The majority of people go through life doing their daily tasks without thinking twice about what they are doing. When you live with a chronic disability, you don’t always have that freedom. Tasks such as taking a shower or making breakfast require much more thought and effort than someone who is able-bodied. I’m not writing to be pitied, but to educate those who don’t experience the life of a person with a chronic disability. My name is Rosie Correll. I’m in my early 20s and was born with a rare physical disability called Congenital Myasthenic Syndrome, not to be confused with Myasthenia Gravis.
Growing up with a disability came with difficulties, but my parents tried to give me the most “normal” childhood I could have. My condition is so rare that it took doctors 16 years to diagnose me. When I was 15, my parents, Nana, and I went to the Mayo Clinic in Rochester, Minnesota to see Dr. Andrew Engel, who has dedicated his entire career to CMS. He suspected CMS at that time, but I would need a specific muscle biopsy to determine the exact type I have. We returned a year later for the biopsy and I received my official diagnosis: Fast Channel Congenital Myasthenic Syndrome with a gene fault in the CHRNB1 gene. I know that sounds like I just strung a bunch of words together, but what this means is that my nerve endings open and close too quickly for a specific chemical to get through to my muscles to make them work properly. To learn more, check out this article from the Muscular Dystrophy Association. What this means for me specifically is that all my muscles are weak and I need medication to help my muscles function. The meds I get every month from the Mayo Clinic help the chemical get through to my muscles, leaving the nerve endings open longer, and without it, I would not be where I am today.
From the outside, my daily life looks pretty typical of that of a woman in her early 20s who works from home. Behind the scenes, however, a lot goes through my mind when planning how I’m going to spend my day. Living with a chronic disability can be very unpredictable because you never know how you are going to feel on any given day. Let’s talk about a simple, average day for me: I wake up around 9:30 am and take my fleet of medications. On top of the Mayo Clinic prescriptions are vitamins and my anti-depressant. The medications that help with my disability take about 20 to 30 minutes to kick in, so I usually watch an episode of one of my favorite shows or read a book as I wait. I can’t take the medication overnight, so I wake up very weak in the morning. As soon as my muscles start to work, I get ready and begin my tasks for the day. Every four hours (four times a day) I administer the medicine from the Mayo Clinic. My day is largely focused around when I need my next dose because in between is when I can accomplish the most.
I’m fed overnight through a pump that’s connected to my feeding tube and before bed, I prepare the formula. This is how I get the majority of my nutrition, but I still eat by mouth during the day—it’s just limited due to the lack of strength in the swallowing muscles. I typically take my fourth and final dose of Mayo Clinic meds around 9pm. A lot of planning goes into my day because I want to make sure I am at my strongest when I do things that require the most energy. This sometimes means that I can’t do everything I want to in a day because I just don’t have the strength for it. I sometimes don’t listen to my body and do more than I should because I’m stubborn. I end up paying for it the next day as my muscles and body ache from overworking.
Being mindful of my body and my schedule is not something I have to think hard about anymore, it’s almost like breathing. When I talk about the medical aspects of my life, it seems like a lot, like it consumes my life, but I have learned how to incorporate my medical needs into how I want to live. Growing up, I tried hard to “hide” my disability because I wanted to be like the other kids at my school and not be limited in activities I could participate in. The turning point for me was when I was officially diagnosed with CMS because I could finally begin to understand why my body did not work the way it was supposed to and finally explain it to others. Before going to the Mayo Clinic, whenever someone would ask what type of disability I had, I would say “I have Rosie Syndrome” which meant “I don’t know, but it is unique to me and me only.”
My life looks different compared to those who are able-bodied; I have to plan things around my medication doses or plan my doses around my activities. I can’t apply to every job I want because a lot of them require physical labor. However, I can still do typical things for people my age. I love to go out with friends for coffee, shop for the newest thriller novel at Barnes and Noble, and cook dinner every night for my mom and me. Living on my own is a huge goal of mine and it isn’t my disability stopping me—it’s the price of rent.
I wanted to share my story in hopes that at least one person will learn a bit more about chronic illness. It looks different for each and every person and this is just my experience. People with physical disabilities have to fight three times as hard as an able-bodied person to get the education, employment, and life we deserve as a citizen of America. It shouldn’t be that way, but it is. I hope that the more people are educated and exposed to the disabled community that things will begin to change in policy and perception. One thing we can start doing now to help eliminate the stigma around disability is to encourage young kids to respectfully ask questions about differently abled people. When I was growing up, I witnessed many parents turn their kids away from me when they would stare. Now I understand that staring is rude, but what turning them away does is shows the kids to almost be afraid to speak to someone with a disability, that they shouldn’t interact with them. Parents should speak to their children and explain to them that that person’s body works differently than theirs and they need assistive devices to help them physically. I have learned that kids are much more accepting and open when you just explain the situation to them. Children tend to think it’s cool that a person has tools such as a trach tube in their throat that helps them breathe or an electric wheelchair to assist them in getting around. Changing perception and policy starts with an early education because children can then grow up with a different, more open mindset. The simple act of allowing kids to ask questions will teach them in the long run that people with disabilities aren’t any different from able-bodied people. This is how we can make society much more inclusive.
As a Carsey author, Rosie Corell provides detailed articles diving into the lives of Carsey students and current events in the policy world. For example, Rosie reported on Caitlyn Fulton, a Master in Community Development student at Carsey. Caitlyn and Rosie share a similar passion for disability justice and eliminating the stigma surrounding it. You can watch and read Caitlyn’s story, written by Rosie, here.
