Mutant University w/Gabe Moen - Ball State Sigma Phi Epsilon
Sound Body training
It wasn’t fast, but rather gradual. It wasn’t expected, but rather surprising. It wasn’t the worst thing that happened, but rather life changing.
During a typical day one can find Jeremy Poincenot enjoying the company of his friends or training for his next physical feat. Poincenot is like any other San Diego State student, attending classes and enjoying a busy social life; only there is one key difference: He can’t see what he is doing.
The last few years of the 20-year-old’s life have been nothing short of rough — filled with multiple misdiagnoses, physically grueling medical treatments and, ultimately, a profound acceptance for a new lifestyle. The international business junior suffers from a rare, incurable, mitochondrial disease known as Leber’s hereditary optic neuropathy — and it has left him legally blind.
“After my vision went blurry after my 19th birthday in October, we went to see an optometrist,” Poincenot said. “I spent Christmas break of 2008 in and out of hospitals.” The optometrist he visited had thought Poincenot was suffering from a brain tumor, which an MRI confirmed negative. He was then misdiagnosed with Neuromyelitis optica — a disease that would have left him completely blind and in a wheelchair.
“I spent Christmas (break) in a hospital bed for 10 days,” Poincenot said. “I would sit there for four to six hours a day while there were tubes connected to my neck — I could see the blood in my system come in and out.”
The plasma treatment that intended to bring back his eyesight didn’t help. And through his three-month stretch from October to January, his vision drifted slowly from a perfect 20 / 20 to a legally blind 20 / 3,000.
In January of last year, after many misdiagnoses and several unneeded treatments, Poincenot visited a specialist at the UC Los Angeles’ Jules Stein Eye Institute, where he was confirmed to have LHON. The disease is so rare that the specialist had only seen five confirmed cases in his life.
“The specialist gave me a pep talk and made me understand that this was something that I can live with,” Poincenot said. “And it made me feel a lot better.”
But perhaps what was one of the biggest blessings in this traumatic time was the introduction to Dr. Alfredo Sadun at the University of Southern California’s Doheny Eye Institute. Sadun’s specialty is in LHON, and it was this aspect that comforted Poincenot the most.
“He wanted to check with me once every four months to see if my condition was improving or not,” Poincenot said.
Unfortunately his vision did not improve, but it did stabilize. His eyesight today can be compared to the shape of a large donut; there is a large black hole in his central vision while his surrounding vision is still fairly intact.
And while his vision has reached a level of legal blindness, his outlook on life has reached a level he had never imagined.
“Before I lost my vision I was a pretty lazy kid and all I wanted to do was enjoy life,” Poincenot said. “But now I have become so much more proactive and do so many other things, I feel like I am leading more of a purpose-driven life than I was even close to before.”
And it’s true. Just within the last year he has completed his first half-marathon, rode in a bike race benefitting research for blindness and has taken up painting with his new girlfriend — who he met at the Rose Bowl last year during the SDSU football game against UCLA.
And although it takes strong character to raise spirits in times like these, Poincenot is quick to acknowledge the help he has had along the way.
“When I realized my vision was going to be lost forever I really wanted to drop out of school because I thought when people found out I was legally blind they would treat me differently,” he said. “Sigma Phi Epsilon was the reason I came back without a doubt.”
Poincenot credits his fraternity brothers with their undying support during his first few months of adjusting, especially his best friend Josh Brown.
“The semester I came back to SDSU, I only took two classes: TFM160 and Music151,” Poincenot said. “Josh (Brown) walked with me to and from class, he took the same two classes with me, took notes for me, helped me study and even interact with professors.”
This semester Poincenot is taking his first international business classes and emphasizing in French, but it hasn’t been easy. He takes his tests in the Testing Accommodations office, using a large 22-inch monitor that enlarges the words letter-by-letter until he can read the questions. Answering his cell phone and leaving Facebook comments is just as difficult, as he uses an electronic magnifier to increase letter size in the same fashion.
Many aspects of Poincenot’s life have changed, including basic tasks such as driving, reading or even seeing who is calling his name on campus, but he has still found an ability to continue doing something he has always loved.
“Every Sunday in middle and high school I would golf with my dad,” he said. “When I was in the hospital during that Christmas break he (his dad) bought me a new set of clubs which was a little weird to me because I didn’t think I would play again.”
But he was wrong. Poincenot and his father placed second in the Blind Golf Association’s state tournament and third in the national tournament.
“It’s a really emotional thing because it’s a great bonding experience for the two of us and he gets just as nervous as me if I hit a bad shot,” Poincenot said.
As the young man known to his friends as “J-Pot” learns to accept his new lifestyle, he has now set his goals toward finding a cure for LHON.
This semester the annual SDSU Greek Week and Sigma Phi Epsilon philanthropy will help raise money to reach Poincenot’s goal of $50,000 — all of which will directly fund LHON research.
While many believe that seeing is believing, Poincenot is a true testament that seeing isn’t needed to believe in oneself for a richer and fuller life — and if things really get bad, “it can always be worse,” Poincenot said.
Legally blind Jeremey Poincenot sets up a putt with the help of his father, Lionel Poincenot (left). - Ed Zieralski photo