It’s true, in an instant, your life can change; an accident, a ruptured aneurysm, blunt trauma to the head, a cancer diagnosis. With Lia, it’s been slow, temperamental and undiagnosed. Her blasé attitude makes one wonder if she’s just used to her body’s deception. She isn’t, she just knows where her energy is best channeled—through music and laughter.
World-renowned soprano’s Anna Nshanian, Luisa Tetrazzini, Montserrat Caballé, Maria Callas, now here comes Lia. This young diva is travelling, performing and sharing laughter along the way; the next two stages will light up Asia and Europe.
Talented actor, musician and good friend of ABILITY, Max Gail, turns the mic to become the interviewer and witness to Lia’s infectious spirit.
Max Gail: So what’s goin’ on with you?
Lia: Plenty. Music—I have a few dates set up for performances, and in the meantime I’m working on new pieces and potential recordings, mostly classical pieces and arias.
Max: When did you know that you had the facility, appetite and the calling to sing that kind of music?
Lia: My father did a lot of theater and singing, and he’s still quite the entertainer. My mom is a classical pianist, turned nursing professor, and now I’ve trapped her back into playing so she could accompany me, which is wonderful. And my grandmother was a theater and stage performer, grandfather writes poetry. A lot of it runs through my veins.
Max: Wow!
Lia: I was on stage quite a bit in my younger years, whether I was singing or theater. A lot of poetry writing. This classical chapter of my singing, began a few years ago, after I—I was on a hiatus from being happy. Then, I met Arman Nshanian, without whom my voice would have no armor. And his grandmother, my maestro, soprano Anna Nshanian, she is my portal to all things classical. I have been, and as long as I can, will be singing.
When I’m singing, I don’t recognize what my mouth is producing, it’s euphoric.
Max: So it’s just part of life for you, all of those things that were around you. That’s wonderful.
Lia: I absolutely love and respect creativity, being able to explore various avenues.
Max: With this mysterious set of challenges you’ve been dealing with, have you found that you’ve had to reroute some things? Is the singing actually helpful with that? I sing kind of like a frog. I sing anyway. My twin sister studied voice for a long time, so I’m kind of in awe of what happens when people really create a song and people go, “Oh, wow!” But I am curious what that interaction is, if any.
Lia: Well, I can’t run around the stage anymore. But, physically, what’s been happening hasn’t held me back from exploring music. I think it’s more of what I’ve personally been allowing myself to be exposed to. I would have had challenges period, just a different set of. I think my perfectionist attitude is more of a challenge than anything physically that comes my way.
Max: Uh-huh.
Lia: The reality is when I’m singing, I can’t focus on anything but. It is unusually freeing.
Max: When I hear people sing in ways that if I try to do it when I’m sure nobody’s listening, I end up kind of hurting myself.
(laughter)
But the sense of it is of connecting with anyone who can hear it. It’s soaring in space, in a way.
Lia: That’s a good word to use. You’re definitely connecting and communicating on another level. And people feel it in different ways. If not audibly, through vibrations. My dear friend and comedic hoot, Kathy Buckley, was explaining to me the feeling of music through vibrations and frequencies. Music has a direct connection to your soul.
Max: It seems to me it’s essential. The birds sing, the whales sing. Humans, when someone makes a sound, whether you’re hearing Ray Charles or Liberace or whatever, it’s like you feel that vibration in your own body. I don’t know another word to use, but when I’m touched my music, it’s a healing.
Lia: There’s a lot of studies around music, healing and being able to communicate in ways you might not have the ability to at that moment but once there’s music, things change.
We’ve been looking at music and memory. There have been studies with Alzheimer’s and dementia patients and the power of music, tapping into emotion and memory.
Max: Isn’t that amazing?
Lia: It is absolutely amazing.
Max: There are people who are totally withdrawn and someone starts singing to them, and they come alive and will remember lyrics to songs when they can’t remember their name. What I know so far, Lia, what I think so far is, there’s more mystery to what’s going on with you than answers.
