It takes a lot for Rebecca Luker to sing these days.
After receiving a diagnosis of amyotrophic lateral sclerosis, or Lou Gehrig’s disease, last fall, the three-time Tony Award nominee has to use her elbows to prop herself up on the arms of her wheelchair to produce the soaring strains that fans of “Secret Garden” and “Phantom of the Opera” have come to know and love, albeit in a lower register — high notes are hard for her.
Though Luker’s prognosis appears bleak — A.L.S. has no cure and is usually fatal within a few years — she plans to continue to sing as long as she’s physically able, including at a prerecorded Zoom benefit performance, “At Home With Rebecca Luker,” on Wednesday at 8 p.m.
Santino Fontana, the Tony-winning star of “Tootsie,” is hosting the benefit, which features Luker, 59, singing three songs and conversing with the journalist Katie Couric. All proceeds will go toward the development of prosetin, a promising experimental drug that rescues motor neurons in A.L.S. patients.
Luker’s Tony nominations came in playing some of the sweetest soprano roles in the musical theater canon: Marian the librarian in “The Music Man,” Magnolia in “Show Boat,” and Mrs. Banks in “Mary Poppins.” Her last Broadway appearance was as Helen in “Fun Home” in 2016.
On Saturday morning, she spoke candidly about the progression of the disease, why she finds it hard to watch recordings of Broadway shows right now and the vulnerability that comes with sharing a voice affected by A.L.S. (though her husband, Danny Burstein, a six-time Tony nominee, says she still sounds marvelous). These are edited excerpts from the conversation.
What did you know about A.L.S. before?
A high school friend, a young male athlete, had died of it. I knew only scary things, because I saw him right before he died, and it was bad. His progressed very quickly. Then I started talking to my doctors and reading more about other people who had it, and it affects everyone differently. You can arrest the disease, or even reverse it, which I’m aiming to do. But right now I am progressing.
What’s your prognosis?
I’ve been told I have a slowly progressing type of A.L.S., which is giving me hope. But beyond that, I really don’t know. Some people live two years, five years, decades — some even plateau and live many, many years, like Stephen Hawking.
What’s the most debilitating symptom you’re dealing with?
My legs don’t work. Not being able to walk is traumatic and awful. And my arms and hands are getting weaker, which is disturbing because without your legs, you really need your arms. I’m just hoping it doesn’t get worse.
Has A.L.S. impacted your ability to sing?
Yes. I have to hold myself up on the arms of my wheelchair to get a full breath of air, and even when I do that, I don’t have much of a diaphragm anymore, so there’s not a lot of support. It’s not easy. I’m not quite sure how I’m doing it. But I’m trying to keep it up, because it helps.
In what way?
Well, physically, it helps my lungs. But more than that, when I sing, I think it heals me. It helps me feel like I’m still a part of something, like I’m doing something that’s worthwhile and not just languishing in a wheelchair.
It takes a certain vulnerability for a performer to put themselves out there knowing that their voice isn’t what it once was. Why is doing Wednesday’s event so important to you?
I wanted to do it, certainly not for my ego, but to raise money for this new drug. But singing those three songs was difficult — I watched myself singing one of them on a playback, and it was tough because, you know, I’m in a wheelchair — it’s right there.
Are you worried at all about what people will think?
I’m not even thinking about that. I hope it moves people to donate and gives them a better idea of what A.L.S. is and how much we need to eradicate it.
Would there ever be a point when you’re still physically able to sing, but you wouldn’t want to because you’d be worried that the quality wouldn’t be up to your standards?
I don’t sound like I used to, and that will be pretty apparent to people. High singing is hard because I have no support. But I sound OK. My husband says I sound beautiful. I’m proud that I can still sing.
What’s giving you hope right now?
Some days I don’t have hope. The days that I do, I think about all the people that love and support me. There are a lot of exciting medical things coming down the pike in 2020. I know that I’m a strong person and that I can beat this.
Has your diagnosis been more challenging for you mentally or physically?
Mentally, because I have all these fears that crop up. And that’s saying a lot, because the physical toll is huge.
What has this disease taught you about yourself?
I’m ashamed of how I let myself get so depressed and angry sometimes. But I’ve also learned that I can be very strong mentally. And I’ve learned to somehow keep myself from going crazy, which is easy to do when you’re stuck in a wheelchair.
How have you been filling your time?
I started watching “Ozark” on Netflix — and I’m obsessed — but I haven’t been watching anything of a musical or Broadway ilk. I don’t know why I’m staying away from it — maybe it reminds me of what I used to be able to do and can’t now.
How has living with A.L.S. changed your outlook on life?
I want to tell everyone how lucky they are. I tell my friends that they can talk to me about their problems, but just to always be aware that if you can walk down the street and you’re healthy, you have everything. I’m never going to complain again.
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