Invisible Fences: Life on the Borderline
My crash put me on many borderlines, belonging on neither side. I’m drawn to fish-out-of-water stories for this reason; I empathize with the scholarship student at the ivy-league college, the adopted child who looks different from the rest of the family, the “lost generation” stories of Native American residential schools. I’m drawn to people who don’t fit in boxes.
I live with a dominant hand that is severely damaged and lacks feeling in the outer fingers. My reconstructed wrist tires quickly and I take frequent breaks, even while writing these columns. I’ve never been interested in voice-to-keyboard software; the gifts for speaking and writing are in different areas of the language center of the brain. That is why we have great writers who would deliver their own speeches with no effect at all on their audience, and great orators who can’t write their way out of a paper bag. I’m a writer, not a speaker. I might be able to shift that emphasis over time, but I do well enough with it as it is right now. If I were in my 20s and not my 50s, I might rethink that.
I also have the hardest thing to prove to the Social Security Administration: back pain. I fractured my spine in 3 places. The sacral fracture actually improved an existing lower back pain issue; it healed at an angle that compensates for mild scoliosis. At T-9 and 10, I have adjacent compression fractures with a lot of associated nerve damage. I remain on pain medicine for that to this day. When the pain starts, it’s an electric, cramping pain that grows to feel like a metal fist gripping my spine. There is no powering through this pain; it drops me like a sack of doorknobs. When my spine reaches the end of its broadcast day, it doesn’t matter if it’s 10 AM or 10 PM, I’m done.
My hand and my spine limit my ability to work. I can do lots of things; I’ve written a book, every year I turn out a huge sewing project for the animal shelter where I volunteer, I plan and go on long bike trips, and I negotiated with regulatory officials to permit a giant Ferris wheel on the Seattle waterfront—I am by no means helpless. The hitch, though, is that I have about a 3-hour limit to anything I do before I have too much spinal pain, hand numbness, or mental fatigue to keep going. Even when the activity is self-directed, fun, and energizing, there’s a limit to how long I can keep it up before I need to move different body parts, change my mental landscape, or rest altogether.
When I work from home and bill by the hour, I take into account how slowed down I’ve been and adjust it accordingly. It usually takes me about an hour and a half to work a billable hour. This is why I can’t take my work to the office and be under supervision; what supervisor is going to accept me resting a third of the time?
There are many productive things I can do, make, and sell, the problem is finding people willing to pay for these things. When I see the rejections of my disability claims with their assertion that I can work, I want to punch a wall, but don’t even have a viable shoulder-to-fist link on either side do that with. I’m right on the borderline; I’m not helpless but not fully abled either. I’ll get there some day with the perfect mix of home-based activities to support myself; I just might lose the home base before I get there. Capitalism is an unforgiving system, and people in my situation need a few years of bailout income to help us find our feet while there’s still ground to plant them on. Some people don’t understand what’s taking me so long, and it’s easy to internalize that criticism. I felt heartened when my friend Mela said recently, “Wow, it would be hard to totally reinvent your life in seven years. It would take a few years to even know where to start.” She gets it.
I sit on other fences too; a few weeks ago I posted about needing to use ADA facilities when you don’t look like you need to. I know I’m lucky to be this high-functioning, but it can be frustrating to not fit in any box. On the one hand, it’s limiting; on the other, it’s liberating. Only I can define my own path. Some days that feels empowering, other days it feels terrifying.
Knowing that our issues are hidden, I bet a lot of you empathize with this life in the borderland. What are your stories? What are your roadblocks, and what have you overcome? Have you found any opportunities you might not have had if your life had gone as expected?
, . (2018). Invisible Fences: Life on the Borderline. Psych Central. Retrieved on April 22, 2018, from https://blogs.psychcentral.com/hidden-disabilities/2018/01/invisible-fences-life-on-the-borderline/