Early in this interview, I get the feeling Jenny Myers is trying to tell us something.

“So... had you ever heard of lupus before?”

It’s one of the first questions I ask people with lupus when I chat to them initially.

 
“No. Never. I remember the doctor drawing a picture and saying my body was attacking itself. He said he had to let me know it was thought to be terminal, but most patients lived two years after diagnosis. If I surpassed that, I could not have children. It was scary.”

I wasn’t expecting a response like that. If that’s not a scary situation for a thirteen year-old to deal with, I don’t know what is.

Okay, next question.

 
“So... how does lupus affect you Jen?”

“I have SLE. It’s sort of been a snowball effect. When I was pregnant with my daughter I was diagnosed with lupus nephritis, and then, in no particular order; sjorgrens, raynauds, vasculitis, neuropothy, RA, fibromyalgia, degenerative disc disease and I can’t remember what else.

I’ve suffered a small stroke possibly due to the vasculitis attacking my brain. I’ve had major back surgery and it’s about that time again. I currently have six herniated discs. Unfortunately I have never gone into a remission phase with my illnesses since my diagnosis at thirteen. My kidneys are involved as well as my lungs and my brain. I am extremely light sensitive and get rashes almost immediately when under florescent lights or if I’m out in the sun. I have to limit my time in stores and can’t go on outdoor outings with my family.

 
I get pneumonia very easily and deal with that about four or five times a year. I get bad lupus headaches fairly often and have full body pain every day. It also affects my short term memory to the point of me not being able to remember people from time to time. We are currently trying to get a better grasp on that. I try to take life one day at a time. I have long bouts with insomnia and am on more meds than I can remember.

I also deal with psychological issues. Most of the time I am referred to as being Pollyanna because that’s what I work hard to show people, but honestly, some days it’s hard to see a point. That doesn’t last for long. I see my kids and their enthusiasm for what lies ahead. I snap out of it fairly fast.”

Once again, I didn’t expect such an answer. How can I ever complain about minor, trivial problems when someone so remarkably radiating has dealt with health issues like this? Why did I assume this was going to be one of those glossy interviews merely highlighting somebody’s obvious talent? Why is this lady being so brutally honest?

 
I’d seen Jenny’s website over a year ago. So I knew there was an opera singer out there with lupus. And by chance, we recently hooked up via the internet. I’d read how Jenny was once a figure skater too. So I just assumed I’d be learning the story about the majestic skater who ended up singing. However, it didn’t take long to realize there was more to this woman than my assumptions would suggest. Even her early skating background illustrated her determination.

“I literally grew up on the ice. My parents couldn’t afford a sitter so I would skate while they taught. I skated at seven months and walked shortly thereafter. I started competing at the age of three and went through my senior test. I went to all the big qualifying competitions including Junior Nationals but shortly after, I had to stop.

 
The doctor advised me to quit because I was always sick and in a lot of pain. At that point they didn’t know what was going on, but my symptoms began to get more and more severe. About a year later, I went to the ER and was admitted for kidney failure. I was diagnosed shortly after.”

I honestly thought my common questions would be skimmed over and I’d be asking about axels and arias in no time. So let’s get the last predictable question out of the way.

“So Jen, did it take long to get diagnosed with lupus?”

“Compared to others, not really. I had all the markers except for one. Knowing what I know now, I had the symptoms for a long time. We wrote the chronic pain off to being a skater. The cold environment, falls, long hours and stress are hard on the body so it was always a ‘push through the pain’ situation. I was constantly sick with some sort of respiratory infection. I had swollen painful joints and it seemed like I always had a rash on my face. People just thought it was a nervous rash."

I didn’t miss the contradiction in her answer. You see, I get the feeling that Jenny’s acknowledging that others are suffering a great deal more than her, which I find hard to fathom. Silently, she’s been through a hell of a lot.

 
When Jenny’s skating came to a premature halt, her mother was working with a group of kids who were performing at the local community theater. One girl in particular spent a lot of time at the family home and took Jenny under her wing. She knew how hard it was for her to not be skating anymore, so she gave Jenny a few voice lessons and taught her a song.

 
“She had me go down and audition for the local children’s performing group. I got the role and I have been singing and performing ever since. That girl was Tony Award winner Audra McDonald. I looked up to her then and still do now,” recalls Jenny.

I wonder why opera of all genres and what inspired her? Once again, there’s no short answer.

“I love all music but I remember the first opera I ever saw. It was Le Nozze Di Figaro. I think I was ten or eleven. It stunned me. I was so moved I cried from curtain up to curtain down. I just knew that I had to do that. I had to be an opera singer. It was sort of this all encompassing, out of body experience. I just knew, and have never second guessed, what I’m supposed to do. As I got older I found the challenge of the music drove me. I am now realizing how lucky I am to know my life’s path.

One teacher in particular really believed in me. She helped me channel my anger and insecurity into the music. In opera there are so many strong feelings and emotions. On some levels, I felt like I could relate to these characters and express myself in ways I never thought I could. This teacher showed me that yes, I was different, but that would make me special. It would take me, and still does take me; ten times the work it takes someone who is healthy.”

And it’s not difficult to see how passionate Jenny is about her chosen pursuit.

 
“Singing is a sport. It takes every muscle in the body to properly produce the sound needed to carry over an orchestra on a nightly basis, so it’s physically draining. There is a lot of memorization work I have to do which is a huge challenge, considering I can’t remember where I parked my car. I have to remember pages and pages of music and very rarely is it in English - usually Italian, German, French, Russian, and Latin etcetera.

