16 Sept. 2015, presented to residents from Scripps Mercy and UCSD Schools of Medicine
It’s been 7 years since I had a stroke that left me paralyzed in my right side and unable to speak. I went to Palomar Hospital and was in intensive care for 1 week, and on the rehab floor for 3 weeks.
The doctors said to my husband, Greg, that my stroke was massive. No one said that word to me, but I knew that something big had happened up and down my body...
- At first I couldn’t move my right leg at all, but I could walk by the time I left the hospital.
- My right hand didn’t really start to come back for nearly a year. It still has spasticity. And I’m receiving Botox to help with that.
- My speech had 3 conditions: dysarthria, aphasia, and apraxia.
o My dysarthria lasted only about 6 months.
o My aphasia lasted about 2 years.
o And my apraxia is 7 years and counting…
Those were my clinical symptoms.
They say every stroke is different. But people don’t really realize that every stroke is also complex and messy. Mixed in with those symptoms are emotions -- like confusion, frustration, anger, denial, resentment, grieving, and sadness.
All these conditions and emotions are rolled up into the survivor – a person who might need medication or therapy of course, but also might need words of encouragement, a thumbs-up, or even a hug. This can make the therapist’s and the doctor’s jobs much harder but ultimately more rewarding.
To make matters worse, a recent study found that only a 20% of survivors and their caregivers had received advice about the emotional impact of having a stroke. But two-thirds of survivors find themselves depressed and anxious. And almost half of survivors report feeling ‘abandoned’ when they leave the hospital.
When I left the hospital, I came home to a life that was far different and far more difficult.
· At home, everything had to be judged whether it was good for me, unsafe for me, or impossible for me.
· Every footstep I tried to take, I had to think which leg was I going to lead off with; how was I going to get there and back again; and would I be have enough stamina to make the journey?
· Everything I picked up with my hands, I had to think about how was I going hold it; which hand was I going to use; and would I drop it?
· Everything I wanted to say, I had to first remember the words to say it – and then I had to remember how to make my mouth say those words.
· It was all too exhausting… and very depressing.
When I had my stroke, everything changed for me in an instant …
- I had always been a good conversationalist – but now what came out of my mouth didn’t sound like me and often wasn’t even the sounds I intended to say.
- I had earned a PhD – but now when I tried to speak, people sometimes thought I was retarded.
- I used to have a job that I was good at and I loved -- but now I knew that I would never work again and all my work friends would slowly drift away.
But back then, I figured all this couldn’t possibly be permanent, that eventually I would recover. That was only partly true. A lot of these things have improved over the last 7 years. I can drive again; I can use the computer again; I can work in my garden again; I can write again – sort of -- with my left hand; and I can make myself understood again.
But it’s also true that everything has permanently changed for me. This is my reluctant new normal – a version 2.0. This new me is a quieter me, a less active me, a slower-moving me. But it’s still me.
Eventually, I realized that my new permanent job was the development of this new me -- working on my rehab and recovery and gaining a new self-worth. And when working on me, I realized I could help others at the same time.
To that end,
- I now volunteer at the rehab unit at Palomar encouraging others.
- I also sit on the advisory board of the Speech Therapy program at Cal State San Marcos.
- I maintain a website about stroke rehab called strokewise.info.
- And I give talks – sometimes with Greg – to students, residents, and survivors about strokes, my recovery, and the life of the new me.
In other words, I’m trying to make the new me into a person that makes me proud and does some good.