A common question many people ask of us who have disabilities is “How do you do it everyday?” Or, my favorite, “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. I think I have a great life. But, what I forget is to ask myself am I living my life as anyone else would?
One of my longest closest friend who also has a disability had a conversation with me about how living with a disability is so unique. The conversation stemmed from my week turned upside down in minutes starting Tuesday afternoon. I guess having a disability truly does add a whole other dimension that we tend to overlook because to us, it is our normal. No matter how severe or mild your disability might be, the disability is something to deal with on some kind of level. I spent my whole 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 revived with CPR. I never take that for granted and want to live out my dreams as much as possible. With 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 what I’m talking about in terms of stress. Imagine that your week going on track and normal. You’re doing what you want, what you need and getting things accomplished. Then, you receive a phone call telling you most of your independence will not be able to come in for the rest of the week. Independence such as 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 anytime. And, 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 it together. On top of her not coming in, my daughter just came down with the stomach flu!!
I’m very fortunate than 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 that would do whatever needed when necessary. I don’t like to inconvenience anyone if I can at all help it so I try to arrange things as well as I can before I ask for help.
Luckily, everything did work out very well! My alternate attendant could come and work several hours between Wednesday and Thursday then her regular shift on Friday. My dad came over for dinner since my husband works during those hours. Thankfully, neither myself, husband or son got her stomach flu, and she was better within a day. Plus, school cancelled the remainder of the week due to extraordinary cold temperatures and a snow storm.
Having an attendant unexpectedly not come to work isn’t new to me, but every time it happens, it does create a certain level of anxiety that others might not feel. I just need to remember to take a deep breath, relax and believe everything will work for the best!
originally published on cerebral palsy news today by Jessica Grono
