At some point in this process I’m going to have to write about my health, and since it’s heavily on my mind this morning, this might be the time.
Almost exactly two years ago I woke up with the feeling like I had a mild ear-ache. It was a light pressure in my head behind and inside of my right ear. If I put my hand right behind my ear, in the little space between the corner of my jaw and the little rounded part of my skull, I could almost point in to where the pressure sat. I was not really painful, just a pressure. Almost an intuitive sense that something wasn’t quite right in there.
I didn’t mention it to my wife for a couple of reasons. First, that I was scared. I can’t really even explain why, but I was scared. I go back and forth as to whether that fear was intuitive, alerting me to something that I needed to pay attention to and get examined, or whether it was a fear based more in my perception of the universe and the way things are. I’ll explain that later, but at the time I kept it to myself.
It was January 2006, and I was preparing for a trip to New Zealand. The band I was Tour Managing had a tour planned that would take us to New Zealand for ten days, performing at the New Zealand International Arts Festival. It was a big trip for everyone, and we’d been planning and preparing for it for nearly a year. I didn’t even want to think about the possibility that I might be sick, and maybe shouldn’t go, so I just ignored it.
At some point, after a few days of this feeling in my ear, I started to get mildly dizzy. At first it was sporadic. It might just come on for a few moments and then go away. It was better in the morning, and then would worsen during the day. It’s hard to even call it “dizziness” because, although that’s the best word for it, it wasn’t like what you’d think normal dizziness would be. It was more like champagne on the brain, like being ever-so-slightly drunk and out of balance, where you turn your head, and things take just a half-second too long to catch up with that motion. I didn’t say anything. I left for New Zealand.
All through that trip I kept it to myself, and never told the band. I was to busy and too frightened to deal with what was happening, and to figure out how to explain it to anyone else. Fear was growing inside me of the possibilities. For the band and crew that trip is remembered as one big happy party, with the wine and song flowing freely; of sold out audiences in a country we’d never visited before, of hearing the new album over the speakers in the Auckland airport when we arrived, and of drinking and dancing into the night after the shows. For me that trip is remembered as separation, of not drinking or partying because I knew that whatever was going on in my head, alcohol wasn’t likely to improve it.
When I returned from New Zealand, I had a resolved to tell my wife, and to face whatever that meant. It was now about a month since I’d first experienced the pressure in my ear, and the dizziness had grown to be nearly constant. I was convinced there was something seriously wrong, and I was terrified.
When I told my wife, lying in bed one night, I shared with her the whole story: when it had started, how it felt, why I had kept it quiet… We lay in bed and talked about the possibilities. She asked what I thought was wrong, I told her my fears were of a tumor. She asked what I planned to do, the next morning I called our doctor and scheduled an appointment. The doctor wasn’t sure, couldn’t say what he thought it might be, and didn’t appear terribly concerned. He referred me to a neurologist just to make sure.
I should mention at this point that my fear was not completely without context. For the year prior to this I had had some lymphatic problems, due mainly to a series of jobs I’d worked, and the things to which I’d been exposed. About three years prior to this I’d started working as a carpenter, and spent most of a year working on the restoration of a hundred-year-old church building, removing floor tiles that we were told weren’t Asbestos, only to find later that they were, knocking out walls and unleashing century old dust and God-knows-what into the air. I spent a good portion of that year underneath the church, in the dank, moldy twelve-inch crawl space, pushing two foot square concrete blocks into place to shore up the floor for the industrial restaurant equipment that was to come.
I went straight from this job to one as a production welder, building locomotives in a manufacturing plant. Working ten-hour shifts (and sometimes twelve), breathing the fumes and smoking too much because there didn’t seem to be any difference between the air on the production floor and the smoke from a cigarette.
I moved my family to Cincinnati when I realized this cycle of manual labor jobs was going nowhere, and took my first job in Ohio, as an estimator at a friend’s body shop. I managed the office and wrote estimates for the cars that came in. It was a cushy job, in a great environment, and was perfect for us at the time, but there was no ventilation in the small shop. The bondo dust from the sanding, the fumes from the paint booth, all the smells and chemicals and toxins went straight into the little six foot by ten foot office because there was nowhere else for them to go. I would vacuum the office once a week, and no matter how many times I ran over the carpet in that office, I would collect two inches of bondo dust in the bottom of the canister. It made me wonder what my lungs were full of.
