A Beacon: We’re in here

Delusions can distort reality, but if you’re lucky, your loved ones know this.

—Mari Fielder

I had been wronged. The actual “what” is as immaterial now as it was then. After an exceptionally hard day, my wife greeted me with a barb that wounded me to my core. I built a good head of froth over it, and finally it all spilled over, and I made my injury known. I felt I was stating myself evenly, but if you’ve read any of these columns before, you’ve probably gathered that’s not what I did. In fact, there was no barb, and I made a complete ass out of myself and said some really hurtful things. Things I don’t actually feel, except in that moment, when some errant process of my brain decided I did.

In that moment, I was speaking my truth, and I would be heard. How could she have treated me like this? That should have been more of a sticking point. It was so unlike her, not at all the person I knew her to be. There was a struggle there, my first inklings creeping in, but the power of the delusion was simply too great. I went to her, started to apologize, to own it, and the thing in my head just turned it around into an attack again. The delusion distorted anything I said or thought or did to suit its design.

Finally, after a violent internal struggle, I managed to come up for air, and began to apologize to my unfairly maligned wife, but she just held onto me. She was glad to have me back, proud that I’d beaten the episode. My words had been decidedly unkind, and their sting remained, but she shrugged it off, as one might the claw marks from their affectionate cat. She stood by me, as she always has. God, I hope I’m worth it.

I think of my Great-Aunt Lallie, better known as Alvida. My wife and I cared for her for eight years, and though we had our good times and bad, that last year was the hardest for me. I came over to make her dinner one night, and found her in a state of very relatable confusion. Overnight, she had become delirious, exhibiting many of the symptoms I know so well. Over time she developed a number of consistent delusions, and saw extremely interesting visuals she would relay to me in utter fascination. Of course, it also led to substantial frustration, to say nothing of dread, when she’d have a moment of clarity. In one such moment, she asked if this was what it was like to be me. I said it was pretty close. She said that maybe it was important for her to experience this, so she’d truly understand me. It was one of the last lucid conversations we’d have.

Jake’s a long-time Daybreaker, a scholar and a philosopher. His mind is like a prism, focused at the right angle, but a scatter of light from any other. A kind soul, who’d wish harm on no one. Then, during a relatively uneventful Daybreak afternoon, Jake wrenched violently up from his latest book, gripping it and howling in agony. Jake was having a seizure. Bad one, too. J.P. was on the phone to 911 immediately, while I kept watch over Jake. Once the seizure was over, he was like the biblical man possessed. The EMTs arrived as I was beginning to calm him, and then they tried to put him on the stretcher. He proceeded to throw three EMTs and one police officer around like children’s toys, shouting half-wordlessly. I stepped in at that point, with a mixture of gentle empathy and brute strength. We got him on the stretcher, and the EMTs said they needed me with Jake.

Incoherent wailing, a swarm of EMTs around a bound body strapped down securely to a stretcher; this was the stuff of my nightmares. I was there for Jake, comforting him, but the situation was bearing down on me. In an unguarded moment, I buried my face in my hands, desperate for an escape from its horrible familiarity. It was then a hand took one of my wrists. I was too surprised to resist, as Jake squeezed my hand, saying “It’s OK.”
Jake, as is common, had no memory of any of this, and I told him everything. He replied, “I knew it must’ve been hard for you.”

As my Aunt Lallie slipped further, she was less and less present. It grew discouraging trying to reach her. Eventually, through persistence, she found her way back to me, and we exchanged our goodbyes. Through the noise and the confusion, the delusions and free-wheeling emotions, it can be easy to forget, but we’re in here, trying to come up for air. In that struggle, it can be much easier if someone takes your hand.

Matthew Fielder lives in West Tisbury with his wife Mari. He is a staff member at Daybreak Clubhouse, and a caregiver to his grandmother. 

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 July 28, starting at 11:30 am, at the First Baptist Church Parish Hall, 66 William St., Vineyard Haven. Visit daybreakclubhouse.wordpress.com for more information on M.V. Community Services’ Daybreak Clubhouse.