Richard Westcott - Dancing in the Dark

 

 

When I was 35 years old, I was invited to a party. When I got there, I found that all the carpets had been rolled up, and there was a stereo playing different music in every room. Everybody was swing dancing. Everybody was beautiful, laughing, smiling and having so much fun. The energy was through the roof and I thought I have got to be a part of this. So, I started taking dance lessons. And I loved it. 

 

Through the years, dancing became my identity. I went out dancing three, four, sometimes seven nights a week, swing, rumba, foxtrot, Argentine tango. For me, the highest calling is when you can become one with your partner. Yes, you're dancing with a physical body, but you can become one with the soul of that person. 

 

One Saturday night, I went to a dance hosted by a professional dance couple. I arranged to meet a friend there. And at one point, I asked Miriam, the studio owner, to dance. I knew she was a fabulous dancer. She didn't know me from anybody. [audience laughter] So, we started dancing. And she's dancing like a dance instructor. But soon she encounters the resistance of my lead. 

 

At that moment, she knew this was going to be different, and she trusted me and she allowed herself to feel and express the music. And at one point, I led a spiraling eight count figure and we became one. After the dance, I went back to my friend at the edge of the dance floor and I said, “Okay, that's it. It doesn't get any better than that. It is time for me to go home.” [audience laughter] 

 

Four years ago, in September, I started having issues with my vision. Minor things at first, but soon a pattern emerged where the vision in one or the other eye would deteriorate through the course of the day, becoming worse in the evening. Then the next morning, everything would be fine again. I consulted doctors, but no one could figure out what was wrong with me. 

 

Just four weeks later, I was at my office where I worked as a civil engineer for a large design firm. And I thought, today, I should leave a little early. It was the first game of the ALCS, the Red Sox were playing the Astros. And my commute took me right by Fenway Park. 

 

Now, I had been having issues with my eyes that day, and I thought I should drive, I should call an Uber. But one of the things with the problem with the vision is it also affected my judgment. And a little voice on my shoulder said, “Nah, you'll be fine.” It was dark, it was raining and the traffic was stop and go. 

 

And by this point, my vision had deteriorated to tunnel vision in both eyes. I had a light-colored car in front of me and I used that as my guide. After a harrowing exit office stereo drive and a few other very stressful maneuvers, I was able to find a parking space and I pulled over to wait for my vision to get better. It didn't. So, I walked home. 

 

I went to bed that night fully expecting my vision to be fine the next morning. But it wasn't fine. When I awoke, I couldn't tell what time it was. I knew the date. I knew it was October 14th, but was it day or was it still night? I fumbled around and found my cell phone, but I couldn't do anything with it because I couldn't see its face. I sat on the couch, defeated. I thought I could die right here in this couch. I imagined I would be found next spring, just a pile of dust and bones holding a cell phone in my skeletal lap. [audience laughter] The darkness was profound. 

 

But eventually, through the help of some neighbors, I was able to call the one phone number I knew by heart, my ex-wife. [audience laughter] She called my sister. And with her help, I was able to make my way to Mass Eye and Ear. There, the ophthalmologist did his exam and he said, “I'm going to tell you it the way I would want to hear it if it were me. What you have is giant cell arteritis, referred to as GCA. You are totally blind. This kind of blindness is permanent. There is no cure. There is no chance of recovery.” 

 

I was stunned. At that moment, my earth stopped turning and I was left trapped on the dark side. GCA is an autoimmune disease that comes on for no apparent reason. It clogs off the blood flow to the eyes and the optic nerves. It always attacks the eyes first, but it doesn't stop there. You lose your hearing, you lose your sense of smell, your sense of taste, then it goes after your vital organs until it gets to your heart. 

 

They started me in an IV of steroids to reduce the inflammation in an attempt to stop the progress of the disease. I had a couple of days of not really knowing where I was. I felt trapped inside my own skull, and it was terrifying. I remember thinking, this must be what it feels like to die. 

 

One day, my nurse announced that I had visitors. I was not prepared for the crowd that streamed in. I had my circle of friends from ballroom dancing, another circle from swing dancing, Argentine tango dancers, co-workers, relatives. introductions are being made all around. I was in a fine mood, but nevertheless, I realized that in a very real sense, my life had ended and this was my wake. 

 

Now, these people knew how I used to be. But lying there in that hospital bed clearly, I was different. Most of these people knew me as a dancer. But there would be no more dancing for me. No more taking my children out for boat rides. No more ambling strolls along the waterside. Certainly, no more driving. I was grounded. 

 

Eventually, I was well enough to leave the hospital and fortunately, my sister and her husband took me in, which was good, because my body had to go through a complete rebound. But by Thanksgiving, the progress of the disease was stabilized and I was able to enroll in a program that I fondly refer to as blind college. The hope was that I would be able to learn to live independently and return to work. There, they taught me how to use a cane and many other things. 

 

I discovered I had great difficulty relating to other people while being blind. I had great difficulty entering into conversations because I couldn't see anyone and I couldn't tell when I might speak to somebody without interrupting them. I had my ups and downs along the way, but I did graduate from blind college and was able to live independently and return to work in a new capacity in my field of engineering. 

 

One afternoon in my new apartment, I was organizing the closet, and a rumba came on the radio and I couldn't resist the rhythm. So, I put both my hands on the doorframe to keep my balance, and I moved to the music. Often, I would visualize beautiful dancing doing delicious, sensual figures. I would recall the freedom of movement. I could feel it. But that afternoon, with my hands on the doorframe, I realized I just couldn't do it. 

 

One night, some friends walked me down Circuit Ave to the Ritz. Johnny Hoy and the Bluefish were playing, and I thought maybe, maybe, maybe this is what it would take. A friend asked me to get up and dance, but I was very stiff and I kept stumbling backwards. I was all body and no soul. And I thought, OMG, it's true. I'll never dance again. 

 

In so many measurable ways, my life had ended. Dealing with the loss of vision was difficult, but not being able to dance felt like being wrapped in heavy, rusty chains. I kept holding onto this fantasy that my vision would come back one day if I just willed it hard enough. Because of the nature of the disease, early on, I would have occasional flashes of actual vision that would last for a second or so. 

 

My vision was flirting with me, and it left me with the almost cruel belief that my vision was going to come back one day, not because any doctor even hinted at that, but because I could not accept what had happened. This past summer, I was on the vineyard with some friends, and we went out to eat at a restaurant and I heard someone say, “There's Johnny Hoy.” They're coming in and setting up their equipment. 

 

The music began to play, and my best friend's wife, Bronwyn, who is an excellent dancer, grabs my hand and says, “Come on.” If it had been anybody else, I might have said no. I knew the space was small, and I was sure I would lose my balance and stumble backwards. But it was Bronwyn. When we got on the floor, I instantly knew this was going to be different. I trusted her, and I found that I could feel and express the music. I never thought I would feel that way again. And we kept dancing. 

 

And at one point, the song ended, and Bronwyn looped her arm through mine and repositioned us a bit on the floor and I heard someone say, “Oh, my God, he's blind”. People had no idea. If you had asked me just the day before, “Would you ever dance again?” I would have said no. But that evening, dancing with Bronwyn, I realized the music of my soul had been set free. My rusty chains had fallen off. 

 

I still wish nearly every moment of every day that I had my vision back, but I'm adjusting. Whether I'm having wonderful daydreams or terribly depressing thoughts, I just enjoy a wallow in them. And then, at some point, I say, “Okay, that's enough. Time to get back to what you were doing.” And sometimes, [sobs] sometimes I just dance.