This is part 4 of a 4-part series on anger, an emotion common to most people with disabilities, hidden or in plain view. The first post, https://blogs.psychcentral.com/hidden-disabilities/2018/09/the-anger-series-post-1-tv-and-movie-tropes/, talked about the way our anger is handled in TV and movies. The second post, https://blogs.psychcentral.com/hidden-disabilities/2018/10/the-anger-series-post-2-whats-your-anger-style/, explored the different ways we process anger. Last week’s third post, https://blogs.psychcentral.com/hidden-disabilities/2018/10/the-anger-series-post-3-lets-get-personal/, was about my personal experience with anger, and I invited you to share about your own. It’s not too late—share something if you want to. This week, we are shifting to the aftermath of anger, reinvention. This is where we pick up the pieces and put together something new.
I have enough material on my own process to fill up my word quota and then some, but first I’d like to share this wonderful video by my friend Heather Thompson. Heather was not an artist before her traumatic brain injury; her artwork emerged as her brain formed new nerve pathways during her recovery. Her “before and after” lives contrast more than my own. She tells her story and shows her gorgeous art work in this stirring piece. https://www.youtube.com/watch?v=H9Cg-pEMgh0&feature=share Heather is an inspiration to me—sorry, Heather, I know how embarrassing/annoying it is to hear that, but it’s true. Respect, sister! (fist bump)
I’m not sure if my reinvention was made easier or harder by the fact that a year before I was hit, I was suddenly let go by the company I’d been with for 6 years. That meant I was already working from home, which definitely made the transition easier from a logistical standpoint, but I think psychologically, the double whammy made it much harder. My new ground felt very unstable and I had no reason to think anything I did was going to “take.” Maybe that’s why, after my first year of basic rehab, I obsessively did everything I normally do, as if inspecting my house after a hurricane, making sure every room was still there. I attended all the usual seasonal events for a shorter time, returned to my volunteer work in shorter shifts, and went back to playing pub trivia at quieter venues that started earlier in the evening. I needed those touchstones because my life was beginning to resemble the football in a Peanuts cartoon.
Everything I did increased my pain level, and I had to cherry-pick what was still important to do and what I wanted to let go. There was a group bike ride I did every year, and I went again knowing I couldn’t ride the full distance, but I offered to drive the support truck for half the “legs” of the ride. The other riders were racers and sport riders—riders who adopt lightweight racer equipment and use support vehicles for rides longer than a day. I felt more distant from them than I already did, being a tour rider who carries bags and prefers a more sedate pace. The overnight was an ordeal and I decided that was a ride I didn’t need to keep doing.
My first proper bike tour was my ultimate rehab goal—while still on a respirator, I promised myself a trip to Free Spirit Spheres in Qualicum Beach, BC if I could get back on my bike. A year later, I set out on that trip. I wasn’t really ready physically, but I made it there in 2 days, bunking out in the Nanaimo hostel the first night out. That was a huge milestone, and I was welcomed at Free Spirit more warmly than I ever imagined. I return every summer and I’ve become good friends with the family who owns the resort.
I discovered that my touring range was not going to return to what it used to be—no more 85-mile days for me. My record ride since I was hit is 52 miles, and I threw up when I reached the end. I plan my bike tours for 25-to-40-mile days. That still takes me hours longer than it would have BC—Before Crash—but nonetheless leaves me with more time to spend at my destinations in the evening. No checking into hostels at 7 PM and going to bed by 9, I’m checked in for the night by 4 PM. I had to learn a new style of touring that did not come naturally—making friends in the hostels and towns, eating and spending the evenings with other people. I began to form new, lasting friendships with people who didn’t know me “BC.” I feel closer to those friends somehow, as if they know me better than the ones who still see the original me and have to constantly remind themselves that I changed.
The hardest part of my reinvention happened at work. I was in the middle of a huge project when I was hit. We were building the Seattle Great Wheel on Pier 57 and I was in charge of the environmental permits. I had all the project’s institutional knowledge packed in my injured brain, so at first the project team couldn’t do enough to accommodate me. I remember once, 8 people who were more important than me changed their schedules to meet later in the day so I could come down to Seattle on the train. (I still have trouble driving long distances; back then it was impossible.)
My job involved a lot of hard negotiation, and I discovered that my painkillers took down my filter. I was shocked at the things I said, but no one else seemed to be, and our project moved forward fast. After I ramped down to a lower dose, the boldness remained, made habit by positive reinforcement.
After the Ferris wheel opened, I discovered that the world would not rearrange itself for my convenience any more. We were all starting from the same point; I didn’t have any extra institutional knowledge to hold hostage. I found myself working far fewer hours and having to do a lot of unpaid marketing to drum up new work. Working from home was going to be a hardscrabble way to make a living. Every time I had to go in to the office for a day, though, it took me days to recover. I knew an on-site job was not going to be an option.
Along with the downside of working from home, I realized how much more alert I felt when I was able to sleep when I was tired, even if that was at 2:00 in the afternoon, and wake up when I was fully rested. I live in a condo with neighbors on 3 sides, and I led my pre-crash life in a state of constant sleep deprivation. Now there was no more making a fresh pot of coffee at 3:00, I just took a 20-minute nap. I wasn’t willing to give up this healthier way of managing my day. I need time in the early afternoon to do my exercise, too, and it can’t wait until evening. I have nothing left to give it by then and it’s damaging to force it at that point.
I’ve tried lots of supplemental gigs, selling my handmade jewelry, sewing marine boat cushions, and I wrote a book in the hours I was without work in 2013-14. The first draft ended with the opening of the Ferris wheel and a Pollyanna speech about how I wasn’t limited by what happened to me. That ending even ticked me off, because it wasn’t realistic. Of course I had limitations to work around, and I was discovering fresh new barriers at every turn. It didn’t really sink in how much things had changed until after my book was out on the shelves. I thought my readers might be disappointed in the aftermath, but so was I.
I got pretty down on myself until last summer when I met with a Facebook friend from an online group. I visited her in Victoria and we chatted while we enjoyed a resplendent vegan dinner at B Love. I said to Mela, “People don’t realize how hard it is to completely reinvent yourself without any safety net to tide you over. There should be an allowance for a few years to keep you going until you can get back on your feet.” Mela pondered this and said, “I think it would take me a minimum of 9 years to reinvent my life like that.” The specificity of the number 9 was comforting and validating.
It strikes me how little advocacy I’ve had and how much harder this has been than it needed to be. Before discharging me from the rehab program, I should have been connected with a social worker who could guide me to whatever services I needed. My lawyer should have made sure that charges against the driver were followed up on and that I had access to to state’s crime victims’ fund before closing my case. The people on my care team should have left me with long-term plans for followup care. Maybe I gave the impression of having it more together than I did; I tend to be the type who waves off the Band-aid for my skinned knee with an impatient “I’m fine” and hide my limp while the bruise blooms. It doesn’t relieve those people of their responsibility.
How has your life changed after acquiring your disability? How have you had to reinvent yourself? Do you have the support system you need? Tell me about your experience.