Living with a chronic disease means choosing one of two paths. Like picking your route in a twisted “Choose Your Own Adventure” novel. Symptoms such as daily pain, muscle weakness, rigidity or spasms, incontinence, breathing difficulties, or loss of independence, can be overwhelming. There are undoubtedly days when the easier response is closing the blinds, muting the phone, and curling up in the fetal position on the bed. But Mike Neufeldt couldn’t live that life. And he had one of the worst types of chronic diseases: Emery-Dreifuss muscular dystrophy.
Muscular dystrophy is a group of diseases that cause progressive weakness and loss of muscle mass. Abnormal genes (mutations) interfere with the production of proteins needed to form healthy muscle. Symptoms of the most common variety begin in childhood, primarily in boys. Other types don’t surface until adulthood. There is no cure for muscular dystrophy, but medications and therapy help manage symptoms and slow the course of the disease.
I first met Mike (called Mikey by many, including Michael Jordan and President Reagan) at what was then WITI-TV6, the Milwaukee, WI FOX affiliate station. I was 14 years old, roaming the television studio atrium, newsroom, outdoors and even the studios themselves, as if I worked there. Thanks to the power of the Rotary Club member list and my charming request to be an intern, the news director brought me in to help with the local broadcast of the Muscular Dystrophy Association (MDA)’s Labor Day telethon with Jerry Lewis.
It was just after the first segment was completed and the lights in the atrium were lowered a bit (the broadcast took place there and not in the news studios, because so much space was required by rows of volunteers and attending guests). Jerry Lewis was on the monitors and the sports guy, Tom Pipines, thanked Mike for doing a great job, along with two family members. The four of them were chatting, as a TV6 News producer walked me over. I swear, Mike was only a few years older than I, but he had this vibe about him that said he was a pro at this–and he was quite comfortable in that role. He smiled, asked who I was and where I was from. I told him Chris, from Milwaukee, and I was working to become a broadcast journalist. Not a TV news reporter, not an anchor–a broadcast journalist.
As I was explaining my story while Mike listened, two more people came up behind him. It was clear that Mike had more hands to shake and babies to kiss, so I let him be and went outside to hand out t-shirts to viewers stopping by to make donations. Hours went by as I came in and out of the atrium, and almost every time I did, I saw Mike somewhere, talking to someone.
As the day wound down, I was carrying a box of TV6 MDA t-shirts into the station, when I ran into Mike on his way out. I still remember what he said to me, which is saying something, because I don’t remember much else about being 14. “You’re like me. You’re going to work here before you know it. I’ll see you next year.”
Mike Neufeldt died Tuesday, March 17th, from complications related to his disease. I know Mike’s tragic passing affects an enormous amount of people. I think his life impacted equally as many, including this blogger.