Edition 14 | Fall 2018
Story by Aitana Yvette Mallari
Photo by Loren Worthington
The AZ Lupus Warriors meet once a month. Sometimes, there are guest speakers and doctors. And the people listening to them are often new faces. A few slick with tears, still red from the sting of a fresh diagnosis. During one of these meetings, a woman began to cry.
It’s not an uncommon sight. Lupus is a systemic autoimmune disease that can affect the joints, skin, brain, kidneys, heart and lungs. Symptoms and complications vary from person to person. But there is one commonality: there is no cure.
If there were, Toni Grimes, would certainly have known. The group’s founder had lupus for the past 12 years, which affects her brain and spinal cord.
But for the crying woman in front of her, all of it was new—the pain, the uncertainty, a schedule drowning in doctors appointments and a carousel of medications.
The woman’s husband turned towards Grimes.
“What do I do?”
Grimes paused, more than a decade of experience on the tip of her tongue.
“Keep doing what you’re doing,” she said. “Loving her.”
This October, Grimes will be inducted into the Arizona Veterans Hall of Fame. There are 25 living inductees, including her, and three awards are given posthumously.
I meet her for the first time on the second floor of Ability360’s Sports & Fitness Center, right at the end of her shift. Grimes, a personal trainer, exudes graceful athleticism in her grey uniform. Although she had been awake since the blue of dawn, she looks like she can run a mile at any moment.
To a passerby, she looks perfectly healthy.
But they’d be wrong.
Grimes leads me to the stands of an empty basketball court and takes a seat. When she checks her phone, the rings on her hands catch the light. They’re purple—the color of fibromyalgia, the color of lupus awareness.
“I’m always in pain,” Grimes says. “People don’t really see it—they’re always like, ‘But you look so healthy!’ but they don’t feel what I feel.”
She smiles when she says this. It’s slight and sly: a hint at her own vulnerability.
A sign of strength.
Grimes spent her childhood on soccer fields and running tracks. With her father as a coach and her brother as friendly competition, she thrived as a proud tomboy.
After losing an academic scholarship to the University of Arizona (a result of being “17, young and dumb,” according to Grimes), a counselor called and suggested she join the reserves.
Grimes enlisted as a combat medic two years later.
She returned to UofA, finished basic training, and graduated with a degree in interdisciplinary studies as well as three minors—sociology, speech and hearing, and health education.
“After all that, they placed me in engineering,” Grimes says. “There weren’t a lot of black female engineers at the time.”
By 2002, she found herself stationed in South Korea as a company commander, floating down the Han river in camouflaged boats. Distanced from other companies and responsible for 250 soldiers, Grimes had to lead her team by herself.
She recalls sending detailed letters home to soldiers’ families about where they were and what they were doing. It wasn’t the most exciting thing, but it helped alleviate their worries.
Grimes soon realized that it meant the world to those back in the States. When Christmas rolled around, she received letters and cookies from grateful moms. One even sent her a music box.
At the same time, there was worry. Grimes was around brilliant engineers with no engineering background herself, and she had been passed over for command due to inexperience.
“I overcompensated,” Grimes says. In addition to leading, she studied engineering for hours a day.
One day, she got a call. Amidst tears of joy, she learned that she had been nominated for the General Douglas MacArthur Leadership Award. Grimes would later win second place, and her company would go on to win their share of awards.
Then came the diagnosis.
Grimes’ lungs collapsed in 2007. A year later, she had stage three and five kidney disease. She developed fibromyalgia the year after that. Lupus affected her memory and balance. She experienced her worst flare in 2010.
She was medically retired February 2011. Her whole military career spanned 19 years, two months and 29 days.
There was a stretch of time when Grimes was in and out of hospitals. Her mother was by her side, speaking to doctors when Grimes herself was too weak to respond.
“My mom was the best advocate during the worst times,” Grimes said.
Grimes’ boyfriend, Michael Zachery, was also there while she was hospitalized. As she bobbed in and out of consciousness, he slept on the hard, scratchy hospital furniture and kept watch.