 
So my teacher’s point was, that if I had enough passion, discipline and drive to make all of that happen, how could I not succeed? I would also take it a lot more seriously because I would make a lot of sacrifices to make it. I have missed so many social engagements due to performances.”

Like so many quests, we only see the final product or result. We’re oblivious to the hours and hours of labor involved. And when you consider Jenny was hampered by lupus, it makes her achievements all the more incredible. And I also feel a sense of guilt by not realizing what effort and sacrifices are involved for the opera singer, healthy or otherwise.

You’d also assume having a young family, a career as a singer and dealing with lupus would be enough to keep you busy. But not Jenny Myers. She runs and teaches at two vocal studios in Fresno California, and one in the bay area. She also runs and teaches a creative music program for a private school. She runs a Summer Institute to upcoming artists at the local state college and is also directing a musical for the children’s theater.

 
As for her own career, Jenny’s currently getting ready to debut two original operas and do the original cast recording. She will debut them locally in California and then go to Greece in a few months to debut them there.

I ask her how important teaching is to her.

“I love teaching. I learn so much about my voice and myself as a person. Being a voice teacher is a lot like being a therapist. My students trust me with their voice. The voice is such a vulnerable instrument and it’s not like any other. If you don’t have a good lesson, you can put your violin in the closet and come back to it later - not true with the voice. It is very personal and defines who you are. When being judged in a competition, it’s the student as a whole and not just the way someone has played an instrument. So I take great pride in guiding young artists through not just technical development, but also personal growth. A job I certainly don’t take lightly.”

Growing up in a musical household with skating programs and what-not, Jenny’s early musical influences included Dorris Day, Barbara Streisand, Julie Andrews, Judy Garland, Ann-Margaret and Shirley Jones to name a talented bunch. And as for career highlights of her own, she’s lucky to have had several. It’s a close tie between playing the role of Cosette in the national tour of Les Miserable and playing Mimi in La Boheme, which were both her dream roles.

 
“To be perfectly honest, my role as Mom to my two kids trumps any performance I have ever given,” Jenny adds.

I’m curious when the theme turns towards Jenny’s family. When she was first diagnosed, did her friends and family understand lupus back then?

“No, there was a lot of denial. I don’t know if they fully understand it now. I do remember that we didn’t tell anyone because we were afraid people would either not believe me, because they had never heard of it, or not want to be near me because they didn’t know what lupus was.

 
Unfortunately I have been advised several times in my life not to tell people about my lupus, especially having the career I have. I would be a liability. I could get sick and not be able to go on, I could lose my hair, gain weight, or get an unsightly rash - all cause to not hire me. So I kept my secret for a long time.”

“So Jen, how about the support you receive from your family and friends now?”

“I really didn’t tell many people I have lupus until a few years ago. I can honestly say I should have given my friends and family the benefit of the doubt. It is tough, I won’t lie. Some days I can’t even get out of bed and my family has to pick up the slack. But those people that I have let into my life are very supportive and honest. Sometimes I need to be reminded that hey, you’re tired because you have lupus, sit down.”

And it’s not surprising that Jenny’s family inspires her along with others with a chronic illness. Her husband Jeff has a blog titled ‘My Wife Has Lupus’ and Jenny meets with other patients in Fresno as part of a group sponsored by The Lupus Foundation of America. When I ask her about future ambitions, the subject of lupus is predominant, as is her project, Hope through Song.

“I am slowly but surely writing and recording songs to appear on a compilation album dedicated to informing and educating people about lupus and raising funds to be given to various lupus organizations. It is my desire to include the songs of other artists living with lupus.  Our monthly support group reminds me I am not alone. They have rallied around me and my family during more than one hospital visit. I sure love them.”

Now that Jenny’s not exactly quiet about her lupus, I can’t help asking what message she has for someone recently diagnosed.

“Hang in there, don’t give up, take it seriously, talk about it and tell people. Live life to its fullest on the days you can and be thankful for those days when you just can’t."

"And how important is lupus advocacy and awareness now that everything’s out in the open?"

“Incredibly. I am very passionate about educating people and finding a cure. We lose so many people to this painful confusing disease. I know we can do it. My dream is to touch as many lives through music as possible and spread the word about lupus.

 
The more people that know about lupus the better chance we have at moving closer to not only finding new medications, but to actually finding a cure. It would also be amazing to be a principal singer at the Metropolitan Opera. Talk about getting exposure for this awful disease.”

Absolutely.

I feel privileged that having a form of lupus has allowed me to meet someone so motivated. I feel privileged that Jenny now has the opportunity to tell us about her life with lupus and inspire others. Her openness and her enthusiasm for being part of this interview surprised me. I sense it’s a relief for Jenny that she can now discuss her lupus openly.

So I ask her if that’s the case and this time I expect a short, straightforward answer.

Thankfully Jenny continues after apologizing for being so ‘wordy.’

“It's so nice to be myself. Good days, bad days. It’s been difficult because one day I would be bubbly and fun, and the next I wouldn't even return a phone call. I was labeled many things. Flaky was my least favorite because I am not. When I am able to follow through, it's with 200%. I like to do things right.

 
At times I can't even remember people I know, so as you can see I was a mystery. Is she nice? Does she think she's better than us?

 
So yes, I am so relieved to be able to tell people I am me, I am nice, and I have Lupus.”
 

~ ~ ~
 

© Geoff Thomas - The Lupus Magazine 2010

Visit Jenny's websites:

Hope Through Song - Jenny's musical project for lupus artists
My Wife Has Lupus - Jeff Myers' Blog 
Jenny Myers' Vocal Studio

Jenny's Official Website