My friend Michie and I were hanging out not long ago, talking about topics we often cover: Portland restaurants, art, books, her death wishes.
You know, the usual stuff.
Michie is not morbid. It’s just that she needs to think about the end of her life and make her wishes known. She’s not actively dying (as they say in the biz), but her eventual demise is likely to be complicated and, perhaps, precipitous. She has a condition known as neurofibromatosis-2, or NF2. Basically, tumors grow on her brain and spine. She has had eight major neurosurgeries in her life. Tumors are removed, but they are persistent little bastards. They grow back. She was partially paralyzed by one of the surgeries. She lost her hearing in her 30s. Both her mother and brother died young from NF2. Her closest immediate family is three cousins who live in the South. She wants to be prepared.
I have written about Michie in the past. I profiled her life as a deaf and disabled cyclist (“Ticket to Ride,” December 2013). Despite the fact she couldn’t hear and couldn’t walk without the use of orthotics and trekking poles, she sported around town on her recumbent trike, flags and whirligigs twirling behind her. She pedaled from her condo on the Western Prom to Whole Foods to do her shopping. She met friends for lunch. She took long rides, journeying on occasion as far as Old Orchard Beach. For the story, I spent an afternoon cycling around Portland with her, marveling at her derring-do and grace as she navigated busy city streets. When I asked if she didn’t get nervous, she said with a sly smile, “If people get mad and honk, I can’t hear them.”
Oh, did I mention that Michie has a wicked sense of humor?
I also wrote about what it was like to accompany her to Boston for medical appointments and one of her surgeries (Outta My Yard, Jan. 2015). Home base there for her is the Liberty, a boutique hotel next door to Mass General. We take the train. We sip champagne in the lobby; we dine at the bar, where the staff trips over each other to greet Miss O’Day; we overnight in the posh rooms. It’s really a lot of fun — except, of course, for the having-your-spine-sliced-open part.
Michie faces her losses head-on. When she could no longer work, she moved from D.C. to Stonington, Maine, and took up painting. When she could no longer drive, and thus had to leave Stonington, she bought a Victorian condo in Portland’s West End. When that condo eventually proved unsuited for her needs, she found a more accessible one on the East End. When tremors in her hands made it impossible to hold a paintbrush, she took up digital painting. When she became permanently confined to a wheelchair, she tried a pedal model that she named Blondie. When Blondie didn’t work out and she had to order a motorized wheelchair, she made sure it would have a seat she could raise and lower, since she likes to sit at the bar — where the action is — when she goes out to eat.
Last fall, in a year in which she had already undergone two neurosurgeries, Michie decided to take herself on vacation. Not any vacation, mind you. This was a dip-into-her-IRA and blow-out-all-the-stops one. Did she choose a European city with museums stuffed with art? Or a Tahitian island? No. Michie chose a resort on a godforsaken hunk of rock off the coast of Newfoundland, called Fogo. She assessed the cost (high) and determined she could afford to go in 2017. Then she assessed her mobility (failing) and said to hell with that. She booked her room for November.
Here’s how she described the place in an e-mail: “The view out my window for 8 days has been magnificent slabs of granite and the powerful North Atlantic Ocean. It’s just me, the earth and sky. But it’s not uncivilized! A gin and tonic with ice made from the millions-of-years-old icebergs that float by Fogo Island each spring is a marvelous thing.”
When we sit around, she often calculates how many trips she can make to Fogo before her money runs out. For a time, she thought she might want to die there — wander out onto the frozen tundra in a black cloak and fall asleep, like some sort of Grim Reaper/chiaroscuro installation piece. But then, she said, she considered her mobility issues. How would she get out there without assistance of some sort? There was also the matter of someone having to discover her body. She thought about pinning a note to herself that read, “Sorry for the inconvenience,” but ultimately decided such an end would be bad form.
So her new plan is to die at home, with her bed in the center of her open-concept condo, so she can entertain guests until the end. She wants a view of the park out her window, but also wants to be able to see her favorite paintings, particularly those of her beloved service dog, Doc. She never replaced him after he died, but she says that when she goes, she wants a dog curled up on her chest.
Michie told me she is going to leave me her art journals. She said to do with them as I wish — just be sure to excise the gossipy bits if they go public. She has gifted me other things during our friendship: a blue Le Creuset baking dish (she can no longer cook), a pair of whirly silver wire earrings from the Portland Museum of Art’s gift shop (she can no longer steady her hand enough to put them on), the aforementioned fancy black cloak from a shop in the Old Port (she says the lines of the garment are lost when she’s sitting in her wheelchair), and two high-tech cycling jackets (the trike also had to go). Some people might find this arrangement depressing, but it gives us both pleasure. She has excellent taste and I hate to shop. After heaving and cleaving to so many of my mother’s things, I’m happy to give Michie’s possessions a good home.
Sometimes when we discuss death, the talk turns to faith. While she doesn’t have much use for organized religion, she has been surprised by how much comfort she has taken in the notion of God. He even spoke to her. “Right in there,” she told me, gesturing to the guest bathroom. “He materialized in front of me in a white light and said, ‘I’m here to get you through this.’”
I sort of consider that my bathroom, so I keep an eye over my shoulder when I’m washing my hands.
The note she sent from Fogo also referenced faith:
I’ll leave Fogo Island on Tuesday after nine amazing, wonderful, restorative and healing days. Living with NF2 is both a challenge and an opportunity. I’ve said since the early days (I was diagnosed 31 years ago), it shows you the stuff you’re made of. I’ve also said that God didn’t give me NF2 (my god is a loving god and just wouldn’t do this to me), but he did give me the tools I need to live with it. I’m optimistic, resilient, funny and most of all pragmatic — all essential traits for dealing with the endless tests, the uncertainties, the long and painful surgeries, the life-altering and progressive disabilities that come with the NF2 territory.
Sure it’s tough, but it’s the only life I know. It’s also been my ticket to early retirement and my incentive to move to Maine, where I’ve been very happy and matured as an artist. NF2 has given me perspective and peace; and it has introduced me to some of the finest people I’ve ever met.
I’ve been painting here. I’m going to go home and paint a lot more. I’ve also been doing chair yoga. I’m going to go home and take better care of my body. I know that my disabilities are likely to get worse, but I’m not giving up yet.
I’m renewed and I’m happy.
With zest for living,
I pay attention when Michie and I have these conversations, because my friend is witty and wise, and I might learn a thing or two. I pay attention because she makes me laugh. And I pay attention because I didn’t get the end of my mom’s life right. I was so busy trying to micromanage her decline and rescue her from old age that I didn’t pay attention to what she wanted. I was so busy looking for answers that I ignored the ones right in front of me.
So, if I’m around — and believe you me, I never for one moment assume Michie will go first; you never know when the Almighty might get itchy around the roulette table — I want to help get the end of her life right.
And if she needs that cloak back, it’s right here in my closet.
Elizabeth Peavey’s column appears here each month. To see Michie O’Day’s gorgeous paintings, go to michieoday.com.