Leo Adam Biga's My Inside Stories

Here’s a story I did a couple years ago or so about an Omaha theater stalwart, Lara Marsh, who’s touched many people with her winning personality and generous spirit and those good vibes and works have come back to her ten fold as she battles cystic fibrosis and faces the prospect of a double lung transplant.  This story appeared on the eve of a fundraiser for her, one of many such events that the local theater community has organized on her behalf.

Lara Marsh’s breath of life

©by Leo Adam Biga

Originally appeared in The Reader (www.thereader.com)

“Got Oxygen? This question on top of Pikes Peak at 14,110 feet is very funny and ironic at the same time. I immediately bought a T-shirt and the expression always makes me smile. But this question, in Omaha at 936 feet, somehow loses all its humor.”
Cystic Fibrosis survivor Lara Marsh in her online journal/blog

Veteran Omaha stage manager Lara Marsh is in a fight for her life with Cystic Fibrosis. The inherited, chronic disease produces a thick, sticky mucus that impairs the respiratory and digestive systems. She needs $55,000 to get the double lung transplant required for her only chance at anything like a normal life span. She’s already exceeded CF life expectancies.

“When I was 4 the doctors told my parents I would never see 5. When I was 5, I wasn’t supposed to make it past 8. At 8, the average life expectancy was 14. The average death age for a female now is 37, and I’m 39, so I’ve done really well, but for me it’s unacceptable to die that young.”

Her sister Amy had her life cut short by CF at 18. By contrast, Lara’s married and the step mother of five children. She travels. She’s a college graduate (University of Nebraska at Omaha). She enjoys a career as Nebraska Theatre Caravan Artistic Coordinator/Apprentice Coordinator at the Omaha Community Playhouse, where she also stage manages. She’s beaten the odds. She also can’t recall when illness was not part of her life.

“It doesn’t define me and yet it’s made me a big part of who I am. It’s just all I remember. I am very much a positive person always striving for goals,” she said. “I remember as a small child joking but not really joking with my doctor, ‘You can’t retire until I die because I’m going to be the oldest living CFer in the world.’
Of course, the older you get reality comes into play, seeing the progression of the disease, knowing where I’m really at compared to where I wish I was at. Another whole side of this is the pride factor of showing people I’m a human being dealing with this. I don’t like to show the negativity, I don’t like to show the weakness.”

Lara’s lately revealed more about living with the disease via campaigns raising funds for her transplant needs. Her thespian peers, along with the Children’s Organ Transplant Association, have organized Places, Please! benefits at area theaters. Playwright/director Kevin Lawler said Lara’s positive vibe attracts much support. “She is the most talented stage manager I have ever worked with, a real artist, and one of the most fantastic people I have ever met. She is deeply beloved by the entire theater community in Omaha. A truly exceptional person.” He said her “extraordinary story” is literally “a race against time.”

More than $45,000 has been raised on her behalf. COTA matches some monies raised. Proceeds from this Saturday’s noon to 6 p.m. Lungs for Lara event at Sumtur Amphitheater at Walnut Creek in Papillion will go toward her transplant fund. The organizers are Random Acts of Kindness, COTA, Places, Please! and Cells for Life. There will be raffles, booths, a karaoke competition, a bounce house, live bands and food. Admission is a used cell phone or ink cartridge or a $5 donation.

Lara’s symptoms sometimes prevent her from attending such events. It may be exhaustion or infection. Coughing jags are frequent. The worst thing about CF, she said, “is knowing it’s never going to get better without the transplant. And as much as I try to do the regimens (respiratory treatments, antibiotic IVs, exercise) I’m supposed to and live life and be positive and do this, and do that, the progression still happens, and I really got hit in the face with that last year. Big time.” Her Forced Expiratory volume levels dropped, necessitating she go on oxygen.

“It’s not like I did anything to bring it on, it just happened, and so as much as I try to do to prevent it my body reminds me, Hey, this is still going to happen, whether you like it or not. Essentially, I’m not a 39 year-old. My insides are more like a 60-somethings. And so when I catch a cold or whatever it’s slower for my body to recover. You never know about side effects or other things that could go wrong, especially with a transplant.”

A reminder of the dangers is the experience of Amy, who died of complications from the procedure.

“I’m not afraid to get the transplant,” said Lara. “I already decided a long time ago I would do it. I just want to get it over with, really. I’m ready to move on with my life. But I’m nervous about how my body will react and how long it will take to recoup.”

Periodic hospitalizations take Lara away from what she loves most — friends, family, the theater. Because CF’s been her lifetime companion she’s had the bittersweet experience of befriending and losing fellow travelers.

“There’s been some CFers I’ve gotten close with and most of them have died. All the ones I knew growing up have passed. This one gal I knew, we had a 20-year friendship, and she passed last year. She’s the last one.”

Still, Lara seeks out other sufferers, even though meeting entails risks. “We can be a danger to each other if we are near one another and are contagious, and so we exercise what we call the three-foot rule — stay at least three feet from each other. And don’t touch. It’s harder for us to get to know each other now because of HIPPA privacy laws.” Despite red tape, she manages finding folks who defy the odds. “I’ve definitely been exposed to enough negative results that I need to find some positive ones, so I’ve been meeting some patients who are doing really well .”

She resists limitations. “One thing my doctors and I recently talked about is my CF could reach a point where I have to quit work, and I told them I can’t fathom it, it’s unacceptable…” Her precious travel could also be curtailed. “It’s one of my favorite things to do in life. Something CF has contributed to is me wanting to experience the most out of life, to see anything and everything I can. I have a goal to see all 50 states. I have about seven left. I’ve been very fortunate.”

Her “ultimate dream” is visiting Australia, and not just for the beaches. “I’ve loved Koalas since I was a little kid…I want to go pet a Koala.”

“Recovery is not like it used to be and that is disturbing.”
Lara Marsh blog entry

Visit COTA’s Web site for Lara, which contains her blogs, at www.cotaforlaram.com.

Related articles

• Cystic Fibrosis No Longer a Kids’ Disease (abcnews.go.com)
• Cystic fibrosis breakthrough reveals why females fare worse than males (medicalxpress.com)
• May is Cystic Fibrosis Awareness Month (sacbee.com)
• Foundation Hopes To Raise Funds, Hope For Cystic Fibrosis Month (detroit.cbslocal.com)