The nomination of the six-time Tony Award and ‘Moulin Rouge! The Musical’s star reflects on his life after six days in hospital, including caring for his wife, fellow stage performer Rebecca Luker, in her battle with ALS.
In April, The Hollywood Reporter published an essay I wrote about my six-day experience in the St. Luke’s Hospital of New York, now Mount Sinai, while I was on COVID-19, was having difficulty breathing and a temperature that at one point reached 104. It had been a pretty traumatic experience for me, and I found writing in it therapeutic. Four months later – and here’s the honest truth – I’m not really sure how I do it. While my symptoms are for the most part widespread, they also persist in subtle and, on some days, not-so-subtle ways. I can suffer terrible exhaustion. I have swollen hands and feet. I had a few weeks where I had short term memory loss; that went away immediately. I read websites for survivors and hear from other people who have experienced this disease in similar ways as well. Unfortunately, it seems that everyone who suffers from COVID-19 also has some kind of residual symptoms.
Worst of all, several loving friends died, closing me in, while also making me feel incredibly grateful that I was alive. My roommate from the hospital, Jose, begged to inform me that he was feeling better, but told me that his sister had died from the virus. In the news, there are daily reminders of my hospital stay, and it hurts to hear about the increasing number of deaths and positive tests.
Upon my release from the hospital, my wife, Becca, and I were worried about our 24-year-old son, Zach, catching the virus. In fact, he never did. I was recovered and Becca had just started her own bout with the virus. Zach found a room to crash 20 blocks downtown in a few weeks and later found a studio in Brooklyn.
But that meant I would be responsible for taking care of my wife, who also struggles with ALS. No health care worker in her right mind would come to our house because we both suffered from the coronavirus infection. We were very much on our own. The next month was spent pretty much alone in isolation. Even though I was dizzy and in a constant state of exhaustion, I was able to care for her in some way.
I walked around midnight every other night to buy food when the store was pretty empty. Becca has suffered because of my terrible cooking. She sweetly never said anything bad about the experimental slop I threw at her food for her. Fortunately, her bout lasted only about a week. She had three days of a mild fever and lost her sense of taste and smell, often symptoms of the disease, but was otherwise OK. She needed a happy break. I prayed to God, despite being a devout atheist, that she would be spared this trial and that she was, fortunately.
After the shutdown of March 12, my guy Moulin Rouge castmembers and I were desperately clinging to our mass text thread for some connection. Unfortunately, we seem to let it go for the most part. In the beginning, there were texts every day. Now we are lucky if someone posts a text once a month. Our close-knit family has splintered to various parts of the country. New York is far too expensive just to sit in one’s apartment and hope the phone rings with news of a new opening date than a different perspective. Since this is the only house I know of – I grew up in the city – I’ve been here for a long time.
Well, it’s normal for cast to go their separate ways once a show closes, but technically our show is still here. Our marquee is still up, as are all the quotes and images. Will we ever be able to come back together and fall back into that beautiful groove we found? Can a show the size of us return and survive such a financial blow? The producers assure us that we will. I’m jealous of it.
But in the meantime, I have to find some work to survive this theatrical downtime. I always had faith that something would come, and by some miracle it always did. But my faith has been a bit off lately. Our business has yet to really return to any kind of normality or even semi-normality. I can earn some money from home speech work, and I hear that TV and movie work in New York City is slowly starting to return. My fear is that theater may not return until 2021, when hopefully scientists will have discovered a vaccine. If not, it seems unlikely to me that it will come back. It’s heartbreaking for so many in our company who should have packed New York City and have no plans to return.
Meanwhile, we are stuck in this bizarre limbo as people fight over the question of whether they should wear a mask and social distance. I keep thinking that if the people who believe this is all a hoax but can only experience one hour in a COVID department, their thoughts would change immediately. I was coughing up blood in my ER isolation room and still did not want to believe that my life was in danger. But when my nurse came to break the news that I had tested positive for coronavirus and then immediately followed up with, “By the way, are you an organ donor?” I sobbed pretty fast.
On April 22, about five weeks after I was released from the hospital, I thought I had a heart attack. I felt pain in my chest and a pain in my jaw and left shoulder traveled down to my arm. That I marched myself again to St. Luke’s ER – this time only. I called my best friend, George Dvorsky, to run to my apartment to take care of Becca while I was in the hospital. I was not sure if I would be allowed or if I would be there for a short while.
