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Let's All Leap for Lupus

Let's All Leap for Lupus

by Annette O'Neil

Features | July 2018
Sunday, July 1, 2018

Valinda Mitchell and her husband, John, are vacationing in France. These lovebirds travel a lot … a month in Ireland here, a long stint jetting around Australia there. When your childhood sweetheart and the mother of your four children says her final goodbyes to the family from a hospital bed and manages to claw her way back, such forays are understandable and maybe even necessary. Wandering hand in hand around Paris is the only way to respond, n’est-ce pas?

It wasn’t skydiving that brought the Mitchells to that awful day at the hospital. It was lupus, a chronic, debilitating autoimmune disease that has resulted in much, much sadder stories for couples around the world. The Mitchells, as they’re happy to tell you, are very lucky.

Lupus, to put it mildly, is a beast. It can damage any body part or system. The immune system of a lupus sufferer creates auto-antibodies that attack and destroy healthy tissue—often, quite suddenly and unexpectedly—and inflict inflammation, debilitating pain and damage in a lifelong pattern of flare and remission (meaning that symptoms may be incapacitating one day and near absent the next). Few really effective and non-toxic medical treatments for these flares exist. According to the Lupus Research Alliance, only one lupus treatment has been approved in nearly 60 years. There is no cure.

On the best days, Valinda feels like she has the flu. Working through the malaise is an all-day-every-day full-time job. That said, the first thing most people notice about Valinda is most certainly not her illness. The first thing they notice is that she’s drop-dead gorgeous. Soon after that, they notice how perfectly lovely a human she is underneath all that Disney-princess pretty. Only a rare few have gotten a peek at the iron toughness that undergirds her singularly kind and gentle manner.

Diagnosis

Lupus wasn’t anywhere on Valinda’s radar when she first started skydiving. Not really, at least. A teenager at the time, she made those first jumps near where she was born and raised in Utah. The thrill of freefall was matched only by the thrill of falling for her instructor. Luckily (and, well, predictably), it was entirely requited. Valinda and John married soon after. The pair moved to Washington—still their home today, 35 years later—and settled into their position at the heart of the community at Kapowsin Air Sports, now in Shelton. After the wedding, Valinda and John had four children in five years.

“When I was jumping, most people didn’t even know I had lupus,” Valinda said. “I had a lot of difficulty with it, but I didn’t really say anything about it. Every once in a while, people would ask why I was limping or why I was having trouble using my hands. I would just say I had arthritis.”

It was 1988, when Valinda was only 22 years old, that lupus really elbowed its way in. Her first baby had just been born. “I’d probably had [lupus] since puberty,” Valinda explained. “It was a long battle. I had been in and out of the hospital with these inexplicable symptoms for years. But when you give birth, your whole immune system goes on red alert. Since lupus is an autoimmune disease, the symptoms went through the roof. They were finally able to diagnose me.”

The disease went into remission (somewhat, at least) throughout Valinda’s subsequent three pregnancies. After the Mitchells’ last child was born, it came back with sharpened teeth. “It started progressively getting worse and worse,” Valinda said. “It was like a snowball rolling downhill.”

In 2004, when Valinda was 37, she had her most devastating flare to date. Her kidneys were failing. Her lungs were hemorrhaging. The doctors told John to make funeral arrangements. “They brought the kids in when I was in a coma to say goodbye,” Valinda said. 

Miraculously, she survived. And, as private as the Mitchells had been about Valinda’s health challenges, that’s a hard secret to keep. When the Washington sky family found out what had been going on, they mobilized. So did the Mitchells.

Mobilization

“The skydiving community really came together,” Valinda said, “because we have been jumping out there for a long time. When I did come out of the coma and did survive, some of the skydivers close to us insisted that we all needed to do something. So we did the first Leap for Lupus boogie.” Held in August 2005, the boogie benefited the Lupus Foundation of America. It was, to put it mildly, a learning experience for the couple and their stalwart supporters.

“[The LFA] were super hard to work with,” Valinda said, wincing. “We wanted the money to go to medical research. They ended up putting it toward something else entirely. And, when we raised $18,000 for them, they didn’t even write us a thank-you note.”