After four months at the body shop, I began to notice that the glands on my neck were slightly swollen. Between the welding job and moving to Cincinnati, I had come down with a bad bout of bronchitis, and my glands had been swollen then. I assumed it was just some of the same illness that hadn’t yet worked its way out. I saw my doctor and he informed me that the body shop environment was poisoning me. I asked him for any input or advice and the only thing my Indian doctor said, in his clipped Hindi accent was “Get a new job.”
I delayed, because this was a good job, and for a friend. I didn’t want to switch, I didn’t have anything else lined up… and in the time I waited, the swollen gland on the right side of my neck grew to the size of a marble. When I took some extra days off around one weekend, I noticed that the longer I was away from the shop, the more the swelling subsided. When I went back to work, it came right back.
I was rescued by music. I had been doing side work as a carpenter for a couple with a band I was aware of. We often talked about my radio experience, and their touring life… After pouring concrete at their farm, or framing windows we would eat together and discuss their career. I was an outsider, not threatening, and was able to give some perspective that they needed. When their tour manager left to play bass in his own band, I offered my services, and so was able to leave the body shop, and hopefully get healthier.
It was approximately six months after this that I began to get dizzy. As I said, my fear had some context.
I went to see the neurologist. He asked a bunch of questions, I answered them and told him how afraid I was. He asked what I was afraid of, and I told him. He scheduled an MRI of my brain, and a bunch of blood work. I got the tests done, and while we waited for the results, my wife and I spent the next two nights lying in bed talking about what she and my son (then four years old) would do if I was gone. We cried together, and said the things that we should have been saying to each other ever day. We talked about the future, and hoped for the best, and all the while I was consumed with fear for the worst.
During the time I’d spent in New Zealand we had received emails that a friend of ours back in Cincinnati had been quite ill. He caught a cold that rapidly turned into pneumonia, and after just a couple of days he had been hospitalized. I only got snatches of information through the emails I received, but we caught the puzzled and frantic tone in the emails. One day he was sick, the next he was in the hospital and they thought it was going to be okay. The next it seemed they had misdiagnosed him and couldn’t figure what was wrong, and then next day he was dead. He was thirty-three years old, with two sons, ages five and three. He and his wife had only moved to Cincinnati a year ago, and now she was a widow with a big new house and two boys who couldn’t possibly understand what was going on.
It was only two weeks after his death that I went in for my MRI.
It can’t have been more than two or three days before we got the MRI results, but I does seem like at least a week. The Neurologist’s office called and scheduled an appointment to go over the results. I went in with my wife, trying to be prepared for the worst. The doctor stood in front of me as I sat on the examination table and said, “So, what were you afraid these tests would show?”
I laughed a bit in my nervousness and said, “I’m afraid I have a brain tumor.”
He laughed back and said, “Well, you don’t. So don’t be afraid.”
He went through the results with me, through every slide and every blood test, and showed how my levels looked good, how my brain was clear, except for two tiny spots that he couldn’t identify, and which he suspected were from some childhood trauma (I fell off a wall when I was two and cracked my head open). He said there was no “recent activity” that would cause him to believe there was a tumor, and the spots he saw weren’t even in the part of the brain that would relate to what I was experiencing. He didn’t know what was causing my dizziness, but he said as far as he was concerned it was not a tumor and there was no further need for me to see him.
I was relieved, to put it mildly. I felt pardoned. But I was still dizzy, and I still didn’t know why.
Over the next year, I saw different doctors. No-one seemed to know what was causing the dizziness, nor did they seem very concerned about it. I went back and forth between paralyzing fear and apathy. The dizziness reached a low-grade, constant plateau that never went away, and I got used to it.
I eventually stopped trying to figure it out. My fear was so great, and the buildup around any and every appointment caused so much turmoil that it just didn’t make any sense to come away with no answers. I began to just internalize it, and try not to talk about it. I didn’t tell people, I stopped talking with my wife about it. I tried to ignore it. But every day, all day, it was in my mind. It was the thing I thought about the most. And the fear was constantly there.
