With my relapse of my chronic inflammatory demylenating polyneuropathy, I’ve had a lot of time to reflect. I’m constantly reflecting, but when you are mostly stuck flat with bone crushing fatigue and incredible pain, after I lament about how awful it it for a few minutes, days, weeks, years lol, I go to my reflecting place.
This is a picture taken awhile ago where my body gave me a break, I had a new and excellent job waiting, I had just come home, I felt really strong emotionally, and my son and I were going on some small adventures. It felt like all was right with the world.
Within 2 months of this picture being taken a lot happened. I couldn’t take the job, I was thrown some new and challenging responsibilities and my neurological problems hit hard, literally, when I fell and broke 3 bones.
I had been telling my neurologist I had been falling. I told them I had broken 4 other bones from falling in the past couple years, so when I hobbled into the office with my boot on as I completely shatter my big toe, a big fat purple cast as I had broken my hand in two places, and a brace as I had chipped a bone off my elbow (guess that’s technically 4 breaks), I kind of jokingly said to the neurologist, “do you believe me that I’m falling now?” I think it was clear.
I recently got the neurology notes from that couple years that don’t say much, but I’ll give you the humorous synopsis. It starts as “patient is most likely manifesting symptoms” to the final being “oh shit!!” In other words, there was a lot figured out, but the last statements have to do with some mysterious neurological complications that had never been seen together.
I’ve spent the last few days attempting to get ready for my loading dose of IVIG that starts in the morning. I didn’t have tons of success as my legs are garbage right now and general pain from my fused spine and degenerative disc disease limited me. I certainly haven’t felt too free.
I was approved for a grant to make my house disability accessible. I felt silly as I’m not disabled. Yeah Lizzie, because everyone has a spare pink wheelchair on standby and forearm crutches, like everyone, right!?
The first thing the grant paid for was a literal surgeon’s stool that pumps up and down easily so I can transfer from my wheelchair to the stool, pump it up and be able to reach everything in my kitchen. Think barber chair, but an elite race car model.
Reaching for my top cabinet, for just a few moments, I remembered that freedom feeling of doing something with ease that I used to take for granted as do many, simply being able to cook. I have celiac disease so I make everything at home as well as follow an anti inflammatory diet/plant based eating plan. I do it to survive, not to be a crazy health nut. My wheelchair is too low causing me further pain to do kitchen stuff.
After an intense week for several reasons including a health appointment wanting to send me to a rheumatologist, an immunologist, and infectious disease specialist…, I was ready for a break.
Physical disability looks different for everyone. The use of my new stool to move about my kitchen gave me that touch of freedom I felt that day the first picture was taken. I felt freedom when my forearm crutches had been made. I felt freedom the day I picked up my custom wheelchair.
Freedom might not look like my throwing my hands out standing on just my own two feet enjoying the promise of a hopeful future. Sometimes freedom is being quiet for a bit, knowing your truth, acceptance that not everything is right in the world, and moving to appreciate what is.