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Pain Connection welcomes articles, poems and drawings from members and families to provide an insight into their lives


by John B. Mannes

When I was 16 years old, I walked into a gift store and saw something that immediately caught my attention. It looked familiar, yet kind of "weird". I went over to where it was placed and picked it up. It was beautiful. Even at the age of forty-one, I remember it as a beautiful polished brass tube, with cut stained-glass pieces of all different vibrant colors, soldered together to make a six inch circle. I remember picking it up and kind of "unsure" what to do with it. Maybe a minute later, I noticed a little "eye" shaped opening on the other side of the stain-glass wheel. I put my right eye inside that space and a whole different world opened up to me. It was like entering a "cave of colors". Wow, I exclaimed, as I held the scope as it was glued to my eye. I held that scope for over a half hour, maybe even longer, I lost all sense of time and where I was. I was no longer in a gift store, I was in a magical world full of ever changing colors. It was remarkable, I thought. No matter how I spun the stain-glass wheel, I never saw the same identical pattern of colors. I was hooked! I was only 16 years old, but I didn't even look at the price tab. I had to have that scope and I would find a way to pay for it. Twenty-five years later I still have that scope. I also have another four hundred or so. All completely different, but all had one thing in common. I never saw the same image repeated in any scope no matter how long I tried. Kaleidoscopes opened up a whole new world to me. I could have a fireworks show any day I wanted, not just on the "fourth of July". I could also enter a spiritual world that I would find never ending in its capacity of helping me with a medical condition I never would have ever imagined when I was a healthy, "the world is mine" sixteen year old boy. Something was happening to me when I reached the age of thirty-four. My left foot started to become "numb". First in the toes, then the whole left foot, then my right toes and my right foot. I didn't pay too much attention to it at first. I was a "headstrong" thirty year old that power walked 5 miles each day, with my wife, Cheryl. I also was a "seasoned" windsurfer", roller bladder" and worked out at my local gym at least three times a week. Then, I developed a large blister on the sole of my left foot. My feet where so numb I couldn't even feel it. That blister got infected and I found myself on forty weeks of home IV therapy administered by my wife twenty-four hours a day. That's a long time to spend in bed. I had a lot of time on my hands and my spirits were low to say the least. Cheryl moved some of my favorite scopes so that I could look at them while having my IV therapy. I could leave my "bedroom of boredom" and go into my own spiritual world each scope provided. Guess what?. Even forty weeks of "kaleidoscope therapy", I still never saw the same image repeated. That's magic, and kept me happily occupied during this period of IV therapy "jail". This, however, was only the beginning of what was to become a illness of Chronic Pain.

During the next couple of years, that foot numbness turned to raging pain. My feet felt like they had been put into a vault of boiling oil. Then the pain would change to feel like my feet were plugged into a electrical wall socket. The pain was never-ending. I lost all my feeling in both of my legs from the knee down. I went through thirteen foot operations which included a partial amputation. I spent months in "walking casts" to keep from getting the same infection that just wouldn't go away. The medical term was called "osteomylytus". I nearly died twice from blood poisoning and spent a lot of time in and out of hospitals. At Johns Hopkins Hospital, in Baltimore, Maryland, I was being treated by a team of seven physicians. It didn't take them long to make a diagnosis that I had a incurable disease called, Peripheral Neuropathy, a nerve disorder, they had no idea how I got, or how I would ever get better. By the year '2000, I was in chronic pain every minute of everyday. Nothing could take the pain away. I tried dozens of medications, raps, gels, and non of them could take away the pain. I came to a realization. Too many times, "my higher power" had taken bad things and turned them into "good", mostly "extremely good" things. I decided to accept my illness and see what a wonderful life I was given. The illness had taken a lot out of my life (walking, playing golf, baseball, etc.) but it gave many opportunities as well. My wife, and my son showed me just how much they loved me. I had a college degree in music and film and had a company that wrote original music for all types of media. I had a "vault" of kaleidoscopes that kept my mind on the amazing colors and textures instead of on my pain. Because I was a musician, I had access to all kinds of "Dance, Stage and Electrical" lights that were used whenever bands played concerts or at parties. My hands were the next stage of my body to be affected by my disease, where my fingers hurt and were extremely sensitive to touch. I couldn't hold scopes like I use to be able to, so I purchased and added to my music business "Projection Kaleidoscopes". It wasn't long before I could lay on my bed (the most comfortable position for me now) and turn off the lights and see the magic "wall to wall" or ceiling full of all kinds of colors and shapes. I started writing music that became "film less soundtracks" to my Projection Kaleidoscope" lights. I composed and copyrighted a music "CD" that I added to my newly developing business of "pain management" through the use of music, lights and meditation. This business grew so fast I could hardly keep-up. It seemed that I had found a "nitch". There were a lot of people like me suffering from Chronic Pain. There were even more that had a passion for kaleidoscopes and anything and everything that had something to do with them. I had invented a "industry" solely because I had the disease of Peripheral Neuropathy. I was happy and still am!

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