I thought I would write a blog post about Syringomyelia as there are still very few people in the world who actually know what it is. At one time it was considered a very rare disorder. Since the invention of the MRI machine they are finding many more people who have this condition in their spinal cords. I went over 15 years after my symptoms first started. I was finally diagnosed in 1985, that was purely by accident. A student doctor visiting with my puzzled neurologist just read about it in class that week. I was in the VA Hospital a week later having a drain placed in my spinal cord to drain out the excessive fluid. Today my spinal cord resembles this picture but the Syringomyelia cavity extends the full length of the spinal cord.
Barbara White a young woman living in Texas was diagnosed at about the same time as me. The National Organization for rare disorders Nord wanted someone to start a support group for people Contracting Syringomyelia. Barbara White and her husband Don decided to do that job and they founded ASAP which is still operating and growing today as the main support group for people with this disorder, it also includes those with Chiari Syndrome a disease where the brain stem protrudes down into the spinal column. I have enclosed a link to ASAP’s website.
Events that are beyond our control often times steal our mirth. That is the worst kind of robbery and terrorism. Politicians, “please don’t rob our joy and peace everyday.”
You might still be in that bed that is becoming so hard to crawl out of, your eyes half closed. It is tempting to stay there in peace with low pain. Your morning bathroom stop gets longer, sitting on the toilet for half an hour hoping for the prune/bran/apple cocktail to work. You might be reclined in your easy chair or reading a book or a newspaper, it suddenly dawns on you. Your days on this earth are “dwindling down to a precious few.” The life that you happily led is slowing down at what seems like a blurringly fast pace.
Medical costs from you’re wasting body is taxing your financial health. Your guarantees and safety nets are tattered and torn. You try to remain positive but how can that be done? You cautiously and quietly realize in the back of your mind that everything you ever loved and lived for will soon be left behind.
Our goal has always been since birth to master life on this Earth. We were always taught to live a life of HOPE. Now as that earthly hope seems gone, we are offered a brand new hope and a new life and a peace that is beyond what we can comprehend. We have that hope to leave this earth and spend eternity in a new body, at a homecoming with no cares or woes.
My idea of how this young man died from lack of oxygen to the brain is possibly way out in left field. I thought I would share it anyhow. I have sleep apnea and when I fall asleep in my recliner chair my head automatically hangs forward because I do not lay my chair back.
This cuts off the air flow through the trachea. I will wake up as if I’ve been in REM sleep after just a few minutes. I can tell my body is lacking oxygen and it’s affecting my brain. It makes my limbs quit working sometimes.
I do believe this young man could have been forced into a position for long periods of time with his head bent forward so his trachea prevented air from reaching his lungs. That is possibly why he died from anoxic brain damage.
This book is now available in paperback.
Please read these reviews from the Bay Area Bad Guys.
This week, show us something that doesn’t maintain a straight line.
My great-grandfather came to the United States from Norway in the 1880s. He and his family settled in Dakota Territory, it is now called South Dakota. They lived in a hillside dugout and later a sod house near a small town that became known as Hayti.
The name of the town originated from the tall hay that grew around a lake near that town. It was much longer than the prairie grass. The grass or hay was tightly twisted together to use for fuel in their stoves.
There was no roads or railroads at that time so there was no way to get coal for burning. The only fuel for their stoves was cow chips, buffalo chips, or Twisted hay or grass.
Great-grandfather lost his first wood frame home to a wind driven prairie fire.