My name is Alison Kabush, and I will be sharing the story of my living with my diagnosis.
I was adopted at birth and diagnosed with Cerebral Palsy at four months old. It all began on a typical day when I went to the doctor for my regular check-up. When the doctor tried to sit me up, I slid across the table (luckily not onto the floor).
The doctor sent me to a specialist where my family and I learned that I have severe Spastic Cerebral Palsy (CP). The doctor ran many tests to determine which part of my brain was damaged and how long I was without oxygen, as a lack of oxygen to the brain causes Cerebral Palsy. One of the most common occurrences of a lack of oxygen is when the umbilical cord wraps around a baby’s neck. During my tests, they discovered that my injury happened in the first trimester, and I stopped breathing for a certain amount of time while in the womb.
What does it mean? How does it feel?
My CP means that my muscles are extremely tight and that some muscles didn’t grow because they weren’t able to when I was a baby. This is why my hands look the way they do. Typically, your muscles grow and lengthen as you age, but my hands are still bent because the muscles that allow my hand to straighten never grew and are still too tight.
It is common for people with Cerebral Palsy to struggle to hide their emotions, which is why I don’t make a very good poker player. Anything I’m feeling, my face shows it. My brain doesn’t let me hide my emotions even if I don’t say anything aloud. It’s visible all over my face.
The startle reflex is also commonly affected by CP. If someone makes a noise that I’m not expecting, and sometimes even if I am expecting it, you will have to peel me off the ceiling! I will jump. When I’m out in public, and a stranger startles me and makes me jump, I just say, ‘don’t worry, it’s only CP.
While these things can seem comical, they are a problem for me. Often when my muscles spasm, it hurts, and I can’t relax them on my own. Going outside on a cold day or into a cold swimming pool is really painful for me. As a person with severe CP, I have non-voluntary moments. The muscles have a mind of their own. I can’t control them most of the time.
Everything that I do, I automatically spasm. This includes little things like talking or using my iPad or computer. Since the tongue is a muscle and it is tight for me, I can’t speak clearly, touch the top of my mouth, or control the movement of my tongue to form letters correctly.
I am more than Cerebral Palsy
When most people look at me and learn that I sound different, they automatically assume I don’t know what’s going on. If people take the time to listen and understand me, they will see that I’m smart, caring, and a loving person with a great sense of humour.