I was asked yesterday by monkey boy’s mom to do my best to describe what Cerebral Palsy feels like. She asked this, so she could try and better understand her five-year-old son on a physical level. But, for me and for her five-year-old son, whom she posed this question to previous to me; this is virtually like asking me why the sky is blue? I don’t know this answer, nor do I know why the sky is blue. But what I tell you is this: everyone’s perception of the feelings surrounding Cerebral Palsy and the words he used to describe such a feeling are going to be different. With this long-winded introduction I’ll do my best to describe what today feels like. I say what today feels like because for me at least every day is a new ball of wax and every ball of wax presents new accomplishments and new frustrations. Every day literally is different from the day previous or the day to follow from me. With all this information here is my best explanation of the day.
Cerebral Palsy for me is on most days heavy. I have this strange urge usually to compare myself to stretch Armstrong, I think this is because my muscle groups are working overtime just to sit through my day. I think I can best describe the tightness of Cerebral Palsy for me as stretch Armstrong because when he is stretched that’s pretty much how I feel my muscles on a constant basis. Doesn’t this hurt? Sometimes, but I wouldn’t say it does because it’s constant. Sure there are days when it is a lesser degree but generally speaking, it stays in a constant range. In fact, I don’t drink, this is personal preference because I’ve lost loved ones but it’s also because alcohol is a muscle relaxer, and I absolutely hate and repeat HATE when my muscles relax because I don’t feel I am in control of my physical body. People, it was just one screwdriver! I have friends on the other hand with Cerebral Palsy who enjoy the relaxation effect of a drink! Today I am in considerable pain brought on by the joys of being a female. My hips are generally worse to show tightness brought on since my post left hip osteotomy in 1997. Granted, I wouldn’t want to have not had my left hip osteotomy as I have experienced no pain such as that previous to surgery- it was awful, worse than awful, I just can’t think of a word.
I hope this helps in some way to answer your questions
OK, the Stretch Armstrong comparison really helps a lot. I can sort of imagine how it feels now, although I doubt I’ll never fully understand it. I just really want to try to understand as best I can how Monkey feels.
As for staying away from alcohol, I’m with you on that one! I’m not much of a drinker at all; I’m more of the one glass of wine a year type. Due to the fact that alcoholism runs in the family and its ability to loosen up tight muscles, I guess I’ll have to be extra careful to make sure Monkey knows the risks as he gets older.
Again, thanks so much for all the information – you have helped Monkey and me so much!
that one scrwdriver went to my head and my best friends dad spent 20 minutes tryng to get me into the van after a wedding because i was “relaxed” i was trying to work overtime on a physical level and compensate for the stuff running through my system it was one drink lol i wasnt even feeling a buzz but seriously tell my body that! I got stiffer then a board and thus it was hell (and hilarious for everyone but the guy lifting me) getting me into the van!
Ugh ugh ugh!
And there are other things which affect you such as lack of sleep.
Yes, it would have been dreadful.
John Hickman, the Australian mathematician, liked to take a tipple of Scotch to relax his muscles.
When Rosemary Crossley and Annie McDonald heard of it, Anne didn’t like it at all.
Great to hear the story of you and the screwdriver, regardless.
Sounds like you are almost trapped in this body.
Great that you’re sharing you world with others and making us more aware of what it is like and how you can live with it!
I get that every day is different and every person with cerebral palsy has their own perspective, but your description increases the understanding of those of us who are listening. Thank you for taking the time to give a mother – and the rest of us – such insight.
Thank you for trying to do the impossible and explain reality! It is a valiant attempt and it is interesting and helpful.
That was a great post! It can be especially hard to explain differences in perception because we lack a common refernce point. I run into this when people ask me to explain my sensory problems.
Very interesting post! And I love how you compared it to explaining why the sky is blue. I have rheumatoid arthritis and trying to explain chronic pain is a little like that, too.
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