Ruibal column: Climbing the mountain of a pre-existing condition
I have this crazy idea that I want to hike to the top of Mount Sopris someday.
Not just because I’m sure the view from our valley’s mountain mother is breathtaking.
The summit comes in at just under 13,000 feet. According to AllTrails.com, the route is just less than 13 miles.
I want to climb it because I have dwarfism. After three rounds of limb-lengthening surgeries, I gained 13 inches in length in my arms and legs.
Thirteen is lucky to me.
The type of dwarfism I have is called achondroplasia. It’s the most common form, where a person’s arms and legs are shorter in proportion to the rest of their body. Yes, Peter Dinklage of “Game of Thrones” fame has achondroplasia too.
Growing up, the main reference people made was to “Little People, Big World.” Growing up was trying and exhausting as a kid different from the rest. Kids are ruthless. Adults are pretty childish, too. I couldn’t go anywhere without being stared at, pointed at, whispered about.
One adult asked me in overly slowed, enunciated speech, “Do you go to a … normal school?”
“Yes … Do you?”
My school was accommodating. My chair had a padded back and I was given a stool so my feet didn’t dangle all day. My third-grade teacher had us stop reading “The BFG” aloud in class because it often used the word “midget,” a term widely considered derogatory.
Yeah, yeah, maybe some would say I’m a snowflake who was protected against “mean words.”
But when the world is so harsh to you day in and day out for a condition you never asked to have, it’s nice to have solace in a classroom where you can learn without the sting of being different.
When I was 11 years old, I underwent my first round of limb-lengthening surgeries at the Rubin Institute of Advanced Orthopedics in Baltimore. Limb-lengthening is when bone is surgically broken and pins are drilled past the skin, muscle, into the bone on either side of the break. It’s then attached to a device. I’d turn the device four times a day, which would separate the two bone halves a millimeter each day. Bone naturally heals. So it was a race to extend the bone gap at the perfect rate, while also letting muscles, tendons and nerves stretch to their new shape.
It was a very careful and calculated science experiment, with my body as the subject.
Nine surgeries later, I stand 9 inches taller on my legs and reach 4 inches farther with my arms.
Nine is a low surgery count. I knew kids at the hospital who had 60-plus surgeries before they even turned 13. The limb-lengthening surgery was originally developed for people who had one leg shorter than the other. Surgery would even out the difference so they could walk more comfortably, easing pressure off their joints and easing other pressures from the outside world. Some kids I met had surgeries to rotate bones and joints. It was a slow, grueling process.
It was also expensive. I’m not oblivious to fact that there’s a level of privilege that goes along with 1) knowing such a procedure exists and 2) being able to afford said procedure. My surgeon and family would have to provide evidence that these surgeries were necessary for my quality of life and weren’t just for cosmetic reasons. I would never have long legs like Taylor Swift. But I wanted to be able to drive a car, reach the gas pumps, reach the sink, climb mountains.
Yes, little people can do all of that without surgeries. It’s just a lot harder. Since my surgeries, I’ve imagined what it would be like if my future children had dwarfism, if they would want the same surgeries.
When I signed up for health insurance with this job, I was excited to learn about a health savings account. I immediately thought about those future children of mine. I’d want them to have every opportunity I’ve had, whether they elect for the surgeries or not. I contribute generously — especially for a healthy 22-year-old with no dependents — in hopes for them. I also hope dwarfism is never penalized for being a pre-existing condition.
For now, I just want to work toward climbing every mountain before me.
Sallee Ann Ruibal is the Post Independent’s engagement editor.
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