Fear is insidious. It steals the energy and life from inside you, and from those around you. It clouds every emotion, every experience, and dulls any sensation. For every hope, every vision, it has an answer and an antidote.
Throughout this time, I was on the road. I toured most of the time with the band. We would be gone for two weeks, then back for a week or so, then gone for three weeks and back for a month. We might have two months off, but then we’d be gone for three months, at three-week stretches with a week between each one. When we were working, I could avoid thinking about illness. I didn’t have to think about the future. But when I came home, it was there. I wasn’t making great money. We were on Medicaid, and renting a small one-bedroom apartment over a café. On the road we spent each night in a different city. We stayed in hotels and had people greeting us at each stop with welcome and appreciation. We didn’t live the high life, but we had fun and enjoyed our work. When I went home, there was poverty and illness. And they were both mine. Being home was hard.
I tried at one point to talk through some of my feelings with a friend. I’ve made reference in this story already to my fundamentalist upbringing and the effects it has on my though patterns. Possibly the greatest effect is that I look for the activity of God in everything. I look for life, and the hope that a personal, loving God would bring to the situation. If I believe (as I professed I did for so long) in a God who’s plan is for the redemption of his creation, then I should be able to see that at work, right? And if I have some kind of “relationship,” some kind of “communion” with that God, then that hope, and that redemption should be at work in me. Right?
And so I looked for that in myself. But I found something else. I found fear, and disappointment. I found a profound lack of faith in that God. And I discovered that I couldn’t see the future. I couldn’t look into the mist and envision a time when my son and I would walk together as adults, where the lessons I would teach him would become fully realized and where he would turn from being my son into being my friend. I couldn’t see him older, in college or even as a teenager. And all this because I didn’t actually believe I would be there to see it.
Somewhere along the way I picked up the notion that God teaches mainly through discipline and disappointment. In the stories of Job and through the Old Testament, God’s basically saying, “It’s my way or the highway.” There are the stories of God punishing people who disobey… even though sometimes it appeared they didn’t know the rules. There’s the story of Abraham and Isaac, where God tells Abraham to sacrifice his only son… Sure you can take it as a precursor to God’s own sacrifice of Jesus on the cross, the whole “God so loved the world that he gave his only begotten son” theme. But even there, the idea that in order for creation to be restored, for God’s redemptive purposes to be fulfilled for creation, that someone has to die? It may be the foundational belief of all western religion, but it doesn’t make any sense! In my years of Christian Education and Bible teaching, I may not have picked up a strong sense of the mercy or grace of God, or of his love or compassion, but I sure did pick up the idea of sacrifice. And so it was that when I got sick, I believed that this was part of The Plan. That God teaches primarily through disappointment and sacrifice, and what bigger disappointment and sacrifice than taking me away from my wife and my son?
This realization was shocking to me. I’ve always considered myself an optimist, a believer in people and things and the future and hope. It was crushing to realize that because I could not believe in a future, there might not be one. I was writing my own prophecy, telling my own story, and it was a depressing one with a quick and ignominious end. The only way I could see around this was a complete rejection, a repudiation of that way of thinking. By focusing on my fear I was giving it power, and the only way to end that cycle was to decide to live, again and again, over and over; to make the decision to believe in life and to pursue it.
I still don’t have a diagnosis. When I first went to my doctor in 2005, what I asked him for was a referral to an ear, nose and throat specialist, an E.N.T. Although I feared I had a brain tumor, what I actually wanted it to be was just an inner-ear infection that was upsetting my balance. My doctor went straight to the neurologist, and somewhere along the way we forgot about the E.N.T. option. But I’m thinking that might be the next step. While I was in Vermont for my first ADP cycle in January of 2008, I met a woman who mentioned that she had hearing loss and dizziness in one ear due to Meniere’s disease. She said it’s a chronic infection of the inner-ear which affects balance and hearing. I’ve since looked it up online and found that many of the symptoms coincide with mine. Another interesting discovery is that people have said that while it’s apparently incurable, they notice a drastic decline in the severity of symptoms if they avoid sugar of all types.
