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By Sandy Ho
As a kid born with osteogenesis imperfecta (OI), a rare and inherited condition
that causes my bones to be extremely brittle, I lived inside my parents’ protective
bubble for 18 years. Growing up, I watched my friends and two healthy brothers
do typical fun activities while I sat on the sidelines. Because my bones could
break so easily, walking, riding a bike, taking karate lessons, sleeping away
at camp—even getting a driver’s license—were all unattainable
milestones for me. I grew up constantly waiting for my turn.
While some people with OI use crutches to get from place to place, I prefer
to use my power wheel chair, since it means I encounter fewer risks of getting
hurt. Most people with OI suffer hundreds of fractures in a lifetime, and despite
taking precautions, I’ve still had fractures from everyday accidents
like clumsy moments and falls. Other times, bones have broken bones simply
because I coughed too hard.
Since people with OI develop differently from other people, our hearing and
dental development can be irregular too. My dentists knows to work gently within
my mouth, and most people don’t realize it, but I usually rely on lip
reading in face-to-face conversations.
It’s nerve wracking to live with the constant threat of getting hurt
so easily, and it’s just as nerve wracking to live under the scrutiny
of well-meaning parents who, I’m convinced, would have sandwiched me
between two pillows to keep me injury-free, had I let them.
Because the slightest thing could cause a fracture, I spent my school years
under the close watch of aides, teachers and school nurses. Despite their guidance,
I still managed to get into trouble at school, frequently for zooming away
from my aide and purposefully losing myself in a throng of students in order
to steal a few unsupervised moments on my own. Sure, I was risking being jostled
and fractured, but nothing compared to the relief I found in those tiny pockets
of independence. I knew deep down that adults had my best interests in mind,
but I also knew that I was growing out of their boundaries. I set my sights
on going to college and living in my own dorm room, and although I wondered
whether I’d be able to manage it, I was incredibly excited to try.
So when that college acceptance letter came in 2005, I was more than ready
to attend and live at Lesley University. Consequently, few arguments have been
more difficult than convincing my parents that I was ready and able to live
there on my own. Their never-ending questions showed how much they cared for
me, and they investigated every possible hurdle, from showering to elevators
to how I’d call an ambulance if I needed one. Eventually, I told my parents
that I could not "what if” my life away. If I did, all of the work
they had done in raising me would have been for nothing.
At the time, I was seeing Nedda Hobbs, MD, associate director of Complex Care
Services at Children’s Hospital Boston. She encouraged my independence
and assured my parents that—with a lot of research and preparation—it
was indeed possible for me to live at school. She connected me with a case-worker
who helped us connect with the college’s disabilities office. From there,
we outlined plans for emergencies and other scenarios. By the end of that summer,
the only thing left to figure out was how to fit my life into a room that was
only 8 by 12 feet.
Check out more of Sandy’s writing at her own blog, called Perfectly
imperfecta. |
