Barry Jackson - Dealing With Life After A Stroke: “Who Am I Now?”
Barry Jackson, a stroke survivor, is a patient Co-Principal Investigator on the C3FIT study run by Dr. Ken Gaines of Vanderbilt University and funded by PCORI. He lives in Rockville, MD with wife and two daughters, two cats, a dog and assorted fish.
Eight years ago, at age 38, I was an outgoing person, active in my community and professionally. I enjoyed driving my Jeep, piggybacking my two small daughters, running, cycling and weightlifting.
All of which changed in a matter of moments when I suffered a stroke over eight years ago.
I spent time in the hospital, and then about six months in rehabilitation – learning how to swallow again, how to speak, how to walk and use my right arm.
Honestly, it felt like my world had been ripped away. What was left was this nightmare existence. Except I couldn’t wake up. It was real.
How do you adjust to not being able to talk normally? How you struggle to find the right word? How you can’t lift your kids? Or drive? How you can’t even open a can of soup without help because you can’t use your right hand?
The answer, as I found out, was not well. I think when you suffer a traumatic event, regardless of what it is, you come out of it changed or altered. Angry. Depressed. Sad.
I retreated into myself. I stopped talking on the phone preferring email, stopped going to meetings, stopped speaking up and participating because I hated the sound of my voice and how I struggled for words. I even looked forward to going to sleep every night - at least I didn’t have to deal with reality for a few hours.
I have heard that recovery takes about a year, or at least that most all of what you will recover will be in that first year. Maybe that is true, in that you regain function that first year and then improvements are harder and harder to come by.
But what I have learned is you never stop recovering.
I’ve worked in the years after my stroke to continue to make progress. I drive again. I run again, more slowly than I would like and not as far as I want, but it is running. I lifted my daughters on my shoulders and walked them around. And yes, I can open a soup can.
I think it is a stroke survivor’s mental self that takes longer to come back. I know it was in my case. To pick up the phone instead of emailing, step into a meeting, lead a discussion, or speak up. And I have volunteered for the American Heart Association/American Stroke Association and been recently asked by Dr. Ken Gaines to become his patient Co-Principal Investigator in the C3FIT study out of Vanderbilt University – a study to determine whether home-based therapies or traditional outpatient therapies have more positive outcomes.
If I have one regret, it is not finding a support group, or someone professional to talk to. Hopefully, other stroke victims in similar situations will make a call or an email and find someone to talk to.
It doesn’t mean I am not still angry. It doesn’t mean that I’m not still afraid. But now I try to turn those feelings to more positive ends. It has been eight years since my stroke and I don’t mind saying I still have some recovery to do.