“The LFA mostly raises awareness,” she continued, “which is good, but it was most effective years ago when pretty much nobody knew what lupus was. And, quite frankly, awareness does me no good. It doesn’t do any actual lupus sufferer any good. We’re still having to live through each day with this, and we’re still dying. I want better, more effective treatments. I want something that’s going to help me and my fellow lupus people in a meaningful way.”

“But we had so much fun doing the boogie itself,” she added, brightening. “Everyone came together. It was inspiring.”

It was such a great time, in fact, that the Mitchells were inspired to tackle the steep uphill climb of incorporating. They decided that the only way forward was to found their own non-profit. That way, they could be sure of where the money was going and what it was going to do. “We wanted to know where every penny would go,” Valinda noted. “So we took a year off and built the non-profit. All of the money to run it comes out of our own pocket, and 100 percent of every dollar that is donated goes toward lupus research.”

“When we do boogies, we pay for everything ourselves: the dinner, the T-shirts, everything,” Valinda said. “All the registrations and every donation that comes in goes toward the goal. We have to put a lot of money into every year, and a lot of work.”

Today, thanks to the Mitchells’ tireless efforts, the Leap for Lupus foundation is going strong. Dedicated to funding medical research into the causes of and treatments for lupus, LFL remains a self-funded foundation run entirely by volunteers. One hundred percent of every donation goes directly to the University of Washington lupus research department, where Valinda says the team is making “great strides” in lupus research.

Living

Aside from research funding, the other central tenet of the Leap for Lupus effort is to get lupus patients out of the frustrating, painful spaces in their own heads and out into the sky. “The primary goal for any lupus patient is to get out and live,” Valinda explained. “They are in so much pain all the time. Even on the best days, they feel like they have the flu. That doesn’t even touch the bad days. It is really good to get people who are chronically ill outside, to show them something like skydiving, to help them break out of the doldrums of everyday life. Skydiving puts everything in perspective, and it gives you a new outlook on life. And that’s what I hope that a lot of people with lupus can have. They certainly need it.”

“The way we do it,” Valinda continued, “is that if someone gathers $500 dollars in donations, we give them a free tandem skydive. Over the years, there have been a lot of lupus people who have come out and done just that. Honestly, it has been pretty great.”

The Leap for Lupus annual boogie was a highlight on the Pacific Northwest skydiving scene for nearly a decade. Every year, the boogie would feature some kind of record jump. The Mitchells would put on a big seafood dinner. There would be T-shirts, a band and a keenly anticipated party. And every year, the LFL would proudly present a significant check to the University of Washington lupus research department.

While the Leap for Lupus foundation still facilitates fundraising tandems year-round, the Leap For Lupus Boogie itself is currently on hiatus. Between the frustrating vagaries of Pacific Northwest weather and the couple’s newly nomadic lifestyle, it’s been four years since the last one. Now, however, the Mitchells are chomping at the bit to get this incredibly worthy event started again … perhaps on new turf.

“We would love to have Leap for Lupus boogies at other drop zones,” Valinda said. “We had such great success with them. If somebody were inspired to help us get something going at another DZ, that would help so much.”

Valinda is also quick to add that skydivers are welcome to raise funds to get the free tandem and then give the tandem to someone they’re keen to introduce to the wonders of skydiving. (That’s one heck of a stocking stuffer, no?) She said, “Even as we wait for the next Leap for Lupus Boogie, each one of those jumps brings in more awareness and money for research. We want people to know that we can set them up for anyone at any drop zone. That way, we can spread the awareness and the skydiving.”

More information about the Leap for Lupus foundation is available at leapforlupus.org.

 

About the Author
Annette O’Neil, D-33263, is a multidisciplinary air sports athlete: skydiver, BASE jumper, paraglider and speed-wing pilot. Location-independent, she travels the world full-time as a freelance writer and producer. In her spare time, she loves flopping around on a yoga mat and carpetbombing Facebook from Instagram. 

 

 

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