Art of Survival

Local actress uses Shakespeare show to raise funds for Lyme disease

“I’m feeling energized, grateful, happy—and exhausted,” says Michal Victoria, on her first day off following the opening weekend of Shakespeare in the Cannery’s In the Mood, which puts a WWII, big-band musical spin on the playwright’s much-loved comedy Much Ado About Nothing.

In director David Lear’s thoroughly entertaining outdoor production, staged in crumbling “urban ruins” near Railroad Square, Victoria plays Antonia. It’s a small, meaty supporting role that requires her to dance, sing, run and (at one point) get very, very angry. All part of a large, constantly moving cast that includes David Yen (Benedick), Denise Elia Yen (Beatrice), Anthony Abatè (Don Pedro), Elizabeth Henry (Leonora), Isabella Peregrina (Hero and Constanza), Sam Coughlin (Claudio), Stefan Wenger (Don John), John Browning (Borachio), Brandon Wilson (Dogberry), and a live jazz band.

“It’s been such a wonderful thing, doing this show,” Victoria says, “since there was a time I really thought I’d never be able to step onstage again.”

This is Victoria’s first time performing in a production in nine years, since “retiring” to battle severe Lyme disease, an illness she’s be fighting for over 24 years, with long stretches where she’s been bedridden for months at a time. After reluctantly believing her acting days were over, recent alternative treatments have given Victoria just enough energy to return to the stage.

It hasn’t been easy.

“As I was preparing to do this show, I was thinking, ‘This is like training for a marathon,'” she says. “I literally started preparing months ahead, upping my exercise regimen, upping my immune support. I’ve totally been in training to do this.”

That gave Victoria the idea to use these performances to raise money for other sufferers of Lyme disease.

“I thought, ‘Wouldn’t it be great if people would sponsor me, making a pledge of $2 to $10 for each performance I complete, the way people pledge for every mile someone runs in a fundraising race?’ I can directly give that money to the GoFundMe campaigns of the neediest people I know with Lyme.”

She’s serious about those GoFundMe campaigns for people with Lyme disease.

“Everyone with Lyme has a GoFundMe,” she says. “It’s a devastating illness. As I said, doing In the Mood is definitely exhausting, but I’m grateful I’m healthy enough to do it at all, after all these years.

“And now I want to use these performances to help others who aren’t as lucky as I am.”

BOHEMIAN: This is the first show you’ve done in nine years, since you played Puck in A Midsummer Night’s Dream in Sebastopol?

MICHAL VICTORIA: Nine years, yes. That was a very physical show, too. It really was, and it was also a highlight of my life. In the nine years since, while I’ve been so sick, it’s often seemed like a whole different person did that show, someone other than me.

You were diagnosed previous to that show, right?

Yes. But no one knew. At the time I didn’t want to come out as having Lyme, and I didn’t tell [David Lear, director of that production, and also the director of In the Mood], because I didn’t want him to doubt I could do it. I knew I could, though I knew it would take a lot out of me. And it did. During one rehearsal I stopped, left the stage, threw up, and went back to rehearsal. I was struggling so hard, but I really wanted it. And I was surprised when people say my performance and said they couldn’t tell I was struggling.

At the time, I wasn’t under treatment, like I am now. But I knew that I had to be in life, you know. I had to live my life. At the time, I still didn’t fully understand what it meant to have Lyme disease. Lyme somehow makes you feel unreal.

When were you diagnosed?

Well, I’ve been sick for about 24 years. But I wasn’t really sure for a long time what it was, because testing for Lyme disease is very inaccurate. A lot of people go to a Lyme doctor, who specializes, and they have to look at these very specific tests. They call them “titers.” Because Lyme disease is so controversial, and there are so many differing opinions, I was always doubting that I had it. There was a part of me that kept saying, ‘Well, what if it isn’t Lyme? What if it’s something else?’

I’ve been to doctors who’ve tried to eliminate other possibilities. I’ve been tested for everything under the sun. I finally came out positive for what they call a co-infection of Lyme, which is . . .—OK, a quick Lyme tutorial.

Lyme disease is caused by bacteria. And sometimes these other things piggyback on those bacteria. When a tick bites you, it basically pukes out the bacteria into your bloodstream, and some people end up with co-infections. Some get the co-infection, but not Lyme; some get the Lyme, but no co-infection. I’ve got both. It’s kind of a lottery.

So I had all the classic symptoms, but the treatments are so expensive. And they aren’t covered by insurance. People lose their homes to pay for Lyme treatments—losing their life savings, becoming homeless.

None of the treatments I could afford were really working.

I’m so lucky that in the last year, I’ve found a treatment that has started giving me my life back. It’s working, and for me, it’s not that expensive. My boyfriend helped me with some of the treatment costs, and I’ve been able to raise the rest through a GoFundMe campaign, which is still operating.

Me and every other person with Lyme disease.

Really? It’s that common.

Oh, yeah, that’s totally true. Because the CDC does not yet recognize chronic Lyme disease, the medical community does not have up-to-date information on treating it. Insurance companies do not cover any treatments. Which is why people with Lyme are going broke, and why everyone has a GoFundMe.

I’m part of a number of Lyme support groups. There are people who are in far worse shape than me. There are homeless people with Lyme disease, who can’t afford any treatment and have to live on the street with it.

