I’m not sure how many people come by here lately. I just wanted to inform any fans what I’ve been up to, as I haven’t been keeping everything updated nearly as much as I’ve been wanting to. In fact, many a musical goal and dream, and my life in general, has been cut short this year due to one unfortunate factor: Chronic Lyme disease. I was diagnosed in February of this year, after seeing about six doctors who shrugged me off.
If you’re anything like me before I caught it myself, you don’t know much about Lyme disease. You probably know that it’s a tick-borne disease, and can be mild to semi-serious. What you didn’t probably know, as I didn’t, is that in some individuals Lyme can be completely debilitating. It can become chronic, recruit co-infections, latch on to the brain and other susceptible tissues, and incapacitate people. Since starting to notice symptoms a year ago, my world has become quite an uncomfortable place. I’ve learned more about this insidious disease than I ever wanted to. I’ve been forced to leave jobs, time spent working on music has been cut in half, I lost my studio and life in New York this month to be under the wing of family, and most of my time has become managing insurance, trying a to find a doctor with some answers, and reaching out to the thousands of sufferers worldwide who share my confusing plight. So far, the emerging problems have outnumbered the solutions.
Many think ‘aches and pains’ when it comes to Lyme symptoms. I actually had very few of those symptoms. For a quick rundown, let me just explain what my symptoms entail day to day at this point. I often get responses like “well, we’re getting older” or “it might be allergies” when I mention my Lyme infection to folks, even family members, so let me just paint a more detailed picture. I wake up with the hangover from hell every morning. It feels like my brain has been out partying without me. The first thing I notice is strange sounds in my ears. I have ever-present tinnitus since I got Lyme, extremely scary being a musician. Frequently one ear or the other will go completely deaf temporarily, even scarier. Sometimes the noises become louder and sound like a fire burning at close range – imagine having a washing machine strapped to your head. At times I get strange tickles and pressure in my ears as well. Headache and meningitis-like neck soreness is an ever-present reality – the headaches range from mild to incapacitating. My mind takes a couple hours to start working at all in the morning. I experience dizziness and vision problems as I wake up and walk around, trying to feel semi-normal. The fatigue is overwhelming and constant. Many brain processes that I used to take for granted have started to require extreme focus, as neurological Lyme affects the brain’s higher functioning processes. Reading, for example, has become a difficult chore. My memory has become all but useless. Last week, for example, I bought some tea at the grocer, paid for it, and two hours later realized I had left it on the counter at the store. I experience frequent muscle spasms. Every fifteen minutes or so, a part of an arm or leg just starts twitching wildly, which gets quite annoying. My perception of reality has become very weird – with the vision, hearing, and balance problems, I feel like a 90-year old man. My voice control and vocal tone has changed. There are other digestive, lymphatic, and sexual symptoms which I will spare you the details of. At night, I get some relief from the persistent brain fog. It lifts for a few hours, but then comes the insomnia. A common symptom for neuro Lyme is difficulty sleeping – and I was already an insomniac. Now it takes me hours to fall asleep, to a world of vivid nightmares.
I know these are gross and weird to hear about. Let me just remind you: I’m 31 years old. I’m not a health nut by any means, but I did take my health seriously. I exercised on the regular, I was at least aware of what I ate, and I was never a heavy binge drinker or anything. From one lousy tick bite, my life has changed, and my dreams of making great music have all seemed to be called into question. I’m at the peak of my game, with 33 new solo tracks half-recorded, for example (which I think may be my best songs yet!). I was just starting my professional career, I had just “made it” in life and music, and I was finally feeling like things would be achievable. I desperately wish I had my energy and mind back again – I hunger and ache to be marketing my bands’ new releases and finishing some of the best work of my life. It is extremely, overwhelmingly frustrating.
But something is even more disconcerting than the Lyme itself: the surprising lack of awareness or sympathy in our society, the bizarre lack of answers from our modern medical system, the hundreds of sufferers I’ve met from all walks of life, and the unusual conspiracy involving Lyme denialism within the US insurance and pharmaceutical industries.
It’s easy to pass off uncomfortable health issues in our minds when we run across them. Life is hard enough, and I’ve been there too – we think, ‘oh, this person was unhealthy’, or ‘this person is exaggerating’, or, ‘if I was bitten by a tick I would remove it before there was any issue’, etc. We tend to justify things in our minds.
But this disease affects an incredible amount of young people. Healthy, physically active people with few prior health issues. This year alone, 300,000 – 400,000 cases – that’s right – have been reported, and seeing what I’ve seen of the stigmatization of this disease, it’s certainly an underestimate. And it turns out that many of the signs for Lyme, such as the ring around the tick bite, are exaggerated (for example, I didn’t have the ring; in as many as 50% of Lyme cases there is no ring present).
I’ve seen teen girls in wheelchairs, denied any immediate hope. I’ve seen families of suffers, losing jobs, losing marriages. I’ve seen creative musicians, heard heartbreaking accounts from professional writers, so many people just falling down without any support. My own family seems a bit confused by the whole thing, and hasn’t yet realized that life has changed drastically for me. Talking to many victims of the disease, that seems to be the hardest part for everyone: this strange denial of help and empathy from people we love when we need it the most.
In a world obsessed with Ebola, and ALS, and H1N1, it’s even more strange to see this insidious disease go mostly ignored in the public eye. Lyme represents a very real epidemic happening right under our noses, at this very moment. This is exactly why I’ve always been an advocate for science: these are the kinds of problems that should be learning opportunities for our species, but instead we choose to look the other way. The stigmatization of Lyme represents a humanitarian blemish on the history of American medicine.
I’ve tried to be as positive as I can. I start each day with meditation, trying to envision health and get myself in a positive state. I’ve tried to continue as normal where I can. But…. so many little issues branch out from this thing. Its rough as hell, I’m not kidding. It may have become a little more awkward in our internet culture to speak honestly about the negative things in life: but this is where I’m at right now.
Ok. This blog post isn’t exactly well-edited or put together – I just kind of did a stream-of-consciousness. There are so many points I wish I could write about in depth a little more. But writing is tiring. Let me just throw a few links your way if you’re interested in having your mind blown – an epidemic exists right below the surface of our society, and isn’t being handled at all. And if you have any advice or experience with Lyme, please, I’m looking for all the help I can get. I want to get back on my feet and start making music again!