Lia: Yes
Max: And maybe you could bring me up to speed with that, of what actually it is that you’re dealing with in some kind of way that the medical folks have been able to identify.
Lia: Sure. I’ll go back a few years. Growing up my health was smooth sailing. At about nine and a half years old, I began experiencing weakness in my legs. And unpleasant, excruciating pain in my legs. I started tripping quite a bit. This was around the time when I was in acting classes preparing head shots, going on auditions and starting my career as becoming a young actress. My goal was to be on the Disney Channel. Oh, how I dreamt of being on Disney.
I couldn’t look up at people any more, I would lose my balance. I became really uncomfortable and off-balance as I walked. Leg cramps, twisting my ankles, toes would frequently cramp. I would get a lot of migraines, still do, not as often but painful nonetheless. Over the years, we’ve seen specialist after specialist in countries like Russia, and of course the best of the best here, UCLA, etc. Lots of tests, lots of guesses. It’s very similar to—it mimics a lot of different types of diseases, like Guillain–Barré, Lyme disease, fibromyalgia muscular dystrophy.
Over the years my legs started getting weaker and weaker, leading to significant atrophy. I experienced the death of 10 toes and two feet—they’re there, I just can’t move them. At about 18-ish my hands joined the party. They started atrophying a bit. That was gradual. There was never a consistent progression or typical journey of whatever is going on. The beast of the disease is doing what it wants, when it wants.
It was a blast adding this to my awkward teenage years. You never really get used to it, just deal with whatever comes, as it comes.
I took part in something interesting recently, called trio sequencing. It’s relatively new, maybe just a couple years old. Exome sequencing is a technique that shows a detailed view of an individual’s DNA. What the “trio” means is that they took both mine and each of my parents’ blood to check and see if there are certain mutations that stand out on the genome.
I have less than a month to know the outcome. That would be the latest news in my medical journey. The results will determine what I do next, whether it be a diagnosis or a worthwhile clinical trial.
Max: I would imagine that to have some kind of explanation would be meaningful, even if the next step was back to head-scratching, to have some kind of sense of where it’s—some kind of explanation.
Lia: Perhaps, but I’ve faced my fair share of—doctors haven’t been shy with trying to diagnose me with whatever comes to mind.
Max: Aha! So you’ve had plenty of people come up with their idea of what’s going on?
Lia: I’ve had three or four buckets full of diagnoses. Can’t blame them for trying. I’ve had interesting experiences. One of the first people I saw, when I was about 10, he diagnosed me as having Charcot-Marie-Tooth, which is a pretty common disease with the symptoms that I’ve had. He, prior to questions or tests, looked at me and said I have this. He suggested I learn how to fish, because I would be in a wheelchair within months, and I could go fishing with my grandfather. His hopes and aspirations for what my life would have been didn’t come true. I don’t fish well.
Max: (laughs)
Lia: We tried to find him a few years later and have a pretty conversation. He was off fishing.
(laughter)
So, I’ve had some interesting experiences growing up and built quite a tough exterior for myself.
Max: Yeah, for some reason I thought this was all later-onset. I didn’t realize that this had been going on for so long.
Lia in studio with world-renowned soprano, Anna Nshania
Lia: It’s dragged on. It started off relatively early, surprisingly so, and it just lagged on over the years. I recently went to a world-renowned South Korean hospital while attending the World Wide Web conference. On Thursdays they happened to have a free clinic of seeing those with amyotrophic lateral sclerosis (ALS). It was one of their busiest days, but we didn’t know this until later. Not knowing more than two words of Korean, navigating to the hospital was hilarious.
