IU alumnus affected by disorder prevails to race in triathalon

When Matt Hay was first diagnosed with a rare disorder called type two Neurofibromatosis 14 years ago, he said there was nothing life-changing about the particular moment. But now, he is able to look back and tell where it all began.

Despite undergoing two brain surgeries, five eye surgeries, a spine operation and having to relearn to walk twice, the IU alumnus completed the Ironman Triathlon in Sandusky, Ohio, on Sept. 11. 

“From an emotional standpoint, I try to live my life focusing on what I can do rather than what I cannot,” Hay said. “That has helped me a lot along the way. Even after a surgery when the doctors cannot say for sure if I will be able to walk, that doesn’t mean I can’t still hug my family.”

Type two Neurofibromatosis, commonly referred to as NF2, affects one in 40,000 people. NF2 causes benign tumors to grow on nerves located on the spine and brain, which impaired several of Hay’s motor skills, including walking, talking and auditory function.

Hay eventually lost total control of the left side of his face. Despite the daily hardships, Hay said he worked to persevere.

“Within a few months of surgery, I had improved to a point where I could walk slowly on my own,” Hay said. “I just wanted to keep getting better at it. The walking led to some running. The running led to eventually a marathon and that eventually led to an Ironman distance triathlon. It was my way of saying that I might have NF2, but I’m going to be the one that defines what I can and cannot do, not the disease.”

Under the circumstances, Hay had to learn how to communicate in spite of his condition.

Alongside his wife, Nora Lasbury Hay, he learned sign language and how to read lips through classroom instruction. Hay said, as with any foreign language, it was difficult to become proficient without practicing on a regular basis.

“I lost my hearing over the course of about 10 years,” Hay said. “While I don’t recommend losing your hearing, if you are going to do it, that is a good route to go.”

After the loss of his hearing, Hay had an auditory brainstem implant, or ABI, surgically
 implanted in 2004 to restore his hearing. 

“I do better than I ever expected with the aid of lip reading and the ‘robotic’ nature of the ABI sound,” Hay said. “I don’t really listen to music and rely on closed-captioning for watching TV, but there are so many great tools out there now like Skype and CapTel phones. I tell people it’s the best time in history to be deaf.”

The saying goes that ‘ignorance is bliss.’ Yet to Hay, ignorance was not an option. He said it was up to him to ask questions and educate himself on his condition to identify concerns and raise any questions he had with medical staff.

“Just because a hospital is close to you doesn’t mean the doctor there is the one that should be making all the decisions for your treatment,” Hay said. “I see a surgeon in Chicago, had my ABI implanted in Los Angeles and will be attending the Children’s Tumor Foundation forum in Minneapolis for a case review with surgeons from the Mayo Clinic and Mass General.”

Hay said the Foundation forum specifically geared toward NF2 will be a great opportunity to learn about several aspects of the disease including improvements in treatment and ways to make life easier. These include phone applications that identify certain theaters and entertainment venues that support a captioned format.

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By comic book standards, the superhero’s efforts are typically proven futile without the pledged loyalty of a sidekick, and Hay’s story is no exception. 

Enter Lasbury Hay, former classmate and now wife.

The two attended school together and graduated from IU in 1999. Hay even proposed to her in the Wells House.

“We’re a good team because we’ve been through more challenges than the average couple has,” Lasbury Hay said. “When we’re down, one of us picks up the other and for the most part it’s not a worry from day to day.”

Outreach and support toward the Hays was noted by family members.

“I feel that the support has been overwhelming for both of us, especially our friends around here (who) understand the extra time commitment,” Lasbury Hay said. “We’re speechless. On Facebook, text messages, people checking in — there were so many people cheering for us, hoping for us and praying for us.”

Hay engaged in a 36-week training program prior to his participation in Ironman. His most recent training plan started at about 12 hours per week during a span of six days and included increments of several 19-hour weeks as the big race drew near.

Training for a triathlon was not something Hay jumped right into on a whim. He now attributes his participation in such events, as well as past events he competed in, to his wife. 

“I imagined crossing the finish line every single day of training for 36 weeks,” Hay said. “Sometimes it was with my wife; sometimes she would be waiting, and I’d give her a sweaty hug.”

He also participated in an Olympic-distance triathlon in May, followed by a half Ironman triathlon in early July. Hay said competing in such events worked to instill confidence in his ability to successfully complete the Ironman itself, which consists of a 2.4-mile swim, a 112-mile bike ride and a 26.2-mile run.

“What I didn’t account for in those images was how tired and sore I’d actually be,” Hay said. “So when I really did cross the finish line, I was filled with a lot of emotion but (was) too spent to really process them all. I remember being relieved that the day went well for me, proud that I had ‘really’ done it, but also exhausted enough to think, ‘I’m going to really appreciate this tomorrow."