Jess McGuinty: Brave Through It All

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Article courtesy of the Mad River Union:

Article by Kevin L. Hoover Mad River Union

Jessica McGuinty, her resemblance to Brave heroine Princess Merida inspired this movie poster homage.

While her fragile health was never any secret – far from it – the unexpected passing of Jessica McGuinty last week at age 47 devastated her innumerable friends and associates in Humboldt and beyond.

The spirited, charismatic redhead overcame childhood mockery and outcasting for being different, leveraging the trauma from teasing about her curly locks into the successful, Arcata-based Jessicurl company.

Adversity, and beating it back, was to become a theme for Jess, as she battled one serious affliction after another through her adult life. But she met her grave medical challenges and frequent surgeries not just head-on, but with extraordinary openness and even laughter, eagerly sharing her health odyssey in often unnerving detail.

When Jess’s heart, her brain and parts in between went awry, the painful problems never tempered her zest for life, nor her sense of humor – especially about her health situation.

For anyone who knew her, Jess’s joyous, ready laugh will never leave their ears. A world without it wasn’t something anyone seemed prepared for.

The terrible news came in an announcement from Jessicurl President Cedar Reuben (see below). In ensuing days, social media was awash in remembrances, tributes and photos of the always-smiling Jess with her many, many friends around the world. Her infectious exuberance and positivity was a common theme.

“She was the best and will never be forgotten. She would go off on me if this post is too sappy so I will just say, Rest in Heaven you beautiful, crazy girl,” said Stacey Taylor.

“To say that Jessica McGuinty was amazing and passionate and creative and funny wouldn’t do her justice,” aid Michelle Breyer. “She has been such an important person in my life – the best curlfriend anyone could ask for!”

“Jessica McGuinty was a master class in joy, laughter and strength, and we’re forever better because of her. Rest easy, Jess,” said Mike Dronkers.

“She was an amazing woman and a ceiling shatterer in the curly hair industry! RIP sweet Angel!” said Jackie White.

The irony of a person so engaged with life being so deeply and frequently beset with life-threatening conditions was not lost on Jess, who gleefully related the reversals with wry observations and laughter. But the humor belied a serious purpose with the disclosures: to help others get some  things that hadn’t always been available to her: accurate diagnoses and treatment.

Thanks to her unabashed openness, Jess’s grueling medical travails were documented in detail – harrowing and hilarious in equal measure in the pages of this newspaper and the Arcata Eye.

A 2012 Eye story, “Brave Jessica McGuinty Battles Curly Hairscrimination,” documented her early life and the harassment over her spiraly tresses that she channeled into productive motivation. It also told of her lifelong mitrovalve prolapse, and later tachycardia and atrial fibrillation and the multiple operations that tried to deal with the conditions.

“It makes me more stubborn,” Jess said at the time. “I come from a very Carpe Diem kind of family. There’s an element of that in the McGuinty DNA.”

A 2013 story, “Arcata’s Sweetheart On The Mend After Heart Surgery No. 6” covered her ongoing medical battles, while a 2014 Union April Fool story titled “Jess McGuinty Undergoes 173rd Heart Surgery.”

Also in 2013, the Union and North Coast Journal organized a benefit for Jess and then-stroke victim Bob Doran at Humbrews.

But the bad health news just kept on coming. In 2017, her appendix exploded with ensuing complications, forcing several more hospital stays.

In 2019, following brutal migraine headaches, she was diagnosed with Chiari (pronounced key-ARE-ee) Malformation, a rare disorder in which the cerebellum is partly pushed out of the bottom of the skull. A Union story, “Jessica McGuinty is finally winning over her own heart and mind” explained her newest surgery, in which part of her brain was removed, accompanied by a gnarly photo of the huge scar on the back of her head.

“JUST when they fix my damn heart, now brain surgery, eh? Can I ever give you guys a break?” she told her social media friends.

Jess and her husband Chris Spohn

But Jess herself was to get at least one well-deserved break when she found true love in the person of Chris Spohn, who was to become her “handsome, dimpled Superman” husband. After connecting online, Chris actually met her in the hospital during her recovery from one of several appendix-related abscesses.

“He really is the best,” Jess said. “I’m so very lucky and can only hope to make him feel as lucky as I do.”

But a new diagnosis just this year provided both revelations and more bad news.

Last Wednesday, following news of her passing, Chris explained the situation. “ She had fought a disease her entire life called Ehlers-Danlos Syndrome: ehlers-danlos.com/what-is-eds.”

EDS, says the website, is a group of 13 heritable connective tissue disorders. The conditions are caused by genetic changes that affect connective tissue and play out with multiple kinds of symptoms and consequences.

Chris offered his uniquely well-informed perspective on Jess’s passing. “I believe that Jess’ story and legacy is not just about Jessicurl but about the people she touched and the love she gave to so many individuals,” he said. “Through all the larger-than-life moments she had, they were all done through the constant pain of Ehlers-Danlos.”

And yet the irrepressible Jess never stopped inventing and making real her ideas.

“Jess was a true genius at inventing products,” Chris said. “She made some amazing stuff here at our house and finished a new product the day before she passed away.”

Jess & her father Moe

Jess’s father, Maurice “Moe” McGuinty aka Mighty Moe McGuinty, was never far from her thoughts, according to Chris. Having been born in North Bay, Ontario, and being Canadian by birth was important to her, as was the nature and nurture outcomes Moe left her with.

“Jess would always talk about the things she inherited from her dad,” he said.

She credited Moe with her comedic timing and ability to be hilarious, her showmanship and storytelling ability, and her most endearing and defining attribute – the signature curly hair.

“Without that, she’d never have created Jessicurl,” Chris said.

Jess began the company by crafting its first products in her kitchen. On the last full day of her life, she was still doing just that in another makeshift home lab. Photos by Chris show her blending an array of 3o ingredients about which she was quite particular – into some new potion.

“I had to create a work area in our living room so she could work when she had the strength,” Chris said. “She wanted it separate from her bed and medical stuff. She had me running to a natural market to find a few extra things to pick up, and schooled me emphatically about what she needed.”

His patient diligence paid off with a priceless moment in what was to be Jess’s final hours. “I got the biggest hug returning home,” he said.

If Jess’s life was an example of battling adversity, her final days might be a model for how to exit mindfully, with grace and poise.

POM POM QUEEN Jess at 2011’s Bat N’ Rouge benefit for the Arcata Ridge Trail.

“As sad and as devastating losing Jess is, she gave us a blueprint on how to move on,” Chris said. “She had a lot of serious conversations over the past few weeks and led them all with love. Her goal was to try and end everything with laughter.”

Continued Chris, “She also wanted me to let everyone know how sorry she was that she couldn’t reach out and hug all of her family and friends who have supported her over the years. She didn’t have the strength in the end for very many conversations. She really wanted everyone who had supported her to know how much she cared about you and loved you. She truly wished she had enough strength to give everyone one last hug and one last laugh.”

Her legacy will live on in a practical way, with useful products that support the curlier among us.

“The other huge thing that Jess wanted everyone to know is that over the last five years she has been working with an amazing team to continue on her work with Jessicurl,” Chris said. “The legacy of Jessicurl is in good hands and is expanding to touch more lives and give everyone ‘the right to remain curly.’ She felt complete knowing that Jessicurl will live on with the integrity and passion that she started it with.”

But that’s not all. Even death couldn’t quell the ravishing redhead’s sassy streak. As related by Chris:

“In the end, Jess wanted me to remind everyone to ‘be human’ and of course, ‘F*ck you Ehlers-Danlos’!”

Earlier: Jess McGuinty: Founder of Arcata-based Jessicurl Passes