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.
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.
) My ears are ringing right now because there was some wheat in some meatloaf I ate. I had Brussels sprouts and a baked potato with nothing on it and a small piece of meatloaf. I saw oats and thought it was okay. Then I noticed soy flour and, oh boy, I'm lucky that I'm not worse off than I am. I have a big basket of supplements that I take and if I accidentally have wheat I have to take sulfur. If I accidentally take in too much sugar, like a sweet potato, I have to take chromium. We're always low on vitamin C. Everything we do, throughout the day, revolves around this.
"We" being anyone with Meniere's, right?
Yeah. There are people that can't research this, and my heart goes out to them, and honestly looking at a computer is kind of agonizing, I got this big computer screen because looking at tiny text makes your head feel like it's going to fall off. So I found an old TV on Craigslist and hooked up my computer up to a TV for days when I can't read. To this day I can't read tablets. You get in a state where your eyes move back and forth because your eyes think your body is moving because your brain is telling them that. But then you look at something stationary and you are stationary and everything you see is blurry and there aren't eyeglasses to correct that. So these people can't research. I'm just really, really stubborn. I'm obsessive and compulsive.
Sometimes being obsessive and compulsive can be a hindrance but in this specific case it's actually helping you to get through this.
Exactly. If you want to control it on the level I have controlled it, it takes every ounce of everything you've got all day long, all night long. You have to plan for it. Somebody wants to go to a restaurant with you and you have to think, "Oh, is there anything there I can eat." I was literally at Thanksgiving dinner with my family, because there's always some component with Meniere's that you forget if you don't have it, and they feel terrible when they forget. But it's complex. You don't have to pay attention just to proportions of magnesium, sodium and potassium, you have look at things like amines. I can make a steak that's just fine for me and makes me feel good today but I can put it in the refrigerator and have it tomorrow and that same steak will make me sick.
Amines are basically what occurs in food when it begins to break down. Amines flare the hell out of Meniere's. Fibromyalgia and things like that that are closely related, amines are cruel to all of those. Specific examples of amines that are pertinent to this are tyramines. Those are chemicals that appear in anything that's aged. Anything that ferments, marinates...wine. I can't do alcohol at all, or caffeine or ibuprofen. There are one or two medications I can still do. If I cut my finger off, I'd have to get Dilaudid because it's the only thing that doesn't screw with me.
I had this brain tumor in 2008 and irradiated it in 2010. I've had migraines since I was nine and I've got Meniere's, which apparently works off of migraines, so it's all related. I had a couple of abscesses and it turned out they got really swollen and it inflamed my trigeminal nerve and so I temporarily had trigeminal neuralgia. They weren't listening to me about the abscess and I was in the ER and they gave me seizure medication. That interacted with all of the other things going on. I heard it's common with seizure medication that it affects your cognitive abilities and your coordination. I had a friend who went on the same medication and couldn't remember how to use a door. For a while I forgot how to use instruments or how to use a computer. For four days I couldn't remember how to use my arms. Racquel had to drag me to the bathroom. I fell out of bed like a ragdoll and hit my head on the dresser.
A friend sent me a bass to help me learn how to play because I had to relearn how to play everything and I needed something big and dumb and clunky and forgiving. I sat with that and re-learned everything from scratch. One thing it did, which is scary for any musician, is that it affects your perception of pitch. You can play an E and the tuner tells you that but you hear a D or a C sharp. Then it's an E again. It's like you got a random tremolo bar. I would record a track one day and think I had a productive day. Then I'd wake up the next day and it's in five different keys. And it's the most atonal, awful piece of crap I've ever heard in my life. And not in any avant-garde kind of way--just unlistenable noise. You waste a lot of time. I worked on one song for about a year. What stayed on the song I only worked five hours on. You never have any idea if you're really finally finished. It's only a simple song but every part that you play is out of tune with the other part. It took a year for that affect to wears off.
Meniere's sounds like having a wide chorus pedal and a ring modulator on everything. Imagine what a whole band sounds like. But your whole world sounds like it's going through those pedals and you just aren't sure of pitch anymore. When my wife watches Saturday night live and there's a musical guest I have to leave the room because the amount of reverb from the live studio environment swims everything so terribly that I can't pick out what's going on anymore. I can't hear what's being said or played. I have to leave because it's frustrating.
It's gotten better and I've managed to reverse it and I have almost a hundred percent hearing in my right ear now. Some days it goes back to semi-horrible. Everybody doesn't sound like a Dalek most of the time. For a while that was the norm.
I wear sunglasses because the change in lighting can set me off spinning. You know when you go to a movie theater and go outside into the bright sun? It's like scorpions are applying eye drops to you. It's like that but worse, add a spinning factor. I now have to be sunglasses indoors guy and I fucking hate that but it's part of it. If you had a party with a bunch of people with Meniere's it would be a very boring party. One we would drink a lot of ice water and eat salad.
Don't turn the music too loud!
Yeah, exactly! And a lot of people probably talking too loud because they can't hear. And they'd all be wearing sunglasses if they know to do that. But yeah, visual stimulus hurts, sound hurts, moving too much makes you dizzy. I can't watch 3D movies anymore. Can't do action videos anymore. I can't track it. If it's old school like Donkey Kong or something like that, that's fine. But that stuff in the last twenty years. The damndest things drive you crazy and make you made and you know internally that you're an asshole because you're mad at things that other people love and you can't explain why they make you mad.
It changes your relationships. A lot of my friends used to be musicians. And a lot of them keep up with me and are very nice and extended kindness to me. When it comes down to it on paper every interaction you'll have with them is something that hurts. One of the weirdest things about Meniere's is that not only are you going deaf, you have Hyperacusis. There was a time when I couldn't take a shower without earplugs. I went through a period of questionable hygiene because of that.
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