We had help from kind strangers along the way. Such a friendly culture. Anyway, we get to the hospital, we explain our situation to four different people who had little to no English-speaking capabilities. They pointed us in the direction of one of the specialists, and we said, “We understand that it’s busy,” because they tried to explain that to us, but they didn’t need to, there were so many people there. We said we’d just wait, and if they had a minute, we’d speak to them then.
One of the specialists finally had a little window, or made one for us. We went to his office, and spend quite a bit of time. He spoke English fluently. Such a pleasant individual. He questioned my experiences, symptoms, drew a little diagram explaining ALS and expanding on the similarities that I may have to it.
I’d explain a scenario and he’d respond with, “Wait a minute, that’s weird.” After about maybe 15-20 minutes of explaining that I might have ALS, going back and forth, drawing diagrams; I mentioned my sensory involvement. He then he nixed the whole idea of my having ALS. And ended with, “I just don’t know what’s going on.”
(laughter)
He was dumbfounded. The moral of the story is that that’s the story of my life. Korea is doing a lot of research for individuals who have ALS, stem cell research—they’re making strides.
Max: It leaves that possibility out there, if you stay on that path of finding some kind of explanation and way of reversing things, and at the same time you’re finding out the possibility creatively of being able to fulfill yourself and your possibilities creatively with the singing.
Lia: For now, based on my symptoms, the verbiage we use is motor sensory peripheral neuropathy, which basically means that I have trouble with the movement and feeling of my lower extremities.
I had a muscle biopsy done several years ago that determined there had been generation and regeneration of my myelin sheaths, which are what cover the neurons. This is an important factor in the nervous system functiontioning properly.
Max: Ah!
Lia: We see pieces, but not enough to put the puzzle together.
Max: Wow. Are you taking anything for the pain or any of your symtoms?
Lia: I’m looking into a drug that is being used for individuals with multiple sclerosis (MS), called AMPYRA, it helps with gait. The good thing is, within months, it either works or not. I’m having a big issue with the insurance company not covering it because I don’t have an exact MS diagnoses. Even though it may help.
I’m threatening to pay out of pocket. They don’t want my money. Propaganda.
Max: (laughs) Have you heard of anybody or met anybody who seems to be similar enough to feel like you know might be dealing with the same thing?
Lia: When we we went to the Middle East, a mutual friend introduced us to an aspiring Palestinian model. Prior to going into the restaurant where we were going to meet, I noticed this young lady walking in. Arm in arm, for support, with another person. She had an almost identical gait as me. My initial reaction was, “Oh, hell no!”
(laughter)
That was a fun memory.
Max: So now you’re getting ready to go to China and sing?
Lia: Yes sir.
Max: That’s really exciting. Have you found an accompanist, got that part of it worked out?
Lia: I have a couple of pieces that I’ll be using recorded accompaniment, courtesy of my mother.
Max: That must have been neat with your mom.
Lia: She’s a woman of many talents.
Max: Very cool.
Lia: It’s quite an experience.
Max: That must be very cool for her, too, for the two of you.
Lia: Sometimes she’ll get lost in my singing and stop playing.
(laughter)
It’s hilarious. She says, “I’m sorry, I just got so into what you were doing!” I told her she can’t be doing that when we’re onstage. It’s wonderful to be able to share this with her.
Max: I think that is all really nice. What about your poetry? What is your poetry to you?
Lia: I think poetry is a creative combination of words that have come together like never before. I use poetry as a way of getting things out of my mind and onto the piece of paper. Performing them is another exciting art form.
Max: When you say perform them, you mean you recite them? Does music come into that?
Lia: Yes, I do mean reciting. The combination of music and poetry is something I’m working on. My one-woman show will have plenty of this woven into it.
Max: Those two have a natural fit. Things want to come off the page once they’re on the page.
Lia: That’s a nice way to put it.
Max: Even when we speak, there’s music.
Lia: The sposung word.
(laughter)
Trademark.
Max: Yeah (laughs). There’s melody and rhythm and all the things that make music, music. The best… [liamartirosyan.com]
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