June 2020 – Diagnosis Be Damned

My Island

I used to run around this island and swim off the dock. I used to rock climb and pick blueberries. I could paddle a canoe. I was strong enough to ring the dinner bell and wash the dishes when dinner was through. I was awake longer than the sun.

pater, Protector, Provider

But my daddy. My daddy surprised both of us that night when I called. He told me to start packing my bags. He very calmly announced that if I was that sick, it was time to come home and regroup. In that moment, my daddy began protecting me from myself. He stopped the panicking voices in my head that were fighting over whether or not American University or my life were more important. He stopped the very persistent voice that was screaming about how I was letting him down. He stopped my tears. He provided a solution to the problem that I felt I had been facing alone. Suddenly–we were a team of three.

Double Take

There are many parts of disability that can be awkward or embarrassing for us. We need assistance devices to keep us safe. For me, those things are my mask, my Service Dog, and my wheelchair. Sometimes my list includes more or less. For other people with disabilities, the list includes other things. For people in the able bodied community, all we ask is for respect, and that simply means not doing a double take or staring when you see something that you think is different or doesn’t fit what you think should be the norm.

Mom, Advocate, Caregiver, Ally

When I look back on it, I remember a journey that began when I was in elementary school–too young to understand enough to fight for myself. My mom was my advocate. When I am too sick now–even as an adult–my mom still stands as my advocate.