I don’t know how to better explain the torture of this disease than to say there is a famous doctor who treats Lyme, AIDS and cancer, and he’s said that, by far, his Lyme patients are in worse shape than his other patients. Lyme devastates you. I don’t want to make light of other diseases, but imagine you had Alzheimer’s and you knew it, and at the same time you had ALS, and were in constant pain while losing all of your motor abilities, and at the same time, your nervous system is on fire, and you constantly feel like there are bugs crawling all over you. Your heart has palpitations. Your eyesight starts to go, and you start feeling like a shell of yourself. These are all things that people with chronic Lyme disease experience.

You said earlier that you felt ‘unreal.’

Yes, that’s the best way to describe it. Like I’m here, but I’m not really here. Like I’m alive, but not really alive. And with Lyme, you can go on indefinitely like that, until your immune system breaks down so completely you get another secondary illness.

So Lyme disease can, in a way, be fatal, if the secondary illness is serious enough?

Absolutely. I’ve lost 13 friends since January, to Lyme disease. Most of those were suicides. That’s how hopeless people become, with this disease. I will tell you that a lot of people with Lyme are abandoned by their families and friends, because it’s very hard to deal with people who are suffering like crazy, and there’s no clear answer. The money lost devastates people. Most people with Lyme become isolated in their homes, if they are lucky to have homes.

And as common as it has become, so many doctors are not recognizing Lyme disease. They send people to neurologists or psychiatrists. It’s really very important that the CDC begin to recognize chronic Lyme disease, and people can pressure their representatives to take this seriously. Because, for those of us living with Lyme disease—or trying to—it’s very serious. Lyme is an international health crisis, and, in so many ways, it’s a life-or-death situation.

When you talk about friends who’ve died by suicide, are you talking about people you’ve met through your support groups?

Yes, mostly. In my communities, almost daily, someone posts something about how they are considering suicide, and the rest of us are talking them down, or trying to. And one day it was me being talked down. My community—strangers in online support groups, who are all I had left after my own family abandoned me—they are the ones who came through and talked me into giving life a chance again.

But that’s what I mean about how serious this is.

Four years ago, I applied to Final Exit, a group that helps people with “compassionate suicide,” for lack of a better phrase. It’s for people with terminal or chronic, untreatable illnesses. I didn’t believe in suicide for myself, but with no funds for treatment, and with no cure that is known, and being in so much neurological and mental pain, isolated and looking at maybe 30 years more of having to live with further degeneration, I was ready to go.

But then a series of small miracles happened that led me to finding the alternative treatment that is finally giving me some quality of life.

And here I am, performing outdoors in the heat and the cold, in a very vigorous musical.

Tell me a little more about your GoFundMe campaign, and the campaigns of other Lyme sufferers.

Yes, that’s been really important, not just for the money it’s provided, but as moral support. There have been times when I felt completely abandoned by everyone, feeling totally lost, and then someone would make a small donation to my GoFundMe. And I would think, “OK, OK. The universe is telling me to hang in there one more day.”

This is important for people to know. If you are able to donate anything at all to people’s GoFundMe accounts, even if it’s just a few dollars, it can still mean so much, because it can signal to people who are looking for some sign, that things are working for them, that there is hope.

So that’s part of your motivation for using the show as a way to raise money for other people with Lyme disease?

Yes. As I was preparing to do this show, I was thinking, “This is like training for a marathon.” I literally started preparing months ahead, upping my exercise regimen, upping my immune support. I’ve totally been in training to do this. And I thought, “Wouldn’t it be great if people would sponsor me, making a pledge for each performance I complete, the way people pledge for every mile people run in fundraising marathons?” And I can directly give that money to the GoFundMe’s of the neediest people I know with Lyme. I’ve already selected two people, one of whom is in a homeless shelter. I’m hoping people will donate between $2 and $10 per performance.

So how does it feel, being onstage again?

I’m feeling energized, grateful, happy—and exhausted. It’s been such a wonderful thing, doing this show, since there was a time I really thought I’d never be able to step onstage again.

There’s a scene where you really unload on someone, after your niece Hero has been wronged. Your anger was pretty impressive. What was that like?

That was really interesting, feeling all that. My character has to turn from being soothing and protective of her sister to a very quick, intense anger. But for a long time, because of the disease, I had no feelings. This disease takes away your feelings, your motivation, your creativity, and leaves you numb. I’ve just been starting to get those feelings back again.

The other part, which is actually a good thing, is that I’m so damn happy right now. I’m so grateful, that I’m kind of overwhelmed with joy, so it’s been hard for me to get to that place of anger. But when David [Lear] told me this play was about people coming back to life after a war, basically coming out of a coma, celebrating life after years of fear, I thought, “Wow! That’ show I feel! This is so cool that I can dovetail the way I’m feeling right now with this character who’s joyful after a long season of wartime.”

That really is how I feel. Like I’ve survived a war, the way people come out of that experience, when death was all around them, and how they just want to take the moment and suck its marrow. When I’m onstage, and I’m having a bad night, when it’s hard and exhausting and I hurt, I just take a moment to say, “Hey. Look at what you’re doing? This is so amazing. You’ve made it this far, you can make it through the show.”

Sonoma County Library