“Recovery” vs “Transition” and “Progress” vs “Momentum” by Paul Burns
I hate the words “recovery” and “progress” when talking about dealing with the aftermath of a stroke. This is probably a controversial view, as many people will point out that “recovery means different things to different people”. For me, therein lies the problem. A quick google on the definition of “recovery” results in:
“the act or process of becoming healthy after an illness or injury : the act or process of recovering. The act or process of returning to a normal state after a period of difficulty. The return of something that has been lost, stolen, etc.”
This is certainly how I viewed it in the early days, post-event. Recovery was a destination that I could get to if I just put in the work and listened to those who were the experts. Failing that, I was going to adopt the attitude of “If nothing else works, a total pig-headed unwillingness to look facts in the face will see us through.” (thanks General Melchett). Very early, post event, I woke up in hospital and declared to the staff who were there (and I was under the influence of some proper pain meds)…”I’m not worried, I’ll be back to work in a couple of weeks”. Some weeks later when the ambulance guys turned up to transfer me to the rehab hospital with a bed on wheels, I demanded a gutter frame as “I was bloody well walking out of here!!”
“Out of the way, everyone!! I’m recovering!!!!” I screamed at the world whilst holding the proverbial middle finger to whomever had handed me a brain injury with a wife, 4 year old and 3 month old baby at home.
Fortunately for me, ambulance guys are not to be messed with. Neither are nurses, but that’s another story.
In rehab, I was linked in with the very best of care and support. I set goals, was encouraged to congratulate myself on the progress I made, post injury, and accept things as best I could. But to me, that didn’t count as I was still damaged and therefore diminished. I hadn’t “recovered”, and probably wasn’t going to and it still didn’t sit right. 2 years later, I was still making excuses to people for my shortfalls, even if they didn’t see them (most of my permanent souvenirs are invisible). I couldn’t do the things I used to do and therefore wasn’t the person I was. I was, a broken version of it. My self-esteem was correspondingly broken. “My kids will never remember me when I was smart” were some of the more interesting thoughts I’ve had.
This persisted to quite recently until a chat with another survivor made something “click” and made me appreciate that for me, the terms “Recovery” and “Progress” just didn’t cut it. It was the wrong focus that led me down a rabbit hole of my own making.
This focus with “Recovery” was doing me wrong, and my post stroke “Progress” wasn’t something I felt overly proud of. I had about as much chance of going back to “pre injury me” as we do of going back to “pre-Covid normal”. I am different. Like anyone is after experiencing a life changing event. Be it suffering brain injury, learning to live in another culture, getting a divorce, or even just having kids. I have many, many cognitive weaknesses, sure. I also have some strengths that the life experiences and insight associated with an event like this has given me. It occurred to me, that my weaknesses are as about as much as a reflection on me now, as if you judged the world’s best chess player on their javelin throwing skills. For two years, I’ve been trying to shove what is now a square peg in a decidedly round hole. The peg used to be round and so I was still hanging onto the identity that I’m a round peg.
…Todays 3:15 service to retirement will now be diverted due to damage to the tracks….we apologise for any inconvenience this may cause. Have a nice life.
Perhaps, what I needed was not help with managing “recovery” (in the strictest sense of the definition) but help with managing “transition”. Work on mitigating weaknesses, definitely. More importantly, focus on finding new strengths. Focussing less on “progress”, more on “momentum”. When it’s not clear where you are going to end up, focussing on momentum gives you the flexibility to change goals and plans as you discover new things, whilst still getting those wins that improve your self-esteem. Goal focus can lead to disappointment, sometimes even when you achieve them. For me, working out what this new person is about, rather than continually comparing myself to the old person is the only way to move forward.
Visit Pauls blog to read more posts from Paul
Visit the Young Stroke Project website to sign up and find out how you can get involved
Read more about Paul Burns and his involvement on the Lived Experience Working group