Lights and Sirens: An ALS Journey

Lights and Sirens: An ALS Journey
I ask the driver, Please, no lights and sirens. She says they have to, it’s protocol when transporting someone on a ventilator.
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Back to the hospital again.  I load up my glasses, contact things, books, snacks, and sweats to sleep in, because it gets cold there at night, when they kick on the air conditioning in the intensive care ward to keep the fevers down and the nurses awake. I put it all in an assortment of baskets and bags that I carry with me in the front of the ambulance. It reminds me of the luggage I saw people carry on the bus in Crete. I joke about my Greek luggage but nobody understands.

I ask the driver, Please, no lights and sirens. She says they have to, it’s protocol when transporting someone on a ventilator. The crowd has already gathered to watch the Rasta with the tube in his throat get loaded on the ambulance. Two fire trucks and an ambulance tends to attract attention. I sigh and put my feet up on the dashboard.  They turn on the lights and sirens.

When we get to the hospital, we are greeted by name. Here come the frequent flyers, they say. We joke about needing a weekend away. Nobody laughs. It was here or the coast, I say. And the food’s better here. Finally,a smile. You guys need to get a life, the night nurse says. Yes, we do, I say. A long one.

I help myself to the TV/VCR in the hallway, the one with the videos from our neighborhood video store. It reminds me of that other life, not so long ago, when we would stroll down the street after my son went to bed and rent a movie to watch together. Back when Lem could walk. Before his motor neurons began to die off, wasting his muscles and leaving him breathless.
I remember the evening Lem couldn’t make it to the video store, two blocks away. I left him sitting on the roots of a redwood tree. When I got back, he hadn’t moved. Six months earlier he could pick me up and twirl me like a baton. Now he couldn’t put his shirt on without help.

I ask the nurses for a chair that pulls out into a cot. They say there isn’t one available. Please find one, I say. Please. I don’t want to sleep in a chair. Someone locates an unused one in pediatrics and brings it to me. I want to cry with joy. Those are so comfortable, I tell the nurse. No they’re not, he says, looking at me strangely. But in the care facility where my husband is lodged until the house is ready for him, my son and I alternate between a recliner and the floor. One hurts my back and the other, my legs.
The septic infection in Lem’s bloodstream is kept at bay by IV antibiotics. But his red blood cells have disappeared. He is sleeping. The doctor tells me he needs a transfusion. He won’t like that, I tell her. You know how people from the Caribbean feel about blood. But he needs it, and I give my consent. I ask her to tell him it was my blood. Oddly, when he wakes and I tell him about the transfusion, he doesn’t seem to care.

Lem sleeps a lot now. I watch the sunset on the closed circuit TV. Four channels of the top of the hospital. Overkill, but nice at sunset. We used to sit outside and watch the sunset together. In that other life, not so long ago. When he wakes, we watch movies, eat Chinese food. I get us sodas from the nurse’s station. He gives the nurses a hard time. His favorite ones give it right back. A few of them are in interracial relationships. They form a little society around us. They are the ones who don’t act afraid of him.

At night, I roam the halls. I joke with the nurses. I find family members shivering in the waiting room while the staff works to save their loved ones, and I bring them hot blankets. I’ve spent so much time here, I know where the blanket warmer is. A year earlier, when we first came to the ICU, I was going into shock, shaking like a leaf. The nurses wrapped me in a hot blanket, and I sat in a chair all night and watched them stop him from dying right then by putting a tube down his throat. His lungs had failed him, but back then, he could still walk. Still use his hands. Still hope.

That first time in the ICU, I was exhausted from trying to stay awake for weeks before that, watching Lem breathe. He couldn’t sleep, or when he did, he’d have nightmares. All signs of respiratory failure, but we knew nothing of that. He was losing weight, losing muscle. He was tired of blood tests. He lay on the bed in our room. I had to help him to the bathroom, two steps from our bedroom door. I couldn’t leave him alone, for fear that he would choke.
I had planted cosmos and sunflowers outside the bedroom window that summer, something I’d wanted to do for years. Every day they got a little taller. They had almost reached the window when we went into the hospital. I wanted Lem to see them, but by the time they got tall enough, we were at the hospital. We spent the end of summer there. By the time he came home, many months later, I had moved us to another house, one that could accommodate his hospital bed and machines. He never saw the flowers. I’m sure I did see them, but I really don’t remember.

