Aaron Lazar went through the "worst time" of his life before being diagnosed with ALS
The 47-year-old actor was diagnosed with the fatal motor neuron disease Amyotrophic lateral sclerosis - which is characterized by progressive degeneration of nerve cells in the spinal cord and brain - after experiencing several long bouts of involuntary twitching but admitted that the road to diagnosis was "worse" than dealing with it
9 April 2024
He told People: "That phase to diagnosis was the worst time for me. This is very, very hard now, but that time was terrible. Mentally being afraid and facing my own mortality is some of the most difficult adversity I've ever faced.
"I Googled it and ALS came up pretty quick and I said, 'Are you kidding me?' My aunt Anita - my uncle's wife, so not blood related - she died from ALS when I was in my 20s, so I knew what ALS was from that. And then a year prior to this, my friend, Rebecca Luker had passed away from it. So I was like, 'I got to see a neurologist immediately.
"You can't sleep at night when your whole body's twitching, and that's literally all you can focus on,".
"It started to freak me out. It was scary, and I just let anxiety, insomnia and depression take over. That became that journey of the summer. It wasn't sustainable; I had to figure out what was wrong."
The Broadway star - who is engaged to Nawal Bengholam but has Julian, 14, and Adrian, 12, with ex-wife LeAnn Lazar - had noticed that his left foot was hitting the ground harder than his right and eventually got a third medical opinion who diagnosed him with the condition.
But he refused to be "afraid" of his own mortality and made the conscious decision to spend whatever time he has left being the "best" person he can be to everyone in his life.
He said: "Once the diagnosis came, I made the decision: ''I'm not living whatever life I have left afraid, Because doing it the other way while I was waiting to find out what this was, was just too hard.
"You know, before all this, I've pushed myself really hard to be the best - to be a perfect husband a perfect father, a perfect actor - all these things. I lived with so much fear around that feeling of, 'What if that big job doesn't happen?' 'What if I disappoint so and so?' I know what trauma does to you. This is a disease of the nervous system. If I'm running dis-ease through those wires that connect the brain to the body, then how can I really restore ease to my body?"
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