As someone who lives with Cerebral Palsy, my independence is important to me. I’ve written on my blog in the past about why the possibility of living in a nursing home terrifies me. Thankfully, Medicaid makes it possible for me to live in my own apartment in my hometown.
The PCA program run by MassHealth pays my PCAs to help me with activities of daily living such as toileting, showering, and meal preparation. I am grateful that my PCA provides around-the-clock care for me. If I need to go to the bathroom in the middle of the night, he is there to help me.
As grateful as I am for my PCA’s care, depending on someone else to help you live your life is difficult sometimes. Cerebral Palsy prevents me from being able to drive. I’d love to go to the grocery store or the mall on my own sometimes. Coordinating my schedule with his can be a challenge. He is very flexible, but we each have our own lives. Occasionally, I worry that he sees me as a burden. There are times when I choose not to go out because I don’t want him to have to drive me all over town.
Most recently, I felt terrible when I had to fundraise for the seat elevator on my newest power wheelchair. I didn’t like asking my community for help covering a medical expense, especially because my insurance covered the seat elevator on my first power wheelchair. I am thankful that members of my community raised the money, but I wish I never had to set up a GoFundMe page, to begin with.
When I was growing up, this feeling was much more intense. My whole life, I have always felt like a burden to my family. My family members have always helped me. I’ve always wanted to be able to help my family as much as they’ve helped me. When my classmates started working part-time jobs in high school, I wanted to join them. But it wasn’t just for the sake of saving money that I wanted to do it. I wanted to be able to help support my family.
In particular, my parents have always been there for me. They were the ones who took me to St. Louis for my Selective Dorsal Rhizotomy in 2005, outpatient PT appointments, and to Children’s Hospital Boston numerous times since 2009. They did this while working full time and raising their two daughters. I am forever grateful to them for their devotion and sacrifice.
Interdependence is complex, but everybody needs help sometimes. I wouldn’t be where I am today without my community’s support. I am blessed to have the support that I have had. Everybody is worthy and offers something to the world.