Tell Your Story

September 30th, 2011 - My ordeal with Chiari began in 1998. Like many others before me and following me, I went through a long ordeal of not being listened to and misdiagnosed. Eventually, the problem was found and I had decompression surgery and after a protracted recovery period became well and productive again. But the ordeal haunted me with questions and left a scare on my soul. To deal with it, I felt compelled to write a book but struggled with the decision to do it for a couple of years. First, I knew I wasn't a particularly good writer. While I had published a number of technical papers, it was very different from a good narrative style of writing that would be needed. I was also concerned that I would not be able to find a publisher who would be interested not only because I lacked the needed writing skills but because the size of the market would be too small for the publisher to make any kind of respectable profit.

Nevertheless, I began writing if for no other reasons but to untangle the frustrations within me. I was upset with how the medical system initially let me down and the suffering and, frankly, disrespect that I encountered along so much of the way. But, at the same time, I knew that to effectively reach others in a fashion to where they would listen, I would need to adopt a style that would neither come across as accusative or polarizing to well meaning and intentioned health care providers. So I set my fingers to the key board and decided to tell my story in a factual manner casting as little judgment upon others as possible. I figured that if I just accurately told the facts, intelligent people would figure out for themselves the problem that existed with the care of Chiari victims.

I stopped several times along the way because I was convinced no one would publish my story. Then I got a little help from above. One day, a retired associate dropped by work to have lunch with me and some of his other former work friends. During lunch he talked about his post retirement activities which included writing a couple of books on photography. He informed us that he used an on-line self publishing service and how he found it to be effective. That evening I thought about what my friend had said and made the decision to use an on-demand web-based printer. I resumed my writing, completed the book and published it using lulu.com. The first copy was sold October 24, 2005. Since that time, over 2,200 copies have been sold around the world. Considering how uncommon Chiari is, I was very pleased with the level of sales.

Over the years, I have been even surprised at the large number of emails I have received from across the globe from individuals thanking me for publishing the book and not only telling my story but essentially theirs. I have received emails from readers in the U.S., Canada, Australia, New Zealand, Taiwan, England, France, Spain, Germany, Italy, Turkey, India, and Israel. On very rare occasions, I received emails from physicians but the physicians who were Chiari patients themselves. I wondered if any physicians outside of the 2 or 3 suffering themselves from Chiari read the book as I so desperately wanted to open their eyes to the need for better care even if I wasn't a very good writer. I feared that most would toss it aside or dismiss it simply because I was a lay person.

What happened over the years to my total unknowing and now complete astonishment was that other patients as a result of reading my book contacted the Mayfield Clinic where I had received the correct diagnosis and surgical treatment that I needed. As a result, the surgeons at the Mayfield Clinic saw and treated a larger number of Chiari patients. They learned more about Chiari and the need of those suffering from it. Some of the those patients told them that they sought out the clinic as a result of reading my book and this caused the Mayfield physicians to also read my book. And, then the miracle happened.

Earlier this year in March, Dr. John Tew from the Mayfleid Clinic called me to inform me of the Clinic's decision to form a Chiari center. He told me how the decision came to be as a result of the awareness created by my book. I was not only astonished but deeply humbled. He asked for my help by serving as the chair of its Community Advisory Board which I gladly accepted.

There now exists a new Chiari center of excellence. You can read the details in the press release on this web site. I am humbled that my book was the conduit for the collective voices for many Chiari patients to be heard. I never dreamed such a positive outcome would occur.

This development is exciting for many reasons. Importantly, not only will many Chiari patients be helped but the fact that one of the most prestigious neurosurgery clinics in the world sees Chiari as a legitimate disease and not some mere anatomical variant of normal without consequences will signal to physicians across the country in general that Chiari and Chiari patients must be taken seriously.

I questioned the value of telling my story many times along the way for all kinds of reasons only to learn a lesson of a life time. To anyone with a story to tell, tell it. Tell it without bias to the extent possible. Tell it in a manner that doesn't provoke an inflammatory response and enables others to judge for themselves. Don't underestimate the value which lies within the facts alone, facts that really need no polarizing emotional window dressing. This in turn will result in others more easily embracing the truth on their own. Our quest to increase awareness is far from complete but well on its way.


Ed. Note: The opinions expressed above are solely those of the author. They do not represent the opinions of the editor, publisher, or this publication. Mr. D'Alonzo is not a medical doctor and does not give medical advice. Anyone with a medical problem is strongly encouraged to seek professional medical care.