The Stroke Mentor: Coaching and Blogging with Wolfgang Wolf
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Have you heard that at 12 months after a brain injury you’ve recovered about as much as you’re going to? I have. I’ve met a lot of people who were told that too. I do presentations on current brain injury research, and guess what! I have some things to share with you on that 12 month thing. (This is not to be taken as medical advice. It’s an insight I’m sharing with you personally.)
- Lots of medical studies follow people up to 12 months after their injury. Of course there are some that look at people longer. But if many of our studies follow people for one year, then they really don’t know what happens after the one year mark, right? So don’t get down if you hear that it’s finished at 12 months. It doesn’t have to be. For many, it’s not. I have a friend who had a sudden breakthrough in his sensory processing 20 years after his TBI. I know someone who had a sudden breakthrough in using a semi-paralyzed arm 7 years after his stroke. The stories are many.
Recovery? It’s not only about the person with the brain injury recovering lost skills and brain function. The whole community has shifting and changing to do to accommodate them as the person learns their own accommodations. And all of us, peer with brain injury included, have many other things to look at in recovery besides skills: relationships; access to education, work, benefits, resources, and support; a sense of justice; pride; self-esteem; and community. All of those things truly are part of recovery even though things like walking, eating, communicating in a conventional way, and being organized get the most attention in all the talk about recovery.
I want to introduce you to an incredible resource, Wolfgang Wolf, who goes by the title The Stroke Mentor. And he is. There are several places to find Wolfgang online. I really love his blog. If you click on this sentence, you go straight to a post about rehabilitation, confidence, and allowing the person with brain injury to make decisions (which leads to more confidence).
Visit theglassishalffull.weebly.com to read posts. There are several there if you click the “more” tab at the top.
You can read about his mentoring and coaching work at wolfgangwolfthestrokementor.weebly.com.
And check out his Kindle book “How To Survive After A Stroke.” The original title, “I’m Not Stupid, Just Disabled” is a beautifully scathing, insightful nod to the ways in which disabled people are so often automatically considered to be unintelligent. I have been baby-talked to in public when I’ve used a wheelchair. (?) Add to that something like aphasia (where a stroke or brain injury makes communication much more difficult), and people really start to dismiss and devalue the person. Surviving after a stroke is not just about rehab or the medical aspects of survival and health. It is about the healing of communities and attitudes.
Let me leave you with some of Wolfgang’s own words about mentorship where he describes acquiring a disability as leaving your comfort zone without warning. I read this when he first posted it on his blog in January, 2014. It was a jaw-dropping read for me because he talks about the value of witnessing and walking with people. He doesn’t fall into the trap of telling you “Well, it worked for me, so here, you should eat/read/inhale/drink this too!”
He wrote, “Building a new comfort zone is not easy, because it means we have to venture out into the panic zone. This can be frightening. Anyone released from the relative safety of a hospital can relate to this somewhat unfounded fear. Consequently the born again citizen appreciates someone who holds his/her hand.
This is where a mentor comes in. Someone who has walked this road of recovery before. A road that is littered with potholes. The mentor does not repair them. Nor does he tell whether, or not, to walk around them. He just points them out. It is important that the person receiving the rehabilitation makes their own decision what to do with the potholes. The whole idea of rehabilitation is to regain control of one’s life.
Of course it is always good practice to smooth them over, or repair them, and hence, pave the ways for the next person that comes along.”
Thank you, Wolfgang. I would be lost without my various brain injury and disability mentors. And I am honored by your challenge that it’s my job now to walk with others.