At 5:30 AM I drive out of my driveway in Valrico, Florida, heading east to Cocoa, Florida and the Transverse Myelitis Association walk led by Tina and Jason Robbins honoring their daughter, Sarah. I’m enjoying a cup of coffee while driving down I-4 through Orlando. The Walt Disney Magic Kingdom is on my left, always an exciting and happy place. At this time of the morning the crowds have not yet begun to clog the Interstate or fill the parking areas, but they will, later in the day. As I continue through Orlando, it’s about another fifty miles to Cocoa. The sun is just peaking over the horizon, a beautiful orange color with a few dark clouds, looking somewhat like an eyebrow. This is the beginning of another beautiful day. My thoughts are with the Robbins family, knowing they have put an enormous amount of effort into this event, wanting to raise money for the Transverse Myelitis Association and dedicate it to a daughter they love and wish to honor. Having made several attempts in the Tampa area to get a support group together, I know how difficult it is. I’m saying to myself, “I hope the Robbins will be happy with the attendance at Sarah’s event”. Being an optimist and a fan of what Walt Disney and the Magic Kingdom have done for our state, I’m hoping there will be ‘Magic” in the day and the Robbins family will not be disappointed. I’m looking forward to meeting and visiting with other transverse myelitis patients, to compare and exchange thoughts and hopefully successes that might be of some help to all of us.
After getting to Cocoa and locating a McDonald’s restaurant for an Egg McMuffin and another cup of coffee, I proceed to try and find 401 Edgewater Drive and the waterfront park that Tina had described in her e-mail. That’s easy enough. My MapQuest directions ask me to go down SR-520 to Edgewater Drive, turn right one block and it will be right there. Parking is somewhat of a problem when I get there. There are no spaces. Finally about a block and half away, there’s a spot in a three (3) hour maximum zone. Thinking “I will probably be here no more than two hours”, I park, get out my walking cane and begin walking toward the park, not knowing if this is 401 or 601, but I am sure hoping it’s close. Getting closer to the park, I can see a huge crowd of people all wearing blue tee shirts. Now I KNOW I’m in the wrong place. This has to be some local athletic event with all the participants getting assembled. I’ll go up and ask somebody the location of 401. Getting closer and starting to walk through a beautiful large stone archway that leads to the park, there’s a sign posted on one side of the arch “Transverse Myelitis Association”. I’m astounded. As I approach, I see that the blue tee shirts read “First Annual Central Florida Walk For Transverse Myelitis in Honor Of Sarah Robbins”. I’m truly shocked, amazed and glad. Getting still closer, I see tables lined up all along the walk, first a registration table, then a blue tee shirt table, a Krispy Kreme Donut table, coffee, water and all kinds of other fund raising items. WOW!! There are volunteers and supporters everywhere! Sarah’s aunts, uncles, cousins, friends, and on and on. Many are people from the community of Cocoa there to support Sarah. Truly amazing!! Over and behind one of the tables, is our beautiful smiling Executive Director of The Siegel Rare Neuroimmune Association, Chitra Krishnan. Having met Chitra several times at some of the Transverse Myelitis Symposiums, she is one of my favorite people. Chitra has been instrumental for years in helping our association even before she became Executive Director. When Chitra was with Johns Hopkins she was always a big supporter. I have heard our President, Sandy Siegel, say many times “If you want to get some information, action or help, call Chitra”. We are very lucky to now have Chitra running our association and from the large crowd, I knew immediately she had a hand in helping to put together this wonderful event. During the day we had several conversations and during one conversation, she asked if I would write a blog about the events of the day. I was honored and gladly accepted. This was turning into such an action-packed and exciting day; it would be an easy task, and an absolute pleasure to write about it.
After finding the registration table, I went to check to be sure my e-mail registration had gone through. The registration identified me as a sufferer of transverse myelitis. So that others attending the walk could recognize those affected by the illness, Tina Robbins had a beautiful flower pinned on each of us who would be identified as “victims” of TM. This was a brilliant idea, as that allowed us to identify others in the group like ourselves and for the other supporters to be able to identify us as being a sufferer of the illness. I immediately located Tom Kearney (fellow TM sufferer) and his lovely wife. We had a great time getting to know each other and exchanging symptoms we each suffered from our battles with TM. We also were able to share remedies that have been helpful. During the day we met two other ladies that were sufferers of TM. While we were all talking and enjoying getting acquainted, in the background, there was a large covered stage where a DJ had set up an audio system, and was playing music that seemed to energize the crowd. It was pleasing and enjoyable music.
The star of the day and the young lady we were all there to honor and support was brought in, to the delight and applause of everyone attending. Jason, Sarah’s dad and Tina, her mom, were on the stage making introductions and especially thanking those volunteers and companies that had contributed to make this event possible. Those companies included, Premier Primary Care, Designer Press Inc., Imperial Cleaners, Huddleston, Robbins and Riddle, PA, Law Offices of Jason Robbins, PA, Sea World, Avion Insurance, Firehouse Graphics, Ