Life is not perfect; this is not a tragedy.
Two years ago, before that summer, my life had its particular details, but anyone would have recognized its pattern of ups and downs as both familiar and normal. Then my mother-in-law’s diabetes dropped her into the hospital’s intensive care unit four times in three months. Jackie is her name. She had just turned 82 and had been living independently, even though her disease had begun taking its slow and steady toll, making her weaker, slower, and very irritated at all the things she could no longer do, or do easily. Now, suddenly, she was brittle.
That summer became a gauntlet of midnight runs to the emergency room followed by weeklong visits to the beeping sound-scape of the ICU. Jackie’s acute instability piled on top of her slow deterioration brought my wife Meredith to tears. Her mother had clearly reached the end of her ability to live on her own in her senior living community. Jackie was always a fiercely independent person, and the idea of stepping her up to a more medicalized living situation didn’t feel right.
“I think my mom should move in with us,” Meredith said.
Now, my relationship with my mother-in-law is much better than the standard, sit-com, husband–mother-in-law dynamic, so I was able to keep my concerns about this proposed plan adequately squelched, using the old trick of repeating the question: “So, you think your mom should move in with us, eh?” I said.
“Yes,” Meredith said. “She isn’t taking good care of herself and she’ll be much happier living with us instead of a place where the average age is 90 and they don’t know how to cook fish.”
“No doubt!” I agreed.
“And,” Meredith continued, “we need to pool our financial resources.”
Which was true, and I felt bad about that. The next evolution of my career was well underway, having entered the phase where you produce lots of material and make no money. My work history is another story, but there was always an endgame: to write. I am a writer. The good news, for me, is that my family — including Jackie — agree it is essential that I keep writing. Having family who believe in my ambition is a gift, and that gift made it easier for me to do the right thing.
So in December of 2012 we move my mother-in-law in with us. We give Jackie our bedroom. Our daughter was at college so Meredith and I move to her room, which is smaller. Much smaller. We make the biggest adjustment a couple should ever have to face: giving up our queen-sized bed to return to a standard double mattress. This specific down-sizing is more challenging than it sounds.
Our son moves to the garage — where my writing office was — and we cram all of our daughter’s belongings into her brother’s former-room along with my desk. Less space for me to work, but it had the essentials: a desk in a room with a door.
Now, writing is a quirky activity and in order to maintain the flow of ideas and output there are requirements. Sure, the option to work wearing only your underwear and a t-shirt is important, but that’s only an occasional need. The absolute requirement to write are long stretches of solitude with no external distractions.
Jackie didn’t demand lots of attention, but it took a while for me to ignore that there was another person in the house. Actually, I never got used to it. Fact is, even a low-key elder makes a lot of noise. We live in maybe 1400 square feet. The bass frequencies from her radio travel through the floor. My desk abutted her bathroom wall. People with diabetes pee a lot. Our toilet takes five minutes to fill after each flush. She is constantly cold. The temperature inside the house makes me want to deny global warming and buy an air conditioner just for me. She moves slowly through the house in halting steps because of the nerve damage to her legs from the diabetes. The padding of her feet through the house makes a bump/pause/bump rhythm — a sound effect from a haunted-house movie that affects me like the drip-drip-drip of a leaking faucet. My mind becomes one, big, attentional deficit, a stone that skitters over water only to sink into mud.
You should know that I tend to exaggerate, but, even so, everything I say is true. I don’t give up easily, so I remind myself that my circumstance is not a tragedy, that I am part of a family who is doing the right thing for this woman who not only made my lovely wife, but who also has done great things and who overcame many adversities, including adjusting to my personality. Jackie is actually a fan: she laughs at my jokes, loves my cooking, and admires my willfulness to do what I feel I must. Surely, for her, I can conquer petty nuisances using mind over matter.
And I did.
Then, she had a stroke.
The stroke left most of her speech in a pattern known as “word salad”, and also weakened her right side. When the hospital had done all it could for her she needed assistance and monitoring for every thing: getting dressed, going to the bathroom, bathing, preparing food, walking, eating, shooting up with insulin….
No way were we going to abandon her now.
Jackie returns home requiring a live-in caregiver — another person in our house all the time. The one pair of padding, haunted-house feet becomes two pairs of padding feet, now accompanied by the drag-drag-clank of a walker hitting the door jambs, the baseboards, and the furniture. The caregiver is sweet and kind. She also loves television game shows. I suspect she is somewhat hard of hearing.
A parade of home-care people cycle through the house: the physical therapist, the occupational therapist, the speech therapist, all of them trying to come up with ways for Jackie to rebuild neural pathways that were destroyed. I feel like I live in a hospital.
All the physical and mental space I need to write completely disappears.
At this point I did what I imagine most people would if in my situation: I bought a rotted-out 1959 Shasta Airflyte travel trailer for $500 and parked it in my driveway.
I remove the aluminum skin and store it along the fence in the back yard. I tear the travel trailer down to its rusted frame, throw out all the rotten wood and corroded wiring, scrape off the rust, and begin to rebuild it, the whole thing from sub-floor to roof including the furniture, the flooring, the electrical system. Rebuilding this trailer is all I will do every waking hour for six months. It is the most necessary and selfish act of my life thus far. I have stories I need to tell, visions in my head that need to become real, and without the space to create them, I will be nothing.
I am good at making things. At every stage of the trailer’s reincarnation it looks nice and attracts attention. The neighborhood loves it. People walk by and tell me what a great job I am doing. They are surprised I am not an architect; they say I am an artist; they love that I am going to keep the trailer in my driveway to be a writing studio. They smile and wave as they drive by, cheering as if the trailer is as important to the life and spirit of the neighborhood as it is to my own livelihood and happiness.
One evening, many weeks into the project, I am standing in the trailer absorbing its state at the time — I had remade the floor, and it is solid; the walls are up but there is no top between them yet, only the blue gradient of the summer evening sky. It is a perfect moment: I am surrounded by the golden glow of shellac on birch walls while above me there is no limit, the stars my destination.
Then I look back at the house, and part of me feels that I don’t live there anymore. I think about Jackie, inside, with life’s limitations closing in on her. And I feel a great sadness, and the guilt of neglect.
In my mania to resurrect the trailer into a rescue vehicle I had given up on chit-chat. I hadn’t made her laugh in months. I had stopped cooking. We were eating fine but all the special dishes and flavors I made for her were missing. I reflect, darkly, and find a part of myself who wished she would just hurry up and die so we can return to our lives.
Such thoughts are made for denial, which I don’t do very well. I’m better at deflecting and fantasizing. I imagine a character in a play or a movie, its story is this exact story. He says the wish out loud, and the audience, who had sympathized with the character’s plight, now has a flash of insight about how he’s got it all wrong: “That idiot doesn’t realize there is no such thing as having your life back. You’re either alive, or you’re not; and if you are, then the only choice is to make it work. Maybe try a little tenderness, you fool.”
One of the cliches I believe is that audiences are always right.
I go inside the house and sit next to Jackie, who is eating, slowly, awkwardly. There are specks of food on her face that make it difficult for me to look at her directly. Her eyes are glassy, red and tired, but they still radiate perception and curiosity.
I tell her about the way people are reacting to the trailer in the driveway, and how it is a source of neighborhood pride and admiration. I tell her about the kids who shout, “Wow” as they bike by. I tell Jackie these stories because she is a community-minded person. She smiles crookedly and gives me thumbs up. I show her drawings I’ve made of the interior I’ve planned for the trailer, and she smiles again, because she is an environmentalist who feels good when old things are kept and restored, reused instead of cast away as garbage. I tell her about the guy I met at the dog park, who, when I mentioned I was rebuilding an old trailer as a writing studio, he shouted, “Hey! Wait! YOU’RE that Trailer Dude I heard about?!?” Jackie laughs — a good, robust laugh. I ask her if she’d like a dish of her sugar-free ice cream. She nods, and I serve it to her.
Then I return to my driveway and think about my next steps: for the trailer, for my relationships, for my self — all the building and repairs that need to get done. I pick up a hammer, and get back to work.