Since I got sick, getting me to function normally has been a priority. I have spent years trying to gain independence. I have learnt to walk more then once and while my legs aren’t my best attribute they are ones I am very proud of. I am proud that each and everyday I stand up and put my best foot forward.
I’m 18 and I wish this wasn’t a choice I had to make.
I wish this didn’t feel like a failure. I now see that putting the amount of worth I did in my ability to walk, even one that is based out of pride, is damaging to someone with lowering physical abilities. It feels as though everything I have always strived for I am loosing. So much of who I am was comprised of the girl who learnt to walk so many times and despite everything stood back up.
I’m choosing to sit down.
I’m choosing to see that being able to do more with my life, a higher quality of life, outweighs the expectations I put on myself. I choose to get an AFO years ago for the same reason. I choose a handicap placard.
I know that if I want the chance to be independent, which I do, I need assistance. I know that going to University has been something people have believed is out of my capabilities but I got into every school I applied for. I am smart and capable. My body isn’t quite as capable. My body is atrophying, chronically fatigued, and unbalanced. Life has been doable with people to support me but getting around a campus on my own isn’t going to work unless I lessen the burden on my body.
I am really struggling with the stigma. I don’t want to be a girl in a wheelchair. I don’t want to be separated, and potentially isolated. I don’t see myself sitting, in my mind I am running free in fields of wildflowers. I guess my expectations for myself have never lowered and I haven’t yet decided if that is a good thing.
I know that so many people are disappointed that this is a choice I am making. I know those in my prior medical team would not be okay with this. This isn’t he first choice ive made that would make them feel that way.
I hate that I am seeing this as a negative, but I don’t feel good about this. I don’t understand God’s plan right now and I’m trying to be okay with this confusion; That not understanding His plan is not the same as not knowing that there is a plan.
So I will start the process of getting fitted and working with Occupational Therapy.
Sometimes chronic illness isn’t a series of rosses sometimes its tearstained pillows and disappointment.