Although I am 41, I still have insecurities about having cerebral palsy. I believe that from the moment you realize that you are different than others, you psychologically feel different about yourself. Often, no matter how much you do not want to feel insecure, these feelings usually find an opportunity to climb inside your mind.
My type of cerebral palsy makes it very difficult for me to control my limbs in a smooth, directed movement. What does that mean for real life? I have difficulty feeding myself with utensils, dressing myself, using the bathroom, writing without technology, and many daily life activities that we all do a million times per day. Needing assistance in these situations can leave someone feeling vulnerable and insecure.
This scenario might sound a bit crazy to you, but when I am in my wheelchair I can’t successfully feed myself. Yet when I am sitting on the floor, I can feed myself — for the most part, anyway. If it’s food that I am able to stab with a fork, I have a weighted fork and can get the food. A weighted fork has weights inside, so my arm has a harder time having a spasm and flying away with it. For food that I can’t use a fork to pick up, I simply bend over and pick it up with my tongue or mouth.
Eating by bending over and using my mouth gives me greater independence and freedom to eat at my own pace. Sometimes when you are being fed, you worry if you are eating too fast or, in my case usually, too slow. Sometimes you feel self-conscious if you want to eat seconds or more of something. I once heard someone compare how I eat independently to a dog eating their food. From that moment, I felt almost embarrassed to eat this way in front of people, especially when they do not know me very well. I feel the most insecure when I have a new personal care attendant, or when my daughter has a friend sleep over.
Using the bathroom independently is usually not a group activity (unless you have toddlers, of course). However, when you have a disability that prevents you from using the bathroom on your own, insecurities can happen. If I could have one ability that I could do completely on my own, it would definitely be to use the bathroom. When you need help using the bathroom, you might need help with cleanup, or as a female, changing feminine products. All of this can bring on all kinds of insecurities and even embarrassment.
I hate asking for help to use the bathroom because I do not like inconveniencing anyone. I also do not like having to put off going to the bathroom because I am out somewhere, either with someone who can’t help me or the accessibility just is not practical. I cannot tell you how many times I have been in physical discomfort or pain because of not being able to go to the bathroom.
I wish I had the answers to overcoming these insecure feelings, but I’m still working on that myself. I just try to accept being human, and I have the right to eat and use the bathroom just like anyone else. Not using the bathroom can cause damage to the body, and that is a lot worse than asking for help.
Note: Cerebral Palsy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cerebral Palsy News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cerebral palsy.
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