More Than A Mile

September 20, 2008 was a landmark and glorious day with hundreds if not thousands of supporters across the country walking in the name of Chiari awareness. Because of our recent relocation to Amherst, my wife and I had the opportunity to participate in the Wrentham event. Before I go any further, I must acknowledge the local organizer of the Wrentham event, Casey Gray. An energetic and vibrant lady in her early 20's and decompressed about 18 months ago, Casey possesses extraordinary organization and leadership skills. Her event was well attended with over 100 participants. Casey was also successful in gaining the attention of the kind political servants of the Commonwealth. As a result, State Senator, Scott Brown, made a special appearance at the beginning of the event to read a proclamation from Deval Patrick, the governor of Massachusetts.

The event was moving in many ways. Everyone was friendly and shared a sense of purpose. I had the opportunity to meet many Chiari heroes from young children to adults. Some of the patients were not feeling particularly well but braved their symptoms to join the event. It was interesting to hear their stories and the fact that almost all of them lived a nightmare in finding an accurate diagnosis and treatment. This seems to be the case with nearly every Chiari patient I have meet at other events and conferences over the last 8 years. I was also touched by how many supporters were grandparents of grandchildren with Chiari. These grandparents were incredibly eager to learn everything they possibly could about Chiari and where to find the best treatment and care for their little loved ones. As a grandparent myself, I appreciate the beautiful and very special gift that grandchildren are.

For me, it has been 9 years since decompression surgery and nearly as long since feeling ill. In other words, I've been feeling pretty well for several years. What I like about these events is the opportunity to interact with others currently struggling to find wellness. It brings my old memories to life and renews my commitment to stay active and focused on the cause.

I was very pleased to meet a special Chiari patient in the height of her struggle. About a mile into the 3 mile walk, we came upon a young lady in a wheel chair being pushed by her mother. We greeted them and began to chat. The patient was Erin Mosca. Erin is 27 and has been struggling with Chiari for 6 years. In addition to Chiari, Erin has Ehlers-Danlos Syndrome or EDS. EDS is a connective tissue disorder that can result in craniocervical joint instability and other complications following surgery. When EDS coexists with Chiari special care must be taken during decompression. The association between Chiari and EDS was only recently observed by the surgeons at the Chiari Institute (TCI) in New York. As a result, they have the most experience in treating these patients.

Erin wasn't supposed to be at the event because she should have been recovering from surgery. She was scheduled for surgery at TCI the week before the awareness event but at the last minute her insurance carrier informed her that she could not have surgery because TCI was out of her network and there was no reason why a neurosurgeon in her network couldn't perform the surgery. The same carrier at first denied her the surgery all together saying that it wasn't necessary. They fought the original decision and prevailed over time only to run into another snag at the last minute. We've all seen this before but it doesn't make it easier to hear again especially when the patient can't walk.

As we walked along side of Erin, I revealed to her that I had also been confined to a wheel chair prior to my decompression. Her face lite up first with surprise and then with hope. I explained to her that in my case my arms became weak first followed gradually by my legs until I came home from work one day, used all my energy to get up the steps, sat down on my bed, and refused to walk another step. For about 2 months before my surgery, I had to use a wheel chair to get any where. Further, because my arms were so weak, my wife had to push me. For me it was devastating because a year earlier I was running about 7 miles a day. It was also embarrassing because people perceived me as someone who looked well and assumed I was faking. Since it was so awkward to explain Chiari to people who have never heard of it, I only went out in the wheel chair when absolutely necessary.

After another half mile or so, my perceptive wife noticed that Erin's mother was tiring and volunteered to push Erin. After another half mile, I took the helm. I found it very humbling to be pushing Erin. I knew exactly how she felt. I haven't taken the simple ability of walking for granted since my decompression and recovery. My only hope was that Erin would experience the same outcome as I. Erin was most curious and wanted to know how long after surgery was I able to walk. I told her that I felt the strength return to my legs almost immediately and that I was walking two days after surgery down the hall in the hospital. I told her that I started with short distances upon returning home. I had only walked about 100 yards the first day but increased the distance daily. About 5 weeks after surgery, I was able to walk 2 miles. As we discussed further details about my experience I could see the interest and determination growing on her face.

We talked about other subjects as well. When Erin told me that she was from Lexington, I informed her that I was a student of the American Revolution and since moving to Amherst was hoping to visit Lexington where it all began. Erin then told me that she was a history tour guide in Lexington and was also interested in the Revolution. As we talked about history, I mentioned that I had a profound respect for George Washington. She asked me why. I told her that I respected Washington because he was an amazing leader for his time. He valued input. He lived by the principle of equality and even put himself in harms way along side his troops. Like the fabled Lucius Cincinnatus of Rome, he valued loyalty and deplored ambition. But I stressed to Erin that Washington was also persistent and it was his persistence that was so key to defeating the British. He persisted in the face of Loyalists working against him, governors refusing to provide him with the assistance of their militia, and the Continental Congress failing to provide wages for his men that were long over due. Washington even had a plan to retreat into the Allegheny Mountains and wage a gorilla war in the event the British won. And while I didn't actually say to Erin that she needed to be persistent like Washington, I think she understood the message. Erin like Washington is a fighter. She wouldn't have been participating in the event in a wheel chair unless she was anything but a fighter. She's the kind of fighter that inspires each and every Chiari patient.

Ray & Erin While enjoying pizza after the walk, Erin informed my wife how much it meant to her for me to have pushed her. It actually meant more to me. It was a real honor to have met Erin and walk a mile with her. It is my sincere hope that Erin will prevail, leave her wheel chair behind over the coming year, and walk with us in next September's event.

-- Ray D'Alonzo



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.