Latest Activity:
3 days ago
For Classical Music Lovers and ankylosing spondylitis sufferers
About Me:
I'm a classical music lover, retired programmer and luthier. I'm also a conservationist (I recycle about 60% of the garbage we produce and use as little energy as possible). A little history: My mother was mentally ill as far back as I remember, so my father raised me. I was always bad at sports in grade school and high school. My love for classical music was started in me by my music teacher during 7th and 8th grade music class. She also intoduced me to the classical guitar which started my love affair with that instrument. The classical guitar is capable of recreating more tone colors and feelings than any other instrument in the world. Just listen to some of the videos of Julian Bream and Pepe Romero on YouTube. Then when I was 15 I started to get pain and stiffness in my neck and then lower back. About a year later it was diagnosed as ankylosing spondylitis (I'm HLA-B27 positive). I am now 52 and much of my spine is now fused together expecially my neck which is permanently curved slightly downword starting between the shoulder blades, as well as the lower back, but not at all as bad as the famous Leonard Trask. But the pain and stiffness has spread to my shoulders, hands. left hip, knees and feet as well. Also, about 10 years ago I started to get numbness in my hands and feet which has progressively gotten worse. I recent MRI showed that the nerves coming from my spine are being restricted due to bone growth caused by the ankylosing spondylitis causing the numbness. Also, from my most recent x-rays, my doctor told me I have scaring of the lungs probably form the ankylosing spondylitis. I also have to add extra pillows under my head because my head will not go down all the way when I sleep and once I get into a comfortable position, I sleep for about 4 hours and then wake up in pain around 1 or 2 AM. After that is is a problem getting back to sleep. Once I get into a comfortable position, after a few minutes the pain starts again and I have to shift positions again and then just shifting positions causes more pain and spasms. I usually get very tired in the afternoon and have to take a nap. I can relate so to Joseph Merrick, and the abuse he received, when I was on the high school bus one day a bully behind me said, "Why are you so stiff? Turn around and look at me!" I tried to ignore him, because I could not turn around. But then he put his hand on top of my head and forced my head to the left and my spine in my neck cracked many times and it hurt so bad. I never said a word to him. At first I was very mad at him, then eventually forgave him because he did not know. Also, in sophomore year I was taunted and bullied before English class started for an entire year. After trying college twice and failing, I joined the Order of St. Jude where our mission was to help the hopeless and care fro them. We helped teach and shave the mentally disabled adults at St. Mary's Square Living Center. The attention adn love I felt for them I never felt before. That experience saved my life because, for the first time I experienced unconditional love which came from them, and felt worthy to be loved. I felt they gave back so much more love then I was able to give them. During that time I met my male lover through the first computer dating company called comquest in 1983. We fell in love on our first date and at first sight. We are still together today after 28 years. After about 1 1/2 years at St. Mary's Square Living CenterI could no longer make the long drive to the center and found work at an insurance company as an accounting cleck and then a programmer for 19 years. All along, my pain and stiffness were getting worse and when I was 40 I had to have my left hip replaced. I always wnated to make something beautiful. So the last year as a programmer I took a class in Vermont to learn to make classical guitars, which fit in perfectly with my love for classical music. I was able to make 4 guitars in total before it became too painful to continue any kind of work. But I think my last guitar was my best work. About 4 years ago I was diagnosed with osteoporosis due to the AS and at the same time they said I have an enlarged heart due to a leaking intake valve which is also a complication of the ankylosing spondylitis. Just last December I started to have seizures at night that I'm now taking medication for as well. Listening to classical music helps with my pain, I think it releases endophines with helps reduce the inflamation. I call it my music therapy. I love this quote from Joseph Merrick:
Tis true my form is something odd,
But blaming me is blaming God;
Could I create myself anew I would not fail in pleasing you.
If I could reach from pole to pole
Or grasp the ocean with a span,
I would be measured by the soul;
The mind's the standard of the man.
- Joseph Merrick
Jospeh Merrick made beautiful churches out of cardboard models.
Interests:
Classical Music, Astronomy
Movies:
Immortal Beloved, The Elephant Man, It's a Wonderful Life, Cider House Rules, Dead Poets Society, Boy's Town, The Shawshank Redemption
"I believe that natural beauty has a necessary place in the development of any individual or any society. I believe that whenever we destroy beauty, whenever we substitute something man-made and artificial for a natural feature of this Earth, we've retarded some part of man's spiritual growth. In contemplating the exceeding beauty of this Earth, I have found calmness and courage. For there is symbolic as well as actual beauty in the migration of the birds, in the ebb and flow of tides, in the folded bud ready for the spring. There is something infinitely healing in the repeated refrains of nature. The assurance that dawn comes after night, and spring after winter.
Rachel Carson, "Silent Spring" 1962
Mankind has gone very far into an artificial world of his own creation. He has sought to insulate himself in his cities of steel and concrete, away from the realities of earth, water, the growing seed. And intoxicated with a sense of his own power, he seems to be going farther and farther into experiments toward the destruction of himself and his world. There is certainly no single remedy for this condition. And I can offer no panacea. But it seems reasonable to believe, and I do believe, that the more clearly we can focus our attention on the wonders and the realities of this universe about us, the less taste we shall have for its destruction."
Rachel Carson, "Silent Spring" 1962
the characters he sets out to depict...but
the music must speak to the soul."
- Jean-Philippe Rameau
Tis true my form is something odd,
But blaming me is blaming God;
Could I create myself anew I would not fail in pleasing you.
If I could reach from pole to pole
Or grasp the ocean with a span,
I would be measured by the soul;
The mind's the standard of the man.
- Joseph Merrick.