tempy to permy

I know that I said I would be better at this buuttt life sometimes gets in the way! But without further ado here is a story for you!

When I came home from the hospital in November of 2021, one of the first things that my parents did was get my handicap placard so we had prime parking wherever we were. The “Temporary Disability” placard was red and lasted 6 months before it needs to be renewed. I, at the time, was gung-ho on not needing the pass after 6 months because I felt that I was going to be walking all on my own by then.

When the time came to get a new placard, I emailed my physical medicine and rehabilitation provider and asked if she could fill out the form for me. She emailed back saying that I could get a permanent placard instead of temporary. My stomach twisted into a knot as I read that sentence. The word “permanent” stuck out. Labels have a way of sticking with you and that was the first time that the word “permanent” was used in relation to my injury. I was not prepared to face that revelation and just brushed it off and thought “well at least I’ll have a handicap tag for a few years if I need it,” not expecting to need it.

When I went to the county clerk’s office with my paperwork in hand and got my new blue placard, I felt relieved as I definitely procrastinated until the day before to get a new one and I definitely still needed access to park in handicapped spots. The next day, pulling into my parking spot at work (no we don’t have assigned but I like to think the right handicap spot is mine) is when I started to panic. I placed my new placard on the rearview mirror and the words “Permanent Disability” screamed out at me. I got so overwhelmed and was on the verge of a panic attack. At this point, I was still hoping to get back to my life back to how it was before the accident and was in denial that my injuries were going to be permanent. I was not coping with my diagnosis and struggling with how vastly different my life looked like 8 months earlier that.

It was frustrating because I was doing everything that I knew about recovering from injuries as I am no stranger- resting, physical therapy, and working to get stronger to prevent any other injuries. But a spinal cord injury is not like a broken ankle or torn shoulder. They take time and patience and recovery looks different for everyone. Many doctors have told me that whatever movement and feeling patients have after 1 year post SCI is all they are going to get back. I have been so incredibly lucky with my injury in that I can move the left side of my body with almost no issues and am so incredibly grateful to even be able to walk with a walker.

The last 8 months have shown and proven to me that my recovery is something that I have to choose and work towards every day. They say “if you don’t use it, you lose it” and I feel like I always heard it when people spoke about learning a new language, but it is also true for my injury. If I am sick and can’t walk as often as I was before due to being weak, I have to work back up towards walking that same amount again because I can lose what I have easily.

My therapist used to work with me on being present and to not worry too much about my progress and recovery. I have good days and bad days with how my body decides it wants to function. On the good days I feel strong, I am not tired, and can typically cruise with walking. On the other hand, I also have days where I am weak and have leg spasms, which prevent me from walking safely. On days like these, she asked me to remind myself that although this is where I am at this moment, it doesn’t mean it's where I will be next week, next month, or even next year. Remembering that advances in medicine are also happening every day so who knows what new research and treatments will be available in the future.

Having a “permanent disability” has me thinking about the future a lot, especially when I remember that I am only 27. The rest of my life I will be working on recovery and taking medication to help my body function. I don’t know how much more I’ll get back or if anything else will come back, which can be overwhelming. On the other hand, It’s easy to think about the past and how things would be so different if I never took a step back and fell. When I start having the “what if” thoughts, I shut them down right away. All I can do is stay present and work on getting better every day.