Aides to the Rescue
At various times during my life with rheumatoid arthritis I have needed help to assist me with my limitations. This includes after surgeries, like joint replacements. But it also includes that time I broke my leg in college.
My mom worked miracles (seriously, I don’t know how she did it) to get me the support I needed to stay in school. Since the college was located more than three hours from home (so that my family was too far away to assist me), she also arranged for me to get help from aides several times a day.
This assistance was a necessity because I was in cast from the top of my femur to almost my ankle and could not bear any weight on the leg for six weeks while the break healed. While I used a motorized wheelchair regardless (due to the long-term effects of my rheumatoid arthritis), the inability to bear weight meant I needed help transferring, showering, going to the toilet, dressing etc.
Every morning an aide came to my dormitory to help get me up and ready to go to class. She would help me through some exercises to keep my strength up as best as possible, then help me to get cleaned up and ready for the day.
Needless to say, it was crucial that my morning aide arrived on time or got a substitute if she was sick. It was terrible when one day she didn’t show and no substitute came. Luckily, my dorm neighbor noticed I wasn’t up as usual and came to check on me. She helped me to the restroom and I was able to struggle into my clothes and get to class, but I’ll never forget the panic I felt when I needed the help and the person I relied on wasn’t there.
The rest of the day was a bit easier—something about the morning was always more stressful and important to have help. But nonetheless, I had a strict schedule because the aides came at specific times. There was an afternoon aide to help with the restroom. And an evening aide to help me get into bed.
In retrospect, I understand somewhat why my college may not have wanted me to stay in school that semester. I think it would have been easier for them if I had gone back home. It was a risk to let me stay, to allow aides to come into my dorm, and make accommodations that ultimately allowed me to stay and thrive in college. However, I knew that if I had left, I would not have come back. I still feel certain of that fact.
Needing that kind of physical assistance was not comfortable. We like being independent and taking care of ourselves. I didn’t like feeling dependent on someone else and adhering to a schedule for restroom breaks. Just think about the parties and ridiculous random gatherings during college life that happen at odd hours. I eventually got those experiences, but not during my first semester.
It is true that there are times in life when we need more help and we have to be able to accept it. Maybe it is not how we want things to be, but sometimes that’s just the way it is. A long time ago I gave up on certain activities, like doing laundry and cleaning the house myself. I just can’t physically manage, but I get the help that I need.
I think it’s better to accept the need for help when necessary, and not disparage ourselves. So call the aides (or whomever) to the rescue, and thank them for helping out.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?