Kids

How do I tell them? How do I not?

The doctor at Columbia neurology confirmed it, ALS. It took eight months six neurologists and more than a hundred sleepless nights to be properly diagnosed. I had been diagnosed with BFCS – benign fasciculation cramp syndrome - up to that point. This isn’t really the doctors’ fault. You cannot diagnose amyotrophic lateral sclerosis with one symptom, and up to that point I had only had muscle twitches. It wasn’t until the muscle weakness started to show about six months in that the doctors could officially change their mind.

I was sitting in the exam room with my father when we got the news. I cried. He cried. I asked everyone to leave the room and I cried some more. In the days following, I told my immediate family and a few close friends. And I told the director and my costar of a production I was in rehearsals for. But I did not tell my children. And I would not tell them for another 18 months.

This was for a few reasons: one I didn’t want them to be afraid. Two I was still in shock. Three I truly believed, and still believe, that I was going to beat it. I was 45 years old and in the best shape of my life since I was an athlete in college. Now I was facing unanswerable questions like – how much longer am I gonna be around? What quality of life am I gonna have? How do I tell my kids? How do I not?

For the next year and a half I embarked on the first phase of what would become a healing journey, an awakening, and the most transformative time of my life. Over and over I agonized when to tell my kids, but kept putting it off, knowing that this was not an intellectual decision, but rather a deeply spiritual one I wanted to be guided to make. I resisted the mental chatter and temptation to tell them instead trusting that when it was time, I would know. And so if I thought it was time, but wasn’t sure, that meant it wasn’t.

My physical body was still very functional. My kids saw me starting to have problems with my legs, and about a year in I started wearing AFO leg braces to help me walk. I told them I had a problem with my nerves and left it at that.

I’m glad I did it this way. We did it this way, my family and I. I was living with a girlfriend at the time who was very supportive of my mission to heal and at that time,a very positive person. Between the two of us and all the work I was doing Reading, meditating, eating well, and attending events to help me learn how to change my thoughts/how to control my Mind, we were a great example for the kids. And the kids, my two sons who were nine and eleven at the time, were and still are bright lights of support and love.

As things got more challenging, and I started having trouble walking without walking sticks or a walker, I felt the time was coming to share the diagnosis with my boys.

It was the summer of 2023, more than two years after the first symptoms started. I was doing a series of concerts in New York. My dear friend Tony award nominee Kate Baldwin and I had taken our chemistry and decades long friendship to the stage in a critically acclaimed cabaret. We were performing together in the city’s elite club 54 Below.

We had been performing this show to great success and this particular night I wanted to switch it up. I asked Luke Frazier, our conductor and conductor of the orchestra the American Pops, if there was another song we could add to the set for me. He asked if I knew the IMPOSSIBLE DREAM.

I hadn’t performed the song for 23 years since I was a graduate student in Cincinnati. I said sure why not! The rest, as they say, is history. The song has become the anthem of my life, and the umbrella under which I have created an album, a podcast (coming soon), and this newsletter. I’ll write more about this in another post. For now it’s sufficient to say that with the IMPOSSIBLE DREAM guiding me to reach the unreachable star of healing from ALS, I had started to become interested in sharing my story with others. Of course I couldn’t do that until I shared it first with my kids.

At the end of that summer, we were all headed on a huge family vacation to Jackson Hole, Wyoming to celebrate my parents 50th anniversary. My girlfriend and I figured that might be a good time to tell the kids since they would be surrounded by a lot of love and outdoor distraction. So we sat them down and I said,

“Guys I just want to tell you the doctors know what’s been going on with me. It’s called ALS.”

After a brief silence my older son Julian asked, “Are you gonna die?”

I said yes. We all die someday… a half- hearted attempt at making a joke.

My younger son Adrian asked, “Are you gonna die anytime soon?” I said no.

And the boys said, “Cool. You got this dad.”And they ran out to play.

All that agonizing and uncertainty, balanced with all my faith and trust that the right time would come, created an experience of sharing terrible news not so terrible. It was beautiful actually. And a huge relief.

I had learned a big lesson, one that I still remind myself of frequently. I used to be a drama queen. Typical actor. I used to want to get everything off my chest with others looking to others for hope or love or validation. I didn’t have a lot of patience and was pretty reactive. These 18 months of resisting my impulsive nature, were not just about me trying to be a good dad, they were lived experience ofme making a choice to do things differently. Every day. No matter how hard it was somedays. I knew to change my destiny, I needed to change myself and that meant changing old ways of doing and being.