his Life

About John's Life, by Doris, his Mom

 

As John's mother, I felt I needed to fill in a bit more about John's life and the world he lived in. My own world has changed from a beautiful kaleidoscope of color to a world of blacks and grays. One I cannot describe, one I cannot speak about. It is also difficult to write about John's life, but his friends deserve to know. And I wanted to tell my own friends a little more about John, and the troubled life he had to live.

His problems began with the Lyme Disease he had to deal with for most of his life--since he was around 10 or 11 years old. If he had had proper treatment at the time, it could have been over and done with in a short time. But that was just about the time the world was introduced to this strange disease, before most medical professionals even considered it as part of a differential diagnosis. John's joints began swelling, especially his knee. So he was diagnosed with Juvenal Rheumatoid Arthritis (JRA). He was treated with all sorts of injections of heavy-duty drugs. Often he had to have the extra synovial fluid removed from his knee, and steroids injected. He often had to attend school on crutches. If he told people he had arthritis, they would laugh and tell him that only old people had arthritis. He would have been a hero if he had suffered an injury during a soccer game--but he could never even participate in sports because of his infirmity.

Since I have always worked in a laboratory, I had saved blood (serum) and synovial fluid samples from John from the first day of his illness, and had them stored in the deep-freeze of the laboratory where I was working. So about 10 years later when I became suspicious that John really had Lyme Disease--and not JRA--I contacted a specialist in Connecticut and had his early samples tested---and they were all positive. All from Day One. The doctor I talked to was most sympathetic, and suggested a month-long antibiotic treatment at that time, which we did, with not much relief.

Still later, as John continued to have even more symptoms throughout his body--painful joints, headaches, extreme and debilitating fatigue, trouble concentrating (just to name a few)--I drove him to NY to see another doctor, a neurologist who specialized in Lyme. After a spinal tap and other tests, it was confirmed that the organism (Borelia burgdorferi) had penetrated the central nervous system--the brain. John was then subjected to another round of IV antibiotics--and still with very little success. One day John would seem to function normally--the next day he hardly had the energy to walk to the shower.

Still later, around 2000, I got John into a study at the NIH (National Institutes of Health), where I was working at the time. Again, after testing all they knew to test, he was again prescribed two months of IV antibiotics, and still again, with no relief. NIH is probably the most prestigious research center in the country, but they released John from the study, admitting they didn't know what else to do. It seems there are obviously other factors aside from the Borelia organism itself that causes all these late symptoms, perhaps some sort of autoimmuniy that most doctors don't understand.

As a teenager, John began trying to self-medicate with drugs. Of course that didn't work, and was taking him down the wrong path, so he just stopped, on his own. Cold turkey. No problem. Later, as a young 20-something, he tried alcohol--and that didn't work. But he soon learned he needed help to get off the alcohol. He did get help, and became a T-totaler, and began trying to help others who had problems with alcohol. I remember one particular event when his sister, Jenny, had rented a chalet in the Shenandoah Mountains for our family on a Thanksgiving weekend. We all had just arrived and were admiring the beautiful views when John got a call from a friend--another friend had blacked out from too much alcohol, and John left to help out, missing out completely on our family Thanksgiving.

"Why can't they just call 911?" I asked, in my total ignorance.

He told me they would just throw the kid in jail after he recovered, and when he got out he would lose his job, and his life would be even more ruined. John also had EMT training, which often helped in such situations. So John helped save lives, but also went to too many unnecessary funerals. I have heard many sad stories about friends John met along the way.

But back to John's Lyme Disease, and how it affected his life. After we had exhausted all the help--or non-help--from the medical profession for his Lyme Disease, John began to look for alternative remedies, and even became a shaman. To me, he was a walking encyclopedia of herbal medicine. But still he found no relief.

Chronic Lyme Disease has been called the invisible disease, because people with it can look so normal while their bodies are being ravaged all over inside and hurting and begging for relief. As one of John's friends put it, you just don't "get it" until you get it. So you learn not to talk a lot about it to your friends, because you sense that they don't believe you. And I felt the same way if I talked about it--just another mother making excuses for her son--so I didn't talk much about it either. But I saw it. Firsthand.