One of the potential side effects of coronavirus (and also hydroxychloroquine, which I received for five days) is stress for, and swelling of the heart. After five hours of testing, they found nothing unusual, but said I was very smart to get in, seeing my recent history. All my figures, ECG and X-rays were completely normal. It was a mystery. But I know what I was feeling. Thankfully, it disappeared by the time I was released that evening.
To this day, we are not entirely sure what it was – adapting my body to a near-death experience is a possibility. Those are countless other scenarios. While I was waiting for my results to return that night, the ER doctor showed me my chest x-ray of five weeks before. He said the old x-ray was “just awful.” He kept saying that I was “very, very sick.”
In a normal x-ray, healthy lungs should look black. Mine was mostly white and cloudy, covered with the infection, except for a thin strip of black round in the center of each lung. Five weeks later, they were better, but not 100 percent. It took me over two months before I could walk two or three blocks without feeling windy. I was afraid my lungs might not come back. I feel like it’s a bit of a miracle they have.
I want to tell you about the nurse who gave me the ECG the second time I went to the ER. She was a lovely Dominican woman in her 30s. She was friendly, professional and just fantastic at her job. She asked why I was there. I told her I had chest pains and that I had been there just a month earlier in the COVID unit. I told her that she and everyone in the building had saved my life.
She looked up from what she was doing and said, “You survived?” I said, “Yes, thank you,” and with that she laid her hands together and slowly bent down before me as if praying. I said, “Wait, no! I should bow to you!” Then her expression suddenly went blank, she fell silent and methodically began to attach the ECG electrodes to my chest and arms. About 20 seconds of silence passed before she said, “I lost five members of my family. Uncles, an aunt and two nieces. My mother can not stop crying. I was so busy that yesterday it was finally possible to cry . “
I tried to say something comforting, but could not find the right words. I just told her how sorry I was. She thanks me for telling her I made it. That I had survived. She said that all she heard in the hospital were the horror stories. She said she was so happy to meet and hear me that I had survived. It gave her strength, she said.
By the time she was ready, we had talked about our families and even shared several heartfelt laughs. She told me to go back to the waiting room and I never saw her again. It was one of those encounters with another human being, where you just connect on a very deep level and touch a lot, but know that you will probably never see each other again. Deep and cheerful. Nice and hard.
And now I’ll tell you the hardest news: Becca’s ALS has grown rapidly. After being diagnosed in November last year, she announced her fight with the disease on February 9th. At the end of that month, she could no longer walk.
She can not brush her hair today. That’s new. She needs two hands to drink her morning medicine. I had to feed her the last half of her meal last night. Most days she does not let me feed and would rather eat less than let me help. I spend my days helping, they spend their days fighting.
We argue with insurance companies, wrestling with an indifferent health care system. We argue with each other knowing that it is because of our impossible situation. We all know we’re dying, but we do not have to worry about it every day.
It’s a struggle to lift them. It’s a struggle to get her in her chair. The headstone broke on her new wheelchair, so that will take six days to get the new part and I improvise so she can get her head back. She has not run in almost six months.
Will she ever run again? Her shoulders shrugged, apparently last night. And now her hands. Their shape has changed, especially the left one. But the right one starts curling up in the same unusual way. When I put on her bra and shirt, I have to raise her changing hands and hold back the tears. They are not the hands I have had all these years. It’s not the hands I kiss when we make love. I try to stretch them back into a familiar position and she says it feels good, but they fall back into their new shape. We have to mourn something different every few days that she did so easily. And yet we have hope.
She is strong, but seeks answers when she sees that her body is failing her. And yet she has hope. I do not know how I feel. I have always been the more pragmatic. She has always been so sure. I can not deny her hope. I have something too. But I have to stay prepared at least. And I hate that I prepared myself at least. But we hope our hope comes true.
The other day, my friend, the brilliant songwriter Tom Kitt, called me. He said he was frustrated by his lack of creativity due to the pandemic and was exhibiting to several friends to see if we could write songs together. He said, “Is there anything happening in your life right now that you just have to express?” And I sat down at my computer and wrote the following: “The question we keep asking is how do you have hope when every moment is a struggle? When every second is a memory.”
A version of this story first appeared in the August 5 issue of The Hollywood Reporter magazine. Click here to subscribe.
