As executive director of the Cedaredge Area Chamber of Commerce, Alisha Komives predicted that her second year as coordinator of the town’s sprawling Applefest celebration would be graced with experienced leadership on her part along with good weather.

Turns out she was half right.

The crowd which flocked to Applefest 2019, Oct. 3-6 this year, enjoyed a weekend of sunny and temperate weather, but Alisha almost missed it.

She was too busy staying alive.

“Leading up to Applefest we knew that I was starting to have problems, but we just didn’t expect it to be so severe,” Alisha said in a phone interview. “I knew I’d be somewhat limited, but we had no idea I’d be completely taken out. I have what some people call Arnold- Chiari Malformation and essentially that means my brain is resting on my neck and that pressure is causing problems.”

Arnold-Chiari Malformation — aka CM1 — is named for a pair of late 19th century/early 20th century researchers who first identified this structural defect in the human cerebellum. The cerebellum is that portion of the body which sits at the intersection of the base of the brain and the upper portion of the spinal column. A malformation at that juncture causes neural malfunctions.

“When I am vertical for any length of time,” she explained, “I experience anything from severe pain to losing all mobility or I can have a seizure. It’s anybody’s guess what can happen. Unfortunately leading up to Applefest things were pretty severe.”

Alisha had been working long hours preparing for Applefest vendor check-in and this exertion caused her to experience a two-hour seizure. While she recuperated, chamber president Bruce Hovde reached out to Mitch and Trey Gronenthal and asked for their help. Mitch was the former president of the Cedaredge chamber and he had recently been appointed executive director of the Delta Area Chamber of Commerce. Trey, who owns Reve Portraits, is a member of the Cedaredge chamber and both have past experience with Applefest.

“We had a lot of new board members this year,” Alisha said, “so we needed people who were seasoned and could work with the more intricate behind-the-scenes details. Mitch had been chamber president and on the chamber board for five-plus years so his helping was a perfect solution, plus he and Trey had already planned on volunteering so it was good to have them run the whole thing.”

A call for help

Mitch and Trey Gronenthal got the call for help just before vendors were due to arrive on Friday. Trey had to reschedule a couple of portrait sessions and then he pitched in and worked all day Friday and again on both Saturday and Sunday. Mitch joined his partner to share the weekend duties and the couple remained at their posts throughout both days. It was a last minute arrangement, but they seemed to relish the challenge.

“Since we both have helped with Applefest for years, it felt like riding a bike,” said Mitch. “The magnitude of Applefest made it exhilarating to be a part of it.”

Alisha’s husband John and daughter K.K. — who had been shadowing her mother throughout Applefest preparation — also stepped up to help as did several chamber members and other volunteers.

A rough year

This year has been a rough year for Alisha. In January she had surgery to repair a pair of leaks in the dura mater membrane which is one of various flexible structures surrounding the brain and the one nearest the skull. The leaks were causing her to lose cerebral fluid, a circumstance which Alisha described succinctly. “Instead of having something to cushion my brain, all of a sudden it started bouncing off my skull.”

Despite the surgery, her brain still continued to fall. An average brain weighs around 3-and-a-half pounds and the pressure from that un-cushioned organ has caused her C4-C5-C6 vertebrae to “blow out,” she said. “And (those vertebrae) are pushing on my spinal cord and brain stem from one side and the Chiari — the pressure of my brain — is pushing on the other side.” Unfortunately, this two-way pressure is crimping vital neutral intersections causing her current pain, mobility issues and seizures.

“Most people who have Chiari are born with some form of it and it progresses through the years. Sometimes it becomes prominent when you’re first born or you could be hit with it in your 20s.”

She’s uncertain exactly when her Chiari manifested because no one else in her family had similar symptoms and the condition hadn’t shown up on earlier magnetic resonance imaging (MRI) scans. Most likely, she believes, the leakage of brain fluid is the circumstance which caused “the vortex which pulled my brain into my spine.”

Over time, and especially in light of her recent challenges, Alisha has come to terms with her condition. Going forward she plans to take it easy, working from home and staying horizontal as much as possible as she awaits further surgery. In the near future, her procedure will be coordinated by three physicians: a spine surgeon, a movement disorder specialist, and a neurosurgeon. The surgery will take place at the University of Colorado Anschutz Medical Campus in Aurora. It’ll be a complicated procedure, but she’s optimistic that everything necessary can be accomplished in a single eight- 10 hour surgery.

“It’ll be quite the adventure,” she quipped.

Going public

In the meantime, she has decided to go public with her situation in hopes of raising awareness. For information about the disease, she highly recommends the website ConquerChiari.org.

The website contains information about the basic symptoms of Chiari, where to find a specialist to help treat the disease, and how people can help through contributions or participating in awareness events such as walks which take place during Chiari Awareness Month each September. Without the website, people would have a difficult time learning about the disease.

“There’s not a lot of information out there about Chiari,” Alisha said, “Even for the people who have it, there’s only so much you can Google and a limited amount of literature. And I’ve been hesitant in the past about talking publicly about my disease, but I came to realize over this past year that not many people know what it is.”

Alisha said she also hopes that going public will help others deal with Chiari. She’s been openly posting updates about her condition on her Facebook page under Alisha Mayes Koimes. The postings are frank and upbeat and also highly personal; take her September 2019 post for example. In that shared narrative, her positive attitude is reflected by the image of a T-shirt message which states: “My brain is bigger than yours.” And her frankness in acknowledging her disease is evident in poignant photos of her caught in the throes of a Chiari seizure.

“This is something I’ve struggled with and it’s progressed to a point where my symptoms are quite unpredictable. Being in the community and being in the public eye, people have witnessed my tremors and my imbalance in falling or having an actual seizure. And I know these things left for a lot of questions, so rather than anybody being fearful, or worried, I wanted people to know that, yes, this is what’s going on with me and I’ll have it for the rest of my life.

“However, I’m okay with it because it’s my lot in life and this is what I’m supposed to deal with, but maybe by sharing there’s somebody else out there who either has Chiari or has a family member with Chiari and feels like they’re alone. And we’re not.”

An active

mother of six

Alisha and her husband John have six children, three boys and three girls. The family moved from California to Delta nine years ago. John is a Colorado native and the couple wanted to return to his home state to raise their kids here. Now all have flown the nest, except K.K. who’s completing high school this year; two of the others live in Grand Junction, one in California, one in Eagle, and one in Cedaredge.

In 2018, with most of their children out on their own, Alisha was looking for an opportunity to return to the workplace and she was thrilled to earn the chamber position which included the role of coordinating the town’s giant autumn celebration — a sprawling festival which this year hosted over 20,000 visitors.

So how did she feel about missing Applefest this year?

“Actually I did come on Sunday,” she laughed, “I was there on my little scooter because there were some gifts I wanted to buy for my grandkids for Christmas. I wasn’t able to walk, but I was able to spend an hour at the festival — unfortunately I paid for it with a couple of more seizures that day. But I can proudly wear the (Applefest 2019) T-shirt and say I was there.”

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