Throughout all these hardships, John was also on a spiritual journey, which he had been on for most of his life. He learned to meditate when he was a teenager, and kept exploring different spiritual paths of the eastern religions, spiritual gurus and mystics. He used whatever worked for him at the time. I learned a lot from him myself, but he always could express it much better than I could, so I really enjoyed the deep conversations we often had. .

It is always difficult for Lyme patients to work at a full time, 9-to-5 job, because on some days the pain and fatigue and mental challenges prevent their giving full attention to the job, if they muster enough energy to get to the job at all. So John tried to steer himself into jobs where he could set his own schedule. He was very successful in real estate for a while, until the bottom dropped out of the market. He had graduated from an electronics school, and was a whiz on computers, so at that point he tried a couple of computer jobs; but after the long commute to work when gasoline was near $4/gallon, he was barely getting by financially, his health was going downhill, and he was suffering not only physically, but mentally and emotionally as well. Perhaps the cruelest part is that Lyme patients are often called hypochondriacs, or told it is all in their head. But I know different. I know that John was seldom without pain. All over.

Finally John became interested in visual arts, and formed his own business on a shoestring, "Suntiger Visuals," exploring and teaching himself along the way, and buying new equipment when he could afford it. He began booking with several musical groups and different sites and festivals around the area, and seemed to be making a name for himself. He used fractals and a lot of sacred geometric patterns from nature in his creations. John always has been creative, so he really enjoyed doing this.

But this work, too, had its downside. He usually had to drive a couple hours to get to the sites, then set up the stage, do his show until midnight or later, then take down the stage setup, and finally drive two hours to get back to his home in West Virginia. He was completely exhausted after every show, and it took him days to recover. If he had back-to-back shows or festivals, he would almost completely collapse.

John had so much to give the world! But I think he was worn out, physically, mentally, emotionally, and also financially. It seems the most creative and talented musicians and artists make the least money, struggling as did the Impressionist Artists of the 19th Century. He said to me recently that he didn't think he could continue with this much longer. It was really taking its toll.

He began stopping over with me (in Maryland) for the rest of the nIght when he had a show in Baltimore, instead of driving all the way home. He would arrive around 2:00 or 3:00 a.m., have something to eat and try to unwind, then take a couple of Ibuprofen and go to bed, usually listening to some meditation or lecture by Alan Watts or Ram Dass or some other spiritual guru or mystic. He would sleep until around 11 the next day, have coffee, and then either breakfast or lunch with me--whichever he felt most like eating.

He was here after his Winter Soltice show with Telesma, just before Christmas. We sat on the couch together at 2:30 in the morning eating Graham Crackers and drinking milk. Then he said, "OK, I have to get some sleep now, I'm running down." I told him the next day as he was packing up to leave, "John, I don't know how long you can keep doing this."

I still remember his sad eyes as he looked up at me and said, "I don't have a choice."

I had my Thanksgiving with John and Sara last year (2016) at their house. John loved cooking, and was a good cook. When I suggested that I was thinking of making a Manchurian-glazed turkey that I could bring, John joked, "Yeah. Mom. That sounds like a real Native American dish!" So John cooked the turkey. But I did make him his favorite pie to bring for Thanksgiving--coconut cream. We always joked back and forth when we were with each other. Sara remarked that it always cracked her up to see us together.

Our last Christmas (2016) was at my house--just the two of us. We enjoyed our meal, and just being together. He actually seemed to enjoy just being with me. But I could tell he was so tired--he fell asleep on my couch as I cleared the table. Christmas was the last time I saw John. And as I mentioned elsewhere, his last words to me that day were, "I love you, Mamma." There was never any question about the profound love we had for each other.

He called again the week before he died, just to check on me. I asked if he had any shows booked, and he said no, that he was just resting up while he had the chance. He sounded calm, not worried, as he often did when we talked. And our last words to each other, as usual, were "I love you."

I have thought a lot about that call since he died. It almost seemed as if he wanted to be sure I was all right before he left this world. I will never know. If I have any consolation at all now, it is to know that he has no more pain, physically, mentally, or emotionally. And at last he is at peace. His organs were donated, so I hope in this way that maybe he saved yet another life with the loss of his. 

(Check out this link to read about what havoc Chronic Lyme Disease can cause when it crosses into the brain, as in John's case. http://www.igenex.com/psychological_effects.htm )