A Beacon: Between worlds

The thread that binds us binds all.

—Mari Fielder

The starkness of my new mental wellness still overwhelms me. Electroconvulsive therapy definitely seems like something worth looking into, though few people experience it as the panacea it has proven for me. It feels disingenuous to recommend it to others, like getting financial advice from someone who won the lottery. Step one: Be extremely lucky.

The bipolar is still here somewhere. I am experiencing no symptoms, so the feeling is hard to explain, but I am certain of it. It is an intrinsic part of me, and will only die when I do. It sleeps, but I think it must certainly return. In the past, I tried to make myself ready for each new cycle, but like those doomsday preppers, the end of your world is more complicated than how many cans of brown meat you have in the basement.

It is a curious thing, standing on two worlds. I may no longer tidily fit into the “crazy” column, but to make some broad declaration of total sanity seems a stretch. Even so, it is strange to lack this common thread I shared for so long with our members at Daybreak, living with an active mental illness.

They do not all share my flavor of neuroatypicality, and our lived experiences can be radically different, but these are my people, and this shared struggle is our covenant. A common theme of our fellowship is how poorly understood this struggle is. I have heard so many neurotypical people shocked that we might go off our medications.

I had this one antipsychotic that liked to shut down half my body. Half my face sagged, without expression, and I drooled out of the side of my mouth I couldn’t quite keep closed. I often walked a bit like Igor from “Young Frankenstein,” using the good half of my body to haul the bad half along with me. I was on this anti-seizure medication, which gave me something the old-heads called “brain zaps.” Without warning, you would experience the sensation of a brief, violent electric shock that felt like it was happening inside your skull. I woke up with a short, loud scream a few nights a week while I took it.

There is much about our typical experience that is poorly understood, but I consider the medication issue a cornerstone of that. Think about all those people we know who keep talking about needing to exercise, but they don’t. Thirty minutes of mild to moderate discomfort several times a week, a gym membership utterly going to waste month after month, but it doesn’t happen. And those same people wonder why we don’t cheerfully suffer every hour of every day. Fatigue, confusion, physical discomfort, dead libidos, and often profound issues with sleep, appetite, effort, focus, and emotion. We throw all that on the fire, without even a guarantee of lasting warmth.

The Pyrrhic victory of achieving some small wellness at such a cost defines our struggle. It is not the drugs. It is everything. If we are even able to get ourselves that far, we must put our lives on these unforgiving scales, trading away pieces of ourselves in exchange for gaining entry into a society that largely prefers our absence. For many of us, a sustainable effort is often insufficient, and so we habitually spend more of us than we can afford to part with. When life brings balance to bear, we find ourselves coming up short in some way.

The pinnacle of our success is not merely to do all this, but to do it invisibly. This struggle typically makes people very uncomfortable. You either keep it vague, and leave people wondering if you’re just making excuses —or lazy — or you tell people why you’re having such a hard time. Often, that admission puts you squarely in the “crazy” column. For many, that is all you will ever be, the nuances of your character lost behind the societal convenience of a label. In this way, even doing what you are supposed to do, seeking support, finding help, can still be a double-edged sword.

I may not be able to share in their difficulties in the same way as before, but I still remember what weight they labor beneath. If you have never lived in that world, you will never be able to understand it as we do. My experiences help, but they aren’t omniscience. Understanding is an eternal pursuit. Easier for me to see myself in these people, but it takes work. Understanding is the light that will pull the curtains of these divisions aside, revealing the essential truth: You are us, and we are you. An electric current to the brain allowed me into your world. It might not take as much as you think to find yourself in ours.

Matthew Fielder lives in West Tisbury with his wife Mari. He is a staff member at Daybreak Clubhouse. Visit daybreakclubhouse.wordpress.com for more information on M.V. Community Services’ Daybreak Clubhouse.

Daybreak helps run Serving Hands, a monthly food distribution where food is donated by Island businesses, including Cronig’s Market and Island Grown Initiative, as well as ordered through the Greater Boston Food Bank. The next one is April 26, starting at 11:30 am, at the First Baptist Church Parish Hall, 66 William St., Vineyard Haven.