Tamsen Butler – Beyond Rehab
Tamsen Butler is an award-winning writer and military veteran. At 41 years old, she experienced a massive stroke and is now an active stroke survivor advocate. She's a founding member of The Stromies, a trio of stroke survivors with a global presence. She writes about her journey of stroke recovery in recognition of National Rehabilitation Awareness Week.
I did every therapy my insurance would cover: physical therapy, occupational therapy, and speech pathologist visits. At first, it was a flurry of appointments. My husband had to keep track of all of them for me because I couldn’t keep them all straight.
My favorite memory from stroke rehab was when two of my therapists came over to my house (I think it was my occupational therapist and my speech pathologist) and told me to cook something for my family. They said to pick out a simple recipe (I chose pancakes) but before I started cooking they pulled my two kids aside and asked them to come through the kitchen at varying intervals to distract me. My therapists were trying to help me with my goal of focusing on tasks better.
Anyone who knows my kids knows they have huge personalities. At first, all was quiet. I mixed together the ingredients for the pancakes and fired up the griddle. Suddenly my two kids burst into the kitchen, blaring music, throwing confetti around the room, and dancing like it was a Broadway production. The funny thing is that I wasn’t the only one distracted; my therapists stood there watching the chaos with amusement.
The kids retreated to their rooms, but it wasn’t long before they burst into the kitchen again, this time in full costumes. Somehow I managed to get the pancakes on the table and we all had a good laugh about how dedicated the kids were to helping me get better.
Yes, my rehab protocol was unusual, yet it was helpful. But then it just…stopped.
My insurance decided I was “recovered.” Did I feel as though I was ready to stop my various rehab efforts? No. Did my insurance ask my physician whether I was ready to return to my pre-stroke activity level? No. They just gave me a certain number of visits and then figured that was good enough.
Instead of agreeing with my insurance company that I was as good as I was going to get, I reached out to my friend who was a personal trainer. Born with a heart defect, he lived with heart issues his entire life. When he heard about my massive stroke he felt compelled to help me by training me.
While he wasn’t a physical therapist, he understood what it’s like to be genuinely scared that you might simply drop dead if you push too hard. He trained me to be thoughtful in my movements and to never give my affected side a pass; any time I mumbled, “I can’t do it,” he countered with, “Yes, you can!” And I believed him.
I made huge strides with his help. I know I was lucky to have this type of help and not everyone is so fortunate. My insurer may have given up on me getting better, but I didn’t. Even now, at over four years post-stroke, I still see improvements in both my physical and cognitive deficits. Rehab doesn’t have to be prescribed – it can be goals you set for yourself because you’re simply too stubborn to give up.