Sometimes I feel like an imposter. Sometimes I feel like I don’t belong here, like I cheated someone to be here.
When I was a child I had a series of series of seizures coupled with extremely high fevers in a span of about 3 weeks. I was given Last Rites 2–3 times, and my parents were told to “get things in order”. When I survived the last seizure but was left unable to use my limbs, doctors told them that “that was as good as it would get- the damage was permanent”- and they said would “probably affect me cognitively” They thought I would be blind and in a wheelchair with little to no hope for recovery.
This was in 1995. 23 years ago. I was 5 years old.
I spent 2 months in a wheelchair. The right side of my body was worse than the left. There was muscle spasticity and tremors that severely affected my right arm and leg. Then my body began to heal. I gradually regained control of my left side first then the right.
I began walking with a walker and leg braces roughly 6 months from the start of the ordeal, graduated to braces and crutches at 7 months and just one brace on the right leg at 9 months. Finally at 11 months I was able to get rid of the brace all together. I was 6 years old
I still had to relearn to read and write all over again. I learned to read, write and do math at a first grade level by the time I entered preschool. After the seizures, I had to relearn everything. I caught up with reading fairly quickly. But writing was a different story. I couldn’t functionally write again until I was 8 years old. I had a fairly severe tremor in my right hand and it prevented me from grasping anything in that hand for any length of time. Gradually I regained the ability to write but the effects are still there. My penmanship is “doctor- level scrawl” at best and I don’t posses the ability or the fine motor skills to write in cursive. I can control the tremor long enough to sign my first and last name but anything longer that is next to impossible.
I still walk with a slight limp and a have shaky hand that most people attribute to nervousness or something similar. But behind the scenes I have significant lower back, hip, shoulder and leg pain as well as weakness in those areas.
If you and I met, you probably would never guess any of this.
But… its true.
Which brings me to the imposter part:
not technically disabled. I can function well enough to live my life
but I don’t quite fit neatly in the non-disabled category.
But I also have some significant physical deficits- but because I can function in society with out accommodations I can’t identify as a person with a disability either.
I know there are a lot of people who would give anything to have my “problem”.
and believe me I’m really not complaining. I know I’m lucky. I know things could be worse. Way worse.
Just the other day, at work, I complained that I was in pain and I had 3 women 10–15 years my senior jump down my throat, saying that I didn’t get to complain because I was too young. My pain was invalidated because of its invisibility and my age.
But if I still walked with a leg brace and said my leg hurt, no one would think of saying anything to question me.
I guess it boils down to this: