Musician Paul Jansen has Meniere's Disease, so playing is painful and he could become deaf
For several years, you could see Paul Jansen playing violin and guitar in various bands around Denver. First with the "folk Goth" band The December Question then more prominently with Jen Korte and indie pop outfit (die) Pilot. It was toward the end of his tenure with the latter that Jansen started to figure out he was suffering from Meniere's Disease, a rare disorder that almost always ends in deafness, with plenty of pain and extremes of discomfort along the way. However, Jansen, naturally inclined to analysis and determined to beat the odds, is willing to undergo Orthokine, an experimental treatment. It's been used by professional athletes Kobe Bryant and Dana White for joint and neck issues, respectively. Now he is raising funds through his Indie Go Go campaign (running through Monday, March 17) to make that treatment and associated expenses, not covered by health insurance, affordable.
Tom Murphy Paul Jansen
Born in Odessa, Texas, Jansen grew up in Monroe, Louisiana where he displayed an early childhood gift for playing music, first with piano and later with bass and guitar, and singing. After high school he moved to Los Angeles, Portland, Dallas and Baton Rouge before returning to Monroe for a number of years. Jansen played in clubs in both bands and as a sideman across a broad spectrum of musical styles including classical, jazz, blues, industrial and various kinds of rock. In 2000, Jansen had a chance to get a job in the Denver areas and he has been here since.
While recovering from treatment for cancer, Jansen discovered his Meniere's Disease and also discovered that people like Martin Luther and Van Gogh may have suffered from the same malady based on descriptions of their behavior and commentary on what ailed them.
There is thought to be a link between neck injuries, migraine headaches and Meniere's. Jansen suffered a major childhood neck injury at the age of two. The disease can often take decades to fully manifest, and its causes are complex and interlinking. Between food allergies and issues like excesses of various minerals and neck displacement, solutions to the problems of Meniere's have eluded conventional medical practice. The disease alters one's sense of space and orientation and motion.
It is not full-on hallucinations but rather a miscommunication between the brain and body, triggered for no readily apparent reason. Jansen spent two years narrowing down which specific items tend to lead to certain effects. Because he has identified triggers and researched treatments, Jansen now has a basketful of supplements to help certain treat symptoms.
Meniere's is a twisted roller coaster, but Jansen has managed to hold on to his sharp sense of humor and a surprisingly good attitude. The disease has given him periods of relative peace, but also periods he describes as feeling like "like [I haven't] slept in a few days." There are times when it makes it difficult to have the energy to do much more than homebound maintenance of symptoms. If Jansen raises more than enough money for his procedure, he will also buy the anti-viral drugs that treat what is believed to be the virus end of the disease and, if there are enough funds, help someone else get similar treatments.
We recently spoke with Jansen and asked him to describe what it's like for him dealing with Meniere's on a day-to-day basis and the labyrinth of symptoms he must juggle and treat and try to dodge unexpected triggers. With the treatment, Jansen hopes he's able to complete his next album on his timeline, not on the timeline of the disease.
Westword: What has been the response to your fundraising so far?
Paul Jansen: People have been really kind, I have to say. It's hard to be a curmudgeon when people are kind. Mike Marchant gave me his phone number and said to call him any time day or night because he knows what it's like to fight through something and everyone says they understand but they can't.
How has Meniere's affected you in terms of even the basics of making music?
I have an acoustic guitar with a mic built into it, and now I don't have to mic the damned thing. To mic a guitar, you need two ears for that. If you mic something it takes forever and by the time you're done, with Meniere's, you get fatigue a lot like somebody with Lupus. "Okay, I've worked for two hours, I'm ready for a six hour nap." So it's like, I've got my mic right, all of this is based on where I'm sitting at this precise moment in this chair exactly how I'm positioned, now I have to go take a nap. Well, I just wasted a day.
How did it affect you before you really knew you had Meniere's?
The end of (die) Pilot was a nightmare. You have this fatigue that's horrible. What it actually is, I recently read an article about the scientific reasons for it, is basically that you're tired because you're getting conflicting messages from your brain and your body all day long. One's telling you you're moving, the other is telling you that you're standing still. When your vestibular nerves, your cranial nerve eight, your balance nerve, isn't telling you the right information about what's up and what's down, you need your eyes to balance.
For example, if I were just walking in a room and someone suddenly turned off the lights where it's pitch dark I would immediately fall face down because you lose up and you lose down. You have to do that stuff all day long. You have to walk straight while the floor feels like it's moving. It's like isometric exercise all day long, it wears you out. Pick up a pencil and don't drop it all day long kind of stuff.
I didn't know I had this stuff when I was in (die) Pilot but I already did. I just knew I was tired all the time. I thought it was just being in a band and dealing with young musicians. Part of it was that but some of it was just my default was exhaustion all the time and I didn't understand why I didn't have the energy for this and a job. My favorite thing in the world is playing music live but I would dread the shows so much because I knew how tired I would get afterward. My ears would ring and I wouldn't know why. They would start ringing before we were done. I thought, "This is my favorite thing but now it's also the most terrible thing in the world to do." And I decided, "I can't do this, I don't have the energy or the strength, I'm dreading everything we do and that's not right." It wasn't fair to me or to other people. Music is something you're supposed to enjoy and it's supposed to work that way in putting that energy out to people.
So I stopped. Some people were understanding and some people were less understanding. There's so much of it you try to explain to people, so many components, and without feeling like professor dumb down you can't really ever get them there and you can't blame them. I used to read about Meniere's all the time and thought it sucks for people that get it. Then you get it and it's wow. it affects everything.
When I sleep at night, if I sleep on my left side, I'll have a whole different set of symptoms than if I sleep on my right side. I actually have to control how I sleep now. My diet? I don't look at menus in terms of, "Hm, that looks like it tastes good." I'm thinking, "Okay, that has that amount of potassium, that amount of magnesium and this amount of sodium. This contains soy so I can't have it. This contains wheat so if I have that I better do this." There's all these if-then tables that go into your head. It never can stop because it's exhausting. The minute I screw up, say I eat broccoli with a little soy sauce on it, raw healthy broccoli with soy sauce on it. Soy sauce, vertigo, I will be deaf for two days. Things will spin. Just from a tablespoon of soy sauce. Crazy shit like that.