A few weeks ago -- to "celebrate" Brain Injury Awareness Month (March), Brain Injury Voices (the BI advocacy group of which I'm a member) held a resource fair of sorts at the rehab, including a panel discussion and tables displaying tools of the trade (I showed off some Assistive Technology like my one-handed nail clipper and Dragon Naturally Speaking) and spoils of war (some members have published books or created impressive works of art).
I also participated in the panel, entitled You Can Get There from Here (a twist on the common Maine expression, "Oh, you can't get they-ah from he-yah". The idea was to demonstrate different approaches to navigating brain injury recovery. My focus was on regaining independence, especially through use of Assistive Technology.
It was a structured conversation, and I followed a pretty firm outline; so I thought it would be enlightening to publish those notes here. After all, this blog has been a key Assistive tool in my recovery. I've pasted my talking points below, sub-headed with the questions our moderator asked and elaborated on [in brackets]. The experience was a nice reminder of how far I've come and hopefully gave other survivors hope for their futures.
1. Brief Introductions
· In
the fall of 2010, I was a 40-year-old father of two young boys, husband, and computer
nerd when I learned…[aneurysm, stroke, yada, yada, yada].
· My
focus is on how Assistive Technology has helped me compensate for my deficits
and regain a sense of independence for myself as an individual and as a
caregiver to my family.
2. Moderator asks each panelist, “How did you start?”
· One
always starts with a choice of whether to accept or resist a challenge. Initially,
I did choose to accept but have
admittedly struggled with what’s often felt like a shove to reclaim my old life: getting back home, not being a burden
to my family, and returning to work (since I’d been the sole bread winner) –
meaning it sometimes felt like I had to abide by choices being made for me by family,
doctors, and my old self.
The
beginning – acute rehab – was easiest, because it had those explicit goals in
mind – but in retrospect it was also hardest, because it lacked the insight of
perspective on my predicament, perspective that's only come with time.
Over
time, I've focused on my strengths to ease back into my 2.4 kids/white picket
fence life:
- Problem
solving
- Troubleshooting
- Using
Technology to help me adapt
- Writing
to give myself a voice and keep people informed of acute medical news and progress
3. Moderator asks each panelist, “What were the challenges/distractions?"
Getting back to and staying at work in order to support my
family has been my biggest challenge.
·
Because
my job is primarily computer based and my employer was flexible (gave me time to
complete in- and out-patient therapy), working from home was a good way to
transition back to work, but I couldn’t fully return to work in the office without
being driven or regaining my license:
- I relied
on co-workers to carpool.
- I had my car modified for one-handed driving and took my test after a year and a half.
- [showed spinner knob and reminded audience I'd have more Assistive Technology that's helped me compensate on display after the panel discussion].
My physical deficits have generally been easier for co-workers to understand and accept, while over time I’ve struggled to educate them about my less visible challenges surrounding focus, fatigue, motivation, and filtering (in and out) – which means I may say inappropriate things at appropriate times and appropriate things at inappropriate times [and, I assume, sometimes, appropriate things at appropriate times and inappropriate things at inappropriate times].
4. Moderator asks panel “How did you get ‘here’ from ‘there’?”
First, I had to realize that “there” as a destination is a moving target and that being comfortable with “here” as a destination is most important. As Buckaroo Banzai said, “No matter where you go, there you are.”
Lack of Independence for me has often been tied to limitations of my left arm and hand and balance, so assistive technology has helped me compensate [I’ll have many items on display after the panel discussion], but Goal setting, practice, trial & error, adaptation, acceptance, and persistence have also been key.
For example:
·
- I decided
that carrying something from the kitchen to the family room -- without my
cane -- was an important goal and worked toward that and achieved it with
relatively few spills.
- In order to get myself dressed and ready for work on time each day, I had to teach myself to take the time and push through the frustration of doing it all one handed.
- I also had to adjust my expectations and be willing to accept mis-buttoned
shirts and backwards underwear sometimes.
- Giving myself extra time to complete tasks and/or get where I'm going makes my life easier and safer:
- In 2014 I finished the mile-and-a-half Maine Aneurysm Walk about an hour after all other
participants had gone home. In 2015 I asked the
organizers if I could start an hour and a half early. And that’s how -- in one year, with little training but lots of humility and adjusted expectations -- I went from
last place to first.
5. End with a wisdom statement by each participant
Hope
for the best; find a way to make the worst work best for you.