For the last six months, in an attempt to take control of my health, whatever the cause of the symptoms, I’ve been on a fairly strict diet, and have been exercising regularly. Over that time I estimate (because I didn’t weigh myself at the start) that I’ve lost about thirty-five pounds (I was around 225lb, I’m now 192), and have definitely increased my fitness. I stopped drinking alcohol and caffeine entirely, and have drastically reduced my sugar intake. I’m becoming more and more convinced that for many reasons I need to eliminate sugar entirely.
But I’m still a little dizzy. I’ve got used to it. It never goes away, but as long as I avoid sugar and other harmful things, it never gets really bad either. The swelling in my lymph glands has almost entirely disappeared, and in general I feel better than I have for quite some time. I’m running about 5 miles, three times a week, and considering entering some runs around Cincinnati this year. But somehow, as a part of this whole process, I’ve become incredibly chemically sensitized. Early on, I thought maybe the dizziness was related to mold in the building I was working out of. But when I moved out, it didn’t go away. Then I thought it was the building we were living in, but when we moved from there, it didn’t go away. What I have learned is that I am incredibly sensitive to any environmental irritant or toxin. If there is mold in the building, I’ll feel it. If there are solvents, or VOC’s or any kind of toxic compound, I’ll feel it.
Last week my friend Kevin offered me a job back at the body shop where I worked two years ago. The shop has moved to a new location, with more space, a different layout, and better ventilation. We both thought it might be different. The job he offered was absolutely perfect for my life right now. Apparently he called a temp agency and asked to hire someone to answer phones and help manage his office. The temp agency wanted eighteen dollars an hour. He offered me just less than that to answer phones, do a little estimating when it gets busy, keep the records up to date, pay the bills and manage a little bit of the accounting. Ten to forty hours a week, as much or as little as I want, with total flexibility, the ability to take time off for school or other reasons when I need, and no expectation for how long I’d be there. Oh, and as long as the shop is running well and everything’s in order, he welcomed me doing other work while I was there, whether school work or other side jobs I’m doing, like writing articles or doing band management work. Perfect.
I spent three hours there yesterday morning, and could already feel the dizziness and the swelling in my neck returning. I was sick at heart. This morning I called and let him know that I just can’t do it. I’m still too sensitive to the chemicals. I told my wife that I’m the canary in the coalmine. I don’t want to be, but I am. So, I turned down the only offer of steady work that I have. I had no choice. And it’s for that reason that I’m sitting here this morning, ruminating over the past two years, and the ongoing state of my health.
I still don’t know what’s going on in there. I have no diagnosis. Most days it’s healthier for me mentally to ignore it and just get on with living, than it is to focus on the uncertainty and feed my fear. I do need to get in to an E.N.T. and get some answers. It might not hurt as well to get another MRI done. Things can change over two years. But the most important thing right now is to be present with my son and with my wife. That’s true regardless of any prognosis. If I am sick, even if I’m dangerously ill, I want every moment to be spent in the present, not worrying about a future I can’t see, or living wrapped in my fear of the unknown. The future will work itself out. The present is what matters. At this moment, my son is six years old. He learns more every day than I could have imagined. He lost his first tooth last month. He read his first sentence last week, “Dots, dots, and more dots,” sounding it out letter by letter until he got the whole meaning. It was beautiful. He is beautiful.
My wife and I are learning more about ourselves and our spiritual journey than ever before. Through the writings of Rumi, Deepak Chopra, Robert Pirsig, Eckhart Tolle, Annie Dillard, David Whyte, David Chilton Pearce, Paramhansa Yoganada, Joseph Campbell and many others we’re freeing ourselves from the constraints of religion and beginning for the first time to become people of spirit and life. It’s exciting and it’s freeing. And there is no time or place in this journey for fear. I have no regular job. I spend my time studying, writing articles and ghostwriting for friends and colleagues, managing, consulting and booking bands, and producing records for musicians I know and respect. And that’s just what I did yesterday. Who knows what today will bring.