Dear Fans,
Those of you who follow my blog have read about some of my hilarious situations related to having a disability. Most of my experiences with having Cerebral Palsy have been comical only because we always find a way to look at CP in the best way that we can. To be honest, if my family, friends, or I didn’t have a good attitude about my disability, my life would be pretty depressing. In case you didn’t know, I need total care. Bathing, feeding, dressing, taking me to wherever I need to be, you name it, I need help with most activities in life. Instead of frowning upon this, we laugh! For example, until you meet someone who deals with incontinence, you don’t think about how many times you “go” in a day! Random times a day, I ” let loose”, not realizing that I have to go to the bathroom until it’s usually too late. Whoever offers to care for me laughs, joining everybody else who is gagging and laughing, immediately assuming that the horrid smell in the room is coming from me. Cheerfully I ask, “Who wants to change me?” Everyone presses their noses, saying “Not it!”, while someone runs for the air freshener. If there isn’t an aide on duty, they fight playfully over who gets the wonderful honor of changing me! (That was sarcasm!) Fighting my spasms and dodging my random kicks, they change me, usually holding their breath! Lighting candles, spraying more air freshener, and turning the fan on, they struggle to keep the stink from over-powering the air freshener. When they’re finished, whoever changes me gets me to kneel and then they they slide their hands under my arms and around my waist. Counting to three, they cautiously pull me up to a standing position. I can bear my weight for a short time, while my helper and I pivot (we call it dancing because of the position we’re in) and sort of “walk” back to the front of my wheelchair. We move until the back of my knees are close to my wheelchair’s seat cushion. I sit back, landing in the wheelchair. My helper buckles my seat belt and then buckles my feet into the chair’s footplates. We roll back into the dining room, prepared to start where we had all left off.
Happy Thanksgiving!!!
K. J. Tyrrell
Hey Kevin, I enjoyed your recent television interview, and plan on picking up your book. As an assistive technology provider with a free clinic in New York City I just wanted to invite you by if you’re ever in the area, to explore faster ways for you to type if you’re interested. I assume you’ve already trialed other methods and decided that that your nose was the most effective way to do it–but from my perspective it just seems like you could be even faster with other adaptations. Pardon my forwardness, but I’m always thinking about how people could be more efficient with technology–it’s just the way my hyperactive brain works LOL. Good luck with your next book and quest for an even bigger publisher 🙂
Mark Surabian
Hi Mark!
Thanks for your comment! We have tried a number of different technologies over the years and landed on this as the most efficient for now. Just several weeks ago a friend recommended a device that holds my ipad up and syncs with an app that allows me to type on the ipad synced with my desktop. I’ll post some pics soon, but you’ll see that it keeps me in a more comfortable position as I’m working. kjt
I want to thank you for helping me to see CP in a different light! Not only just the comical things about it but just understanding what it is and what to expect. I’ve learned a lot about you and CP and for that I am very grateful! May God continue to bless you immensely!!
Thank you for your encouraging comments, Carol! kjt