Jan. 8, 2022

Inspiration and Advocacy

Inspiration and Advocacy

By: Jean Lloyd

As a college sophomore, John Grimes (Texas Tech University, 2000) felt sick with what he thought was the flu. The next day, his Delt big brother Brad Smith (Texas Tech University, 2000) found Grimes unconscious on the floor in his apartment. Smith called 911 and Grimes was rushed to the hospital by ambulance. 

“When I got to the ER unconscious, I was presenting like somebody who was having some sort of a drug overdose. That wasn't the case at all, but that's what they thought,” Grimes said. “In the ER they finally did the spinal tap and discovered it was meningitis.” 

He spent 21 days in the hospital—seven in a coma, fighting bacterial meningitis, which is caused by meningococcal disease (Neisseria meningitidis bacterium). Bacterial meningitis can cause the tissues around the brain to swell and can be life threatening. Though rare, meningococcal disease can develop rapidly and claim a life in as little as one day. While antibiotic treatment is available, 10 to 15 percent of those infected will die because the disease is so rapid in its onset. Transmitted by respiratory droplets, the infection can start with symptoms that present similar to the common cold or flu. Anyone can get it, though teens and young adults are at increased risk due to adolescent behaviors including being in close contact. One in five survivors will have permanent disabilities such as hearing loss, blindness or amputation.

As a feeding tube and ventilator kept Grimes alive, his parents were told the outlook was grim—their son might not live or if he did, he might not have any [meaningful] cognitive function. Grimes credits his recovery to a higher power and the fortitude of his parents who pressed the hospital administration to assign a different doctor. Grimes began to improve, but his life had changed dramatically. 

“Once they understood it was meningitis, they could treat it correctly, but before they got that far, the swelling had gotten so bad in my cranium that they thought they were going to have to crack my head open to release the pressure. The pressure cut off circulation to my optic nerves and optic nerves are an extension of the brain—it's what connects the brain with the eyeball,” Grimes said. 

When he left the University Medical Center in Lubbock, Texas, in March 1998, he faced rehabilitation to learn basic life functions like sitting up, swallowing and standing. The most obvious change though is his loss of vision.

“I'm totally blind in one eye and have a 20/300 vision in the other eye and some other nerve damage,” he said. “I don’t need a cane or a guide dog. I appear normally sighted. I can see enough to be dangerous, but I can't see enough to drive. My vision is not correctable.”

Additional nerve damage means some areas of Grimes’ body don’t have sensation.

“The nerve that connects my brain with my bladder was disconnected or damaged, so since 1998 at the age of 19 I’ve been using a catheter for urination around four times a day. That coupled with normal college lifestyle and the vision change certainly made for some unique and challenging opportunities especially socially. When I went back to school in the fall, I didn’t have any friends who used a catheter, nor did I have any friends who were blind. There was a lot of relearning, a lot of exploration,” Grimes said.

When he returned to campus, Grimes lived with chapter brothers, Smith and Kevin Christian (Texas Tech University, 1999) who were instrumental in helping him navigate campus and the Fraternity helped him reconnect with friends. 

“Brad was pivotal because if he hadn’t come over that day, I would not have lived,” Grimes said. “Meningitis is fast-acting. I felt like I had the flu about 24 to 36 hours before I was admitted to the hospital. I took some medicine, went to bed and woke up seven days later. Without Brad, then that's where the story would have ended,” Grimes said. 

Having a strong support system in navigating a new reality proved invaluable.

“Finding all the new ways to do things, was the key. My family was a major support system as equivalent to my faith as a strong Christian. Then also, my friends who were at school with me,” Grimes said.

His return to college in August 1998 took immense energy and effort but with persistence he conquered new learning styles and graduated in five years total—including the six months of recovery at home. Grimes graduated on August 11, 2001—just one month before September 11, 2001. He began working with an insurance agent and two years later, when his father retired from a corporate insurance role, they opened an insurance agency together. Things like dating were also different for Grimes, but in 2009, he met his wife whom he married in 2011. And how they met?

“It was kind of a blind date, in more than one sense,” Grimes said of a connection made through his parents meeting other volunteers at a local food bank. Grimes and his wife have three daughters aged six, five and four. Grimes continues to face dark days but remembers to keep the correct mindset and keep pushing forward. In doing so he produces the podcast, “Ambiguously Blind,” the term he uses to describe himself. On the air he shares his experiences and connects with others to discuss thriving with visual impairment and overcoming life’s challenges.

“I’m ready to start talking about it now. I’m trying to do everything I can to talk about the experience, to talk about meningitis,” Grimes said. 

Along with his wife, Erin, Grimes has turned to advocacy volunteering with the National Meningitis Association (NMA). Since 2002, the NMA has worked to protect families from the potentially devastating effects of meningococcal disease by educating the public, medical professionals and others about the disease and its prevention. For the best protection, the Centers for Disease Control and Prevention (CDC) recommends a first dose of the MenACWY vaccine at ages 11-12 and a second dose at age 16. Parents should also talk with their teen’s doctor about the MenB vaccine. Though it wasn’t available to Grimes in the 1990s, the MenACWY vaccine was added to the recommended immunization schedule in the U.S. in 2005. Through this advocacy work in September 2021, Grimes joined Molly Ringwald the first national spokesperson for The 16 Vaccine campaign (an educational initiative launched in 2018 by NMA in collaboration with Sanofi Pasteur for the CDC-recommended second dose of the meningococcal meningitis vaccine) in a panel discussion. Ringwald, a mom of three kids and award-winning actor, singer and writer, is an advocate for meningitis prevention aiming to educate parents about the CDC-recommended second dose of the meningococcal meningitis vaccine. As a survivor, parent and advocate, Grimes said his goal is to help educate and inform as many people as he can about the fast-acting nature of meningococcal disease and the long-term effects on survivors and families. 

Talk to your doctor and visit nmaus.org and the16vaccine.org to learn more about meningococcal disease, a rare but potentially deadly bacterial infection that can present as meningococcal meningitis or meningococcemia. 

This article appears in the Winter 2022 Edition of Delta Tau Delta International Fraternity's alumni magazine, The Rainbow.


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