Living with Cerebral Palsy and Intersectionality

I put on roller skates a few times, but that didn't work out so well. I bought a skateboard and that didn't work out so well either. I tried countless times to ride a bike and that didn't work out so well either. I took one look at ice skates and said no. My attempts to snowboard were okay but not great. Skiing, however, is the one activity with an object of mobility under my feet that I actually did well at over time.  Roller skates were the scariest because every time I tried, whether I had a wall to hold me up or people assisting me, I was totally off balance. For me, the experience was like those cartoons where the character's feet start spinning under them because they're about to take off fast. I was typically about to take off of my feet and go airborne.  Being a skater was cool when I was a tween and so I went out and bought a cheap skateboard with some lawn mowing money before ever really seeing if I could do it. After a number of rough falls on the concret...

If you've ever seen one of those teen movies about the school dance where the seemingly awkward guy hangs out on the wall, that was me a lot during those years. Not because I'm a librarian but because I can't dance well.  In middle school, I hung out on the wall because the dancing that was popular where I went to school was a lot more like athletics than a slow dance – especially because no one was encouraging middle school youth to slow dance. Frankly, the dancing was so physical, I stayed on the wall because I was afraid of getting hurt or knocked over.  Something amazing changed that in high school, the most barely mobile slow dance ever was introduced to me as an option by some of the ladies I hung out with regularly. I'm not sure that they know what a big deal that was for me. I was a teenager, so some of it was definitely that girls I liked would dance with me, but most of it was that I got to participate in the dance rather than sit on the wall. This may be the ...

It was an Orwellian year much like this one. At just nine months old, I had craniosynostosis surgery with sutures of the skull and all. I wish I could say that was the biggest challenge in my first year of life, but I beat that in the first minute. I have my next five posts in the queue, but they don't reflect things I'm learning about my journey in real time.  I used to say that “I live the impossible” a lot and some people were glad to see me and my ego leave that line behind. But, I've learned that it was a more accurate statement than I could have imagined. On the odds alone, I shouldn't be here today. I'm still processing what I've learned about my medical history recently, so I'm not sure how much I want to tell you right now.  In less than six weeks, I'll be speaking to professional colleagues about Cerebral Palsy and intersectionality. The likely cause of my CP, still to be confirmed, could have taken my life. I didn't know that until now. Th...

Many of my summers as a kid went like this, finishing the school year, having surgery, and recovering or in physical therapy afterwards. There were a lot of doctor's visits and physical therapy appointments during the first twelve or so years of my life.  For the two craniosynostosis surgeries I had prior to the first grade, one of my surgeons for these procedures was at one point the head of plastic surgery for a major university. This man saw me every year and more in the early days for over a decade. I recall my final visit with him at age eighteen. He indicated that my skull had reached its full growth and that I was safe to discontinue our years (or at the time lifetime) of visits. He also offered to provide cosmetic surgery to fill in the indentations on the sides of my frontal bone just above my orbital sockets. I declined on the spot because the last thing I wanted was another surgery (I didn't know that I wasn't done with surgeries but thought I was).  At eighteen,...

It's March and March is Cerebral Palsy Awareness Month. For about a year now, I've been sharing my experience living with Cerebral Palsy to do my own part in creating awareness of what it can be like to live with CP. But, I am not alone. Millions of people around the world live with CP and each of us have similar and unique experiences with CP.  According to the Cerebral Palsy Alliance Research Network (CPARN), people with CP use three to five times the energy of non-disabled people. For me, on a daily basis that looks like ongoing fatigue, a healthy appetite that hasn't diminished since I was a teenager, and an above average coffee habit to sustain energy. They also indicate that premature birth and stroke are some contributors to the onset of CP. I was born two months premature and have some other conditions that are likely related to the CP but not part of it (such as vision related issues). Cerebral Palsy is a muscle disorder caused by a brain injury. I've experienc...