I’ve wanted to write for so long. The words no longer flow from me. My mind is so confused all the time. Not able to think clearly, make sense of it. The surgeon says around day five post-op my thoughts should become more clear and I should begin to regain my focus again. I’m a former school nerd. I say former because it has been years since I’ve been able to sit and devour a book. My hope is I’ll regain my school nerd status once again.
It is amazing to feel validated. For so long Dr’s haven’t been able to piece together what has been going on. When I finally figured it out while admitted for complete paralysis September of 2019 the Dr’s wouldn’t even consider to look as craniocervical instability. (CCI)
I asked to be discharged now knowing what I needed to do to gain mobility
again. The communication between my brain and my body was being pinched off with my CCI suddenly becoming so severe.
I began researching from that hospital bed how to help myself. In an unmanageable amount of pain we drove home. The stubborn person I am, the fighter within me, was determined to figure out how to live with this.
Upon arriving home my husband, Trevor, drove right up to the house steps to get me out. He told me to wait there while he parked. I still had movement in my arms though so I pulled my self backwards to the front door when I had to take a break. Then I continued into the entry way. Trevor offered over and over to help but I was insisted I could do it. I made it through the entry way and rested.. for a good 10 minutes. I eventually made it to the couch.
It was evening when we made it home. When it was time for bed I sat on the stairs and went up one at a time backwards. Every few steps I had to rest. It was hard to believe I was running long distance for the fun of it just days before.
Morning rolled around. As usually, I woke before Trevor. I rolled out of bed carefully, pulled myself to the bathroom and tested my ability to hold my body weight on my knees. I found if I held my hips in line with my legs and torso I could support my body weight on my legs. I got ready for the day. Got everything I would need and made my way to the stairs, then down one step at a time. I had to move one leg with my hand down to the next step, then followed by the other leg. I repeated this till I made to to the main floor. I scooted over to the couch and laid down.
I spent that day researching CCI. I came across the hard brace and knew that was what I needed to regain my movement, and support my head. It was a long few days till it arrived. The same day it did I had my first appointment with my physical therapist. I’m very fortunate to have someone trained so close to home. PT became a life line as I navigated my new life.
In a matter of days I was walking ever so slowly with to forearm crutches, I’ve used one to two crutches to walk ever since.
My medical journey was full of ups and downs. It wasn’t one I really wanted to share as I went through it. It was an emotional rollercoaster with each new diagnosis. The joy of finally having answers, piecing together myself, my medical history was finally starting to make sense. Then it would hit, the realization that these were life long conditions that have no cure. I was now categorized as someone who has chronic illness, disabled.
I know I put off any mourning. I didn’t want to mourn something I’ve lost when I didn’t know what that something was yet. I had read others experiences, made connections with a community who understands, but still I didn’t know my future. Everyone is so different.
I can’t help but think of my youngest. It saddens me that he won’t know the active mother his brothers did. I’m not sure what my future will look like after surgery. Will I manage to kick a ball around with them? Will I be able to play on the playground again with them? I’m determined to be able to bike again as a family, even if I’m on a trike with head support. I’m determined to swim as a family. Figure out new ways to be active with them.
I was so checked out mentally with my youngest. Postpartum Psychosis nearly took me. I wasn’t present, I was only “stable” less then 2 months when paralysis hit. He has never known the “real” me. I mourn for him what he doesn’t know he’s lost.