Max Feinstein is a rock-and-roller and he looks the part with his wild and freely curling hair, tattooed arms, and electric guitar. In the past, people have even noticed track marks in his arm.
“There were times when track marks were looked at suspiciously. I have fewer of those now. I’m grateful that I don’t get that question so often, even though it’s still not ideal,” he said. “They see needles. They don’t see a doctor. They make their own conclusions.
The Union, New Jersey-based Feinstein, 33, is used to needles and his bandmates, too, have become accustomed to seeing him with them when they tour.
At the age of 1, after banging, splitting his lip on a coffee table, and being taken to emergency room because he wouldn’t stop bleeding, Feinstein was diagnosed with the bleeding disorder hemophilia A. After going public about his rare disease a few years ago in an interview, his musical life and his advocacy around hemophilia A have increasingly blended together. His 2022 album Redefine, influenced by 90s grunge and 70s rock is a personal exploration of living in a perpetual disease state. He also does work in the bleeding disorders community and has developed a music curriculum for people with these conditions.
Hemophilia A is a rare, lifelong condition in which the ability of a person’s blood to clot properly is impaired, leading to excessive bleeds and spontaneous bleeds into joints that can result in joint damage and chronic pain, and potentially impact quality of life. People with hemophilia A either lack or do not have enough of a clotting protein called factor VIII. The severity of hemophilia is determined by the level of clotting factor activity in a person’s blood, and there is a negative correlation between risk of bleeding and factor activity levels.
For someone who can be performing as many as 100 gigs a year, hemophilia A is not particularly conducive to a rock-and-roll lifestyle. Progressive damage to his elbow from bleeds has forced him to adopt unconventional ways of playing his guitar. At times, he has had to let it hang down to his knees to minimize bending his strumming arm. And once, while getting off-stage, he missed a step in the dim lighting and twisted his ankle. That caused a bleeding episode that made him unable to stand and forced him to let his band carry on without him. Ten years ago, a doctor advised him to give up playing because of his condition.
“I had wanted to write in a different way when I was younger. I wanted this to be a refuge from the condition. I wanted it to be a place where I could just go, ‘na, na, na,’ and not consider the condition because it felt, and to this day often feels, as though I am not a human being, but a disease piloting a sack of meat and you want to get away from that,” said Feinstein. “Guitar is a relatable thing. I felt if I can become half disease, half guitar, maybe I can connect with people in some way and not feel like I am treating people at arm’s length.”
Though his mother was a passionate advocate, his own advocacy work began unintentionally while attempting to get press coverage. In trying to convince a reporter to do a story, the reporter asked for a hook that would make it compelling. That’s when he went public with his hemophilia. When a hemophilia organization in New York read the article, it reach out to Feinstein, and that has drawn him into the advocacy world, lobbying on Capitol Hill and facilitating music programming for a bleeding disorders organization.
There are two things Feinstein tries to educate people about hemophilia. The first is that people with hemophilia are tougher than most people realize.
“We are not typically a fragile people,” he said. “Yes, we may bleed more often than another person. That doesn’t necessarily mean that we’re going to be built out of glass.”
He said there are people who think a paper cut can kill someone with hemopihlia A, but he bites his nails, shaves his beard, has cats, and gets tattoos. “I should be dead from some of that. And yet here I am defying logic,” he said.
The other thing he wants people to know is that someone with hemophilia can do everything to manage the condition and still find their precautions are not sufficient. A bleed itself is the great equalizer whether you have the best medical care in the world or live in a developing country.
“A bleed is a bleed when all of your protections fail you. And with the joint damage I have, there are some days where I can do curls with a 25-pound kettlebell, and there are other days where bending my elbow at all is a problem, or the musculature around the elbow is inflamed,” he said. “There are good days and there are bad days and it can be easy to judge a person on their good days or to not see their good days if they have more bad days than good.”
Photo: Max Feinstein
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