient, giant FM radio.
We had our separate groups of friends – sometimes we ended up all playing together and sometimes we didn’t and it wasn’t a big deal. It was just about having fun.
He made me feel better when I was sure no boys would ever like me. He brushed off my tears when people teased me or when I realized that I was more like Dawn Weiner from the movie Welcome to the Dollhouse than I was Veronica from The Heathers.
Without reservation, I loved my brother more than anything in the world.
Many decisions in my life were made from that love.
My decision to go and live in Taiwan to help him out (or, as I later joked, provide him with slave labour – my brother is a notorious workaholic).
We’d stack up credits, divvy up classes, splitting focus (I paid more attention to the ones I was “responsible” for; we’d compare notes and hold tutoring cram session with one another on our respective areas), which got us both out of University, Bachelor’s in hand, in two and a half years. It was hard. It was great.
We worked well together.
My decision to have more than one child was without question from my relationship with my brother. I couldn’t imagine not giving my child, my beloved little Sprout, a sibling to love and grow up with.
I just didn’t picture that the sibling I would gift my son with would, like me, have a disability.
I didn’t think that my son would be in the same position as my brother – an older sibling of one who had needs that were less common than most. The doctor who delivered my daughter’s prenatal diagnosis said she’d be a “burden for life”; in his urging us to terminate her life, he told us that we should consider our son, as she would be his burden after we are gone.
It spun me around.
My memories of growing up with my brother… Was I wrong in thinking that my brother and I were such a team? Was I imagining everything, casting a lovely golden glow on our lives simply because they were memories? Was growing up with me really horribly hard for him? Was early life some unmitigated series of various burdens for him? Was I his burden?
We’ve never really talked about it, you see. We do not talk about things like that. We’re from that Celto-Scandanavian farming stock, that don’t get into things like “feelings”.
So I asked him. In an email. This is what he said:
I really find the question funny! Growing up I never looked at you as deaf or scarred. You were my sister. We fought about everything but that just brought us closer in later years.
When we were young you had a hard time understanding other people and in many cases even mom and dad which made you naturally look at me and I would say the same thing again and you would get it. You naturally taught me to speak slower than most people and clearly.
Growing up I really never thought about it as a chore or looked at you as disabled in fact I thought you were tough and courageous. I remember teaching you how to fight and then you decked that big Fijian girl who was teasing you. You really didn’t let anyone push you around!
When we were young maybe because we moved quite a bit we weren’t able to develop a lot of friendships with others so it was basically you and me – partners in crime.. [here he talked about crime stories I don’t want known]
I have so much to thank you for – your “disability” taught me so much growing up – to be more patient, understanding, and protective… you are and always will be my little sister.
We become so scared of the unknown in our cozy American world. Scared of what we don’t know – and disability is such a great unknown for most of us.
When a doctor tells us that our unborn child who has received a prenatal diagnosis of a disability (- be it Down syndrome or another) will be a “burden” for other children, for ourselves, it so easy to slip into the fear those words bring.
Because, well, we don’t know what it’s going to be like.
And yet… in the end, what is a “disability”? Isn’t it just a different way of functioning?
Not necessarily any more or less of a burden than we make it to be.
I think the real burden is living in a world without love.
And that is something my son will never be burdened with.