#ALS

I am 42 years old and I am dying.

I was diagnosed in July with ALS. Amyotrophic lateral sclerosis—words I can’t keep in my head. Fortunately, most people know it as ALS or Lou Gehrig's disease. The doctor who finally diagnosed me called it motor neuron disease.

When people find out that I have ALS, they talk about Stephen Hawking. He lived for so long! (I am unlikely to be the next Stephen Hawking. The typical life expectancy is two to five years.)

They say, “How are you feeling? You look great!” All together, without space for an answer in between.

I first knew something was wrong over two years ago, the summer we moved into this house. I was walking across the street and a car came up over the hill too fast, racing toward me. I started jogging to get out of the way, but my muscles jerked like I was held up by marionette strings.

I used to run half-marathons.

I go to doctors: sports medicine, hip specialist, back specialist, physical therapist. I get tests: four MRIs that cost thousands of dollars each, blood draws that make Troy blanch (“it looked like they were taking all of your blood”). The specialists look at me and frown. On paper, I am healthy, but it’s obvious when they watch me walk that something is Not Right.

It gets harder to write and then to type.

I have a panic attack during an EMG, a nerve test using electrodes and needles. I sob on the paper sheet, saying I need to stop. Later, I say that I think I could handle the test if I could have Troy in the room with me. The office says that is against their policy and my neurologist drops me for months.

Troy and I start asking for tests from my primary care doctor, trying to rule out other possibilities. We are both afraid that it is ALS.

Finally I see a doctor who knows what this is. He looks at my brain scan and says that it’s normal . . . except that I have the brain of a woman ten years older. (I don’t think he means this as a compliment, but I take it as one.)

He schedules another EMG and I ask for Troy to be in the room. The office says yes without batting an eye. After the test, the doctor confirms what we already know.

Over the next few days, we have a series of agonizing phone calls with loved ones. We cry with friends and family. As unbearable as these conversations are, they involve many of the same questions. Troy writes a document to share so that we don’t have to repeat ourselves as often.

We call it “the trapdoor.” Some small thing will set us off and suddenly one or both of us are sobbing in the kitchen. We wonder if there will ever be a day when we don’t cry. Eventually, that day comes.

The focus becomes getting me to the best possible treatment: a world-renowned clinic an hour away. Friends from all over the country call in favors and send letters on my behalf. It works. I get a call within a few weeks that I am in, with my first series of appointments at the end of July.

In the middle of all of this, we plan our wedding. It is small and beautiful. Friends and family travel from all over the world to gather for a joyful occasion. They learn about Quaker weddings and sign our marriage certificate. Our house is full of laughter and good food.

The medical team at the ALS clinic is kind and excellent. I start taking medication six times a day, including a powder mixed in water that costs $12,000 a month (somehow I do not have to pay this). The components are synthesized bear bile and very expensive salt, and it tastes like the worst Gatorade you’ve ever had.

I am getting worse. I go from using a cane to a walker, and I walk very slowly. My days get shorter as I start sleeping for ten or more hours.

I work, I pray, and I wonder if I’m doing enough.

And there is so much love. Friends send letters, postcards, and pictures of their pets and interesting birds. Our community gives us gift cards for local restaurants and offers us rides. I reconnect with people I haven't seen in decades.

It is so hard and so beautiful, all at the same time.