For some, just one surgery can change a life forever. For Indianapolis native Sean Toth, surgeries are normal and frequent. The 51-year-old has had 346 surgeries in his life, many resulting from Type IV Hereditary Dysautonomia Neuropathy, a disease that affects his immune and central nervous systems.
“Left leg, right foot below the knee, right arm, cancer in my left hand, rotator cuff in my left arm,” Sean rattles off the list. “Basically all the surgeries were debridements (removal of damaged tissue), amputations and amputation revisions. I broke my nose at an early age, and my teeth never grew in right. I also don’t blink automatically like everyone else, so they sewed my eyelids together.”
While others may associate time in a hospital as a negative experience, Sean has only fond memories of time spent in his youth at Riley Children’s Hospital.
“Riley was never a struggle. I didn’t really feel sick. They kept me busy, and it was fun,” Sean said. “When you’re a kid, they drag you out of your room to interact with other kids. But when you’re an adult, it’s the exact opposite. You never see another patient, and it gets lonely.”
A hobby to keep busy at home
Sean finds joy in interacting with others, but he isn’t able to do it often. To keep himself busy, he spends his days digitizing VHS and Betamax tapes.
“It’s important work because there are not a lot of people doing it. Each tape is a treasure chest of the past,” Sean said.
While Sean stays busy digitizing tapes, he doesn’t see a penny for his labor. Still, he loves that his work allows him to communicate with others around the world who share the same passion.
“Texas, Brazil and even Japan,” Sean said. “It’s been great. I get to meet all these different people, and we just talk about techniques and what we find on tapes.”
Independence doesn’t mean he’s alone in his journey
Although Sean completes his digitizing work on his own, he requires help with other daily tasks. He frequently relies on his mom for aid, but he also benefits from CICOA services.
“I have an assistant who I’m so much in love with. She helps me with my computer stuff, and she goes to movies and concerts with me. She actually has a full-time job and comes here afterwards. That’s how close we are,” Sean said. “Then I have my nurse, who I’ve had for 22 years. She has kept me alive through the worst of it. She’s just wonderful.”
Sean credits CICOA as the primary reason he’s been able to remain at home and out of institutional care.
“We work really hard to keep me independent,” Sean said.
Thankfully, he hasn’t been to a hospital in awhile.
“My worst year was 1992. I spent 32 weeks in the hospital in ’92,” Sean said. “I’m going on my third year without being in the hospital.”
And he doesn’t plan on visiting again any time soon.
With your help, people with disabilities in Central Indiana can live independently at home and out of institutional care.