A common question many people ask of us who have disabilities is, “How do you do it every day?” Or, my favorite comment, “I don’t know how you do it! I couldn’t handle doing what you go through.” My initial reaction is to feel a bit offended and annoyed because, really, what choice do I have? I am just living my life as anyone would and making the best of it. But I forget to ask myself if I am living my life as anyone else would.
One of my closest friends for the longest time, who also has a disability, and I had a conversation about how living with a disability is unique. The conversation stemmed from a week that was turned upside down for me in minutes, starting on Tuesday afternoon. I guess having a disability truly does add a whole other stress dimension that we tend to overlook, because to us, it is our normal. No matter how severe or mild your disability might be, it is something to deal with on some kind of level. I spent my entire life running away from my disability instead of looking at it for what it is.
I do love my life, first and foremost. I am never ungrateful that I’m alive, despite having cerebral palsy. In fact, when I was born, I practically did die and was revived with CPR. I never take that for granted and want to live out my dreams as much as possible. That said, cerebral palsy can also bring on a certain level of stress that someone without a disability will probably never experience.
I’ll try to help you understand a little bit of what I’m talking about in terms of stress. Imagine that your week is on track and normal. You’re doing what you want and need and getting things accomplished. Then, you receive a phone call telling you that the means to most of your independence will not be able to come for the rest of the week. This independence includes getting dressed, eating meals, brushing teeth, cleaning the house and, not to forget, transportation. How would you feel and what would you do?
For thousands and thousands of us who rely on others to assist in our daily life routines, the above scenario can happen at any time. An attendant can easily quit or decide not to show up just like that. In my case, this week, my extremely reliable attendant was very sick and the doctor told her she couldn’t work. I felt bad for her, but I also felt sheer panic before I pulled myself together to try to piece life together. In addition to my aide not coming in, my daughter just came down with the stomach flu!
I’m very fortunate compared with many others with disabilities because I’m married and I have children who can help me with some tasks. I also have another attendant who often fills in as needed and family members who would do whatever is needed when necessary. I don’t like to inconvenience anyone if I can help it, so I try to arrange things as well as I can before I ask for help.
Luckily, everything worked out very well. My alternate attendant was able to work several hours from Wednesday to Thursday, plus her regular shift on Friday. My dad came over for dinner as my husband works during those hours. Thankfully, neither my husband, son nor I got the stomach flu, and my daughter was better within a day. Plus, school canceled the remainder of the week because of extraordinarily cold temperatures and a snowstorm.
Having an attendant unexpectedly not come to work isn’t new to me, but every time it happens, it creates a certain level of anxiety and stress that others might not feel. I just need to remember to take a deep breath, relax and believe everything will work for the best!
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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