It took five days to get a diagnosis. It was not what we had hoped. Because after ALS come the words, always fatal. Always. Fatal. A priest was sent in to tell us that our health plan wouldn’t pay for the ventilator, and we had to pull the plug. And this in a Catholic hospital that won’t perform abortions, or even give the morning-after pill to a rape victim. But if you’re a dreadlocked Rasta from a foreign country, they’ll gladly put you out of your misery.
But it was a lie. Our friend, who worked for a medical attorney, told us that. They can’t kill someone who doesn’t want to die. We banned that priest from the room and began our new reality. Machines that breathed and beeped. Medications and feeding tubes. Nurses and caregivers. Total lack of privacy. And never, ever, sleeping all night.

A year later, we are old hands. Going to the hospital feels like a vacation. When we get home, I can hardly leave the house, to go into the yard or anywhere. He doesn’t let the caregivers suction his lungs. I stay within earshot of the beepers that tell me he isn’t getting enough oxygen. I send the tube down into his lungs to clear the blockage. He tells me I’m the only one who doesn’t hurt him when I do that.
The hospital is a block from the university. Across the street are restaurants, a bookstore, Starbucks. I steal away while he sleeps and buy books and drawing materials. I make coffee runs for the nurses. I try to remember to eat. Once in a while, I walk the block to campus and sit under a hundred year old oak tree. I remember what it’s like to be a person who sits under trees.

He gets better this time, the sepsis under control, the blood disorder diagnosed. We go home. I give him a puppy for his birthday. Caregivers and respiratory therapists come and go. I use my room for storage and sleep on the couch, across the room from Lem’s hospital bed. Because the caregivers need access all night, I can’t sleep with him.

We carve out some time alone: four hours in the evening, all night Saturdays. On those nights I set up an army cot next to his bed. If I lower his bed and pile up every pillow in the house, I can sleep beside him. We haven’t been able to sleep beside each other since he first went in the hospital. We had been married less than a year when he got sick. We need to be close.

On beautiful summer evenings, I move his bed so he can see the sunset outside the window. I have to move everything little by little: ventilator, feeding tubes, bed. But I want him to see it. Perhaps more than he wants to see it. I need him to see it with me.

 These days, I’m exhausted. When caregivers don’t show up, I do it all. I haven’t slept in my bed in over a year. One day, sitting outside the back door in the sun for a few minutes, one word slips through a chink in the armor I have built up in my mind: Freedom. Freedom from what? Freedom for whom? I don’t complete the thought.

The second summer of his illness passes. The black hole of Oregon winter looms in front of us. Lem begins to get very agitated. I beg him to take anti-anxiety meds. He asks for strange things to eat: Spam, sardines and a waffle mixed together. I gag while I prepare it. Then he begins to lose the ability to speak. His speech comes and goes. Soon he will be completely imprisoned within himself. He used to be a singer. Soon he will not be able to communicate simple needs, except by blinking.

One night he is lucid. We stay up late, heads together, talking, laughing. The puppy lies on his bead. When he gets tired he asks me to put on a recording of Nyabinghi drumming and chanting. He asks for some water, then drifts off to sleep.
In the morning, he sleeps later than usual. His eyes are half open. I try to wake him and can’t. The doctor says to get him to the hospital. We call for an ambulance. Please, I say on the phone, please tell them: no lights and sirens. Minutes later, I hear them coming, sirens screaming. A small crowd of neighbors gathers outside. I ride in the ambulance, and the caregiver follows with my car.

At the hospital, they tell me all Lem’s organs are failing. They say it’s time to take him off the ventilator. A week earlier, he’d rescinded his DNR. I say no, he doesn’t want to be taken off. But he will die either way, the doctor says, and it will be more comfortable this way. I don’t want to make this decision. I give my consent.

I hear nurses crying in the hallway. I talk to him, sing to him. I massage his legs, the only thing that has helped his pain recently. Some of our caregivers are there, but I’m hardly aware of them. The world has reduced itself to this small space, this moment. When we are ready, someone shuts off the ventilator. I see his lips move, as if he is saying my name.

When I go out to the car, the drought is ending. Six months without rain, and tonight it is raining. We are crying. I tell my son, the sky is crying for Lem.

That night, my son and I sleep in the living room. He sleeps, but I lie there on the couch, in between sleep and wakefulness. Suddenly I feel Lem’s presence. I feel joy, his joy, at being free of his body. He lies down beside me, just like he used to, in that other reality, not so long ago.

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