Lupus wasn’t unfamiliar to Zachery. His own sister, Phyllis, was diagnosed with lupus when she was a year old. The two were extremely close—almost like twins. She passed away from sickle cell complications in 2012.
He met Grimes in Dallas. She was confident, talkative and slightly aggressive, but also caring.
“I kind of gravitate towards that,” he said. “I wanted to know more.”
Three weeks into their relationship, Grimes was critically hospitalized. That was when Zachery found out she had lupus.
They moved to Arizona, and Zachery became a Le Cordon Bleu trained chef with his own catering business. Grimes dove headfirst into advocacy work, helping others so much that she sometimes forgot herself in the process.
There were times she didn’t eat, didn’t sleep—and Zachery developed an intuition that alerted him when Grimes was reaching her limit.
“The way my sister explained it to me, it was because she didn’t know how much time she had left. She didn’t want to waste a minute of it,” Zachery said. “But being driven like that, you’re going to run out of gas. Pump your breaks. Hold back. Give something back to yourself or you’re going to make your body shut down.”
But in the span of their six-year relationship, he never viewed her condition with gloom. It was just something she dealt with.
He was there to support her when she first started AZ Lupus Warriors, and was in awe of the way she handled everyone’s emotions.
“I’m not good with the emotional stories—that puts weight on me,” Zachery said. “But I don’t think she internalizes it in that matter. She’s a helper. If you’re not getting that support or help, she’ll bring you to the right place.”
For one individual, Grimes’ willingness to help couldn’t go unnoticed.
That’s who nominated Grimes for the AZ Veterans Hall of Fame.
Gabriel ‘Gabe’ Forsberg, who has retired from the Department of Veteran’s Services, has been in charge of helping homeless women veterans since 2009. Grimes approached Forsberg and asked how she could help.
“She didn’t know how, didn’t know [in] what capacity, but she offered herself to me,” Forsberg says. “She’s able to work with women of all levels and really pull those walls down.”
In January 2018 at Maricopa County StandDown, an annual event for donating goods to homeless veterans, a woman from the streets came in. She was aggressive, confused and unwilling to depart from the belongings in her power chair.
“She was H3, and H3 vets are at the risk of death,” Forsberg says. “She was having a psychotic episode, and the only person who was able to help her out of hundreds was Toni Grimes.”
Grimes went up to her and made conversation, the beginning motions of the ebb and flow of trust. Hours later, long after Forsberg went home, Grimes was still working with the woman, eventually getting her cleaned up and in new clothes.
At this point of the interview, Forsberg chokes up and apologizes.
“I’m kind of weeping. I admire her so much. She’s done a lot of work with PTSD, military sexual trauma survivors…she’s just a good, kind person.”
When Forsberg’s own friend was diagnosed with lupus, she immediately got her in touch with Grimes.
“Toni has planted a lot of seeds, and all of the people who have seen this incredible kindness has paid it forward,” Forsberg says. “She doesn’t think it’s any big deal, but she’s changing lives in every little corner of her world. She’s my hero.”
Aitana Yvette Mallari
Writer
@aitanamallari
Aitana Yvette Mallari is an online media journalist who runs on caffeine and WiFi. She’s lived in the Middle East, Asia, and both coasts of the US and writes about health, tech, and amazing people doing amazing things. She is a graduate of the Walter Cronkite School of Journalism and Mass Communication and probably has a deadline to get to.
Read more by Aitana Mallari.
Loren Worthington
Editor / Photographer
@rollingphotog
Loren Worthington is Ability360’s Marketing and Communications Manager and Publisher of LivAbility Magazine. He has an extensive portfolio of work as a videographer and photographer with an emphasis on sports photography. He was an official photographer for TeamUSA at the Summer Games in Rio. You’ve seen his work in numerous Arizona-based outlets and nationally in New Mobility Magazine and Sports N Spokes.
Read more by Loren Worthington.