I wrote the first draft of this post in a way I rarely write anymore: On paper, with a pen. When I began writing, as a girl, that was the way of all first drafts; through my childhood and teen years I had a large, hard, permanently red bump on the first knuckle of the finger my pen pressed against; a remnant of it remains, a permanent disfigurement that is evidence of something I’ve always been compelled to do.
I picked up a pen because I was on a third day of avoiding screens, a third day of trying to muddle through work with a multiple-day migraine. In my migraine, there are various factors always at play: work, screens, stress, meds, sleep, rest, hydration, exercise, food. Trying to figure out exactly how to put these together is like trying to solve a Sudoku puzzle. Maybe I can get one line to work, but I can never get the whole box to add up correctly. If I take off work to avoid screens, I increase stress from falling further behind. If I exercise when fatigued, I can trigger an episode, but if I don’t exercise I don’t sleep well, which can also trigger an episode. If I spend Sunday in food prep for the week I know I will eat well on work days, but I might end Sunday fatigued rather than rested, and stressed about other things I didn’t get to do.
I picked up a pen because I couldn’t sit in front of a keyboard and computer screen, but I wanted to capture something from Katherine May’s Wintering (referenced in last week’s post):
“The very permanence of the label–of having a brain that just happened to work in a certain way–was my salvation. I had to adapt. I had to surrender. The only thing breaking me was pretending to be like everyone else” (p. 183)
I have spent most of my life powering through. Powering through was my super-power. As a young adult, I did not understand those who said there were things they did not have the capacity to do; in my world view, one just did what had to be done, whatever it was, whatever it took to do it. When I was teaching full-time and raising twin toddlers and a teen, people would say, “How do you do it?” or, “I could never do what you do!” and I would think (or sometimes say): I don’t really have a choice. In my mind, in my life, there wasn’t a choice. I was doing what had to be done.
(Of course, I see now that there were choices. There are always choices. The ones available to me, though, would have required sacrifices I wouldn’t make.)
For a time, in those years, I would get up at 4:00 to either write or walk on a treadmill before my babies woke up. We’d get ourselves off to school/daycare, where I would maximize every minute of the day until it was time to leave to pick up the kids. The evening would be spent in dinner/bath/bedtime, and after I’d gotten them tucked in I would work for a few hours more to prepare for the next day’s classes, until I went to bed. I powered through, for years.
Now, I can’t.
I don’t have May’s autism diagnosis (although I may just be undiagnosed), but I’ve got others that indicate a body/brain that doesn’t work in typical ways: chronic migraine, anxiety, fibromyalgia, eczema, endometriosis, polycystic ovarian syndrome, restless leg syndrome, insomnia. My startle reflex is comical, and I have difficulty with many types of sound and light. Most of the time, I cannot tolerate direct eye contact. I wear a mouth guard at night because I would otherwise break my teeth in my sleep. A person close to me has likened my brain to a computer hard drive that never stops spinning and overheats. I feel ridiculously sensitive to stimulation of all kinds. I’m often unaware of the physical and mental agitation I’m feeling until the source of stimulation ceases; yesterday, Cane turned the radio down in the car and I felt a flood of relief I hadn’t known I needed until I felt it.
In my life, I’ve seen myriad doctors (western, naturopathic, wholistic) from a variety of specialties. I’ve tried different diets, supplements, and medications. I’ve had multiple therapists. I gave up work (both teaching and writing) I loved and was good at. Nothing has really worked. The only thing that has brought consistent relief is a slower life–the life I live during breaks from school.
I don’t know why some of us need to see someone’s else’s words, someone else’s experience, to accept the truth of our own, but I am one of those people. May’s words crystallized a truth I’ve been working my way to for some time now: My life isn’t working for me, and, in important ways, never really has. It is not sustainable, and it is not something I can will my way to being different because I cannot will myself to be different. In the words of Popeye, “I yam what I yam”–and who I am simply cannot do what I think I should be able to. Not any more. Not for what it has always cost me.
At this stage of my game, it is disorienting and difficult and frightening to accept a fundamentally different view of myself. It is also liberating.
For so long, I have seen my difficulty to manage things others seem able to as a failing. The first step of any recovery program (yes, I did that, too), is to accept powerlessness. It seems I have to learn, again and again, the paradoxical truth that power comes from accepting powerlessness. Accepting where we are powerless is crucial to finding where we are not. This week, I have understood in some new way that I am powerless to change whatever it is that makes me the way I am, and accepting that gives me space to create a new idea about who I am and what I can be–and that is freeing. Instead of seeing my difficulty to manage as failure, I can see my ability to function as well as I have as, instead, a kind of strength. Instead of focusing on all the things I haven’t done or have failed at, I can marvel at all that I have done in spite of who I am. Today, my 56th birthday in this year of our pandemic–which has blown so many things open–I am finally beginning to see surrender and radical acceptance of truths I don’t like as a different type of strength, one I now need to embrace.
My task for the coming year–my gift to myself–is to find adaptations that will work for the person I actually am. First steps never have to be big ones. This week, that project for me began the way so many things in my life have: I picked up a pen and started writing.