Friends and Neighbors

At one of my first ALS support group meetings, our host, Carl, said, “When you have ALS, your address book changes. You learn who your true friends are.” That has not been my experience. All of my friends have remained steadfast. They visit often, although Covid, off and on, has disrupted my willingness to have visitors. They stay in touch by email, and the local ones eagerly volunteer to help when I put out a call. Moreover, my friends treat me exactly the same as they did before I lost my ability to speak and move. I am very lucky. 

I have been lucky in other ways. One of the first things I did after I got my ALS diagnosis, was start looking for a new house. We were living in a three-story townhouse, and I knew it was a race against time before I could no longer climb stairs. I wanted to buy a single-story house with four bedrooms and two bathrooms, within walking distance to the boys’ schools. It was a very tall order.

After looking for nine months, I found the ideal house. While I still had the option to back out, my realtor, Tara Farquhar, advised me to meet the neighbors on either side, “in case they turn[ed] out to be crazy.” 

On an evening in late July, I ventured to my future neighborhood. After meeting Sandra and Jeff to the south, and Chiara and Nate to the north, I felt like I had won the neighbor jackpot. Not only did they welcome me enthusiastically, each couple also invited the boys and me to the upcoming annual neighborhood night out. I said a silent thank you to Tara for urging me to introduce myself to the neighbors.

Shortly after we moved in, I wrote to Sandra, Jeff, Nate and Chiara about my ALS. They responded with warmth and offers of help. After I stopped working, I needed help making phone calls and filling out forms. Sandra, who was retired, often came over to help me with those tasks. Having worked in the insurance industry for many years, she was especially helpful when we called my auto insurance company about my policy. She was (and still is) my go-to person for all kinds of assistance. I distinctly remember texting Sandra when I couldn’t unscrew the cap on the soy milk container, back when I was still eating, but my hands were very weak. She came right over.

Sandra’s husband, Jeff, has been my unofficial electrician. He replaced a lighting fixture for me, down to the wiring. When the power went out in my bathroom, Jeff diagnosed the problem and replaced the faulty outlet. In addition to his electrical prowess, he used to be a professional bicycle mechanic, and has all the necessary equipment. Last spring he gave the boys’ bikes full tune ups. 

After I told my neighbors about my ALS, Sandra shared the news with Julia and Joe, who live across the street from her. Julia, whom I hadn’t met yet, also wanted to help me. Before long, Julia became one of my volunteer caregivers. She got me out of bed on Thursday and Saturday afternoons, took me to the bathroom, and gave me my formula through my feeding tube, all while we had a wonderful visit together. This went on for many months, with Sandra joining in when transferring me became more challenging.

Joe, Julia’s husband, has offered to read to me. I have not taken him up on it yet, because of time. I have taken him up on his annual art sale. Joe is an avid photographer and painter. Each December, he has a show of his work, and asks the buyers to donate the money to a hunger relief organization instead of paying him. Since their house is not accessible to me in my power chair, Joe and Julia brought the art to me for a private showing.

When we had a powerful windstorm a couple of years ago, a section of my fence blew over. Chiara and Nate noticed, and propped it up so well that it has withstood subsequent windstorms. On another occasion, I heard what sounded like someone on the roof. When I looked out the living room window, I saw Nate climbing down a ladder from my roof, holding his leaf blower. He told me that he was cleaning my roof and gutters before the rains came. 

Whenever I think of my great good fortune with friends and neighbors, I recall the parable of the man in the flood. There are many versions of the parable. I will quote the one from the “Take this Sabbath Day” episode of The West Wing, since it’s where I first heard the parable. In this scene, Father Thomas Kavanagh speaks to President Bartlett:

You remind me of the man that lived by the river. He heard a radio report that the river was going to rush up and flood the town, and that all the residents should evacuate their homes. But the man said, “I’m religious. I pray. God loves me. God will save me.” The waters rose up. A guy in a rowboat came along and he shouted, “Hey, hey you, you in there. The town is flooding. Let me take you to safety.” But the man shouted back, “I’m religious. I pray. God loves me. God will save me.” A helicopter was hovering overhead and a guy with a megaphone shouted, “Hey you, you down there. The town is flooding. Let me drop this ladder and I’ll take you to safety.” But the man shouted back that he was religious, that he prayed, that God loved him and that God will take him to safety. Well… the man drowned. And standing at the gates of St. Peter he demanded an audience with God. “Lord,” he said, “I’m a religious man, I pray, I thought you loved me. Why did this happen?” God said, “I sent you a radio report, a helicopter and a guy in a rowboat. What the hell are you doing here?”

ALS is the most tragic thing that has happened to me, but I don’t ask God why it happened. Instead, I thank God every day for sending me the many, many people who have made having ALS easier, including Sandra and Jeff, Julia and Joe, and Chiara and Nate.