Thursday, February 15, 2024

JUMP, SHOUT, KNOCK YOURSELF OUT

 

I am a spastic quad. Meaning all four of my limbs are involved. I have the most severe type of cerebral palsy. I was born at six and a half months. My mom had been in bed bleeding for eight days before I was born. That's probably when the cerebral cortex of my brain was damaged causing my CP. 

The Moro reflex, commonly known as a “startle reflex,” which all babies are born with, goes away after birth. However, this reflex doesn’t completely disappear in individuals who have cerebral palsy, which can explain my heightened and “jumpy” responses to loud or unexpected stimuli. I startle more when I  am nervous.

When someone tells me to "be still" I try hard to comply. The reality is while trying to comply with their request I  startle more. This leads to them telling me how nervous I am making them.  Their comment makes me feel immensely guilty. I do not want to upset my staff. Nor do  I want to get hurt. 

When I startle not only do physically jump, my heart jumps too. Someone can tell me that I am fine. That I am not going to fall. If I feel off-balance standing on my lift or unsafe in any way. I will become upset. The fear of falling feels worse than actually hitting the ground. The feeling can be so intense that I feel sick to my stomach.

When I was young I was able to be lifted onto the exam table when I went to the doctor.  Exam tables are narrow. I always got the sensation and fear that I was going to roll right off the table. It may seem illogical to you. This fear was very real to me. I made sure someone stayed in the room with me until the doctor arrived.

Throughout my life, individuals have taken great pleasure in causing me to startle on purpose. It may be viewed as hilarious to them. It's cruel to take pleasure in causing someone else's discomfort.

My startle response is a part of me. The trick is not to let it upset me or my staff. They do the best they can the same as I do. The trick is to work together. Trust one another. Communicate effectively with one another. If both sides can do that my care will go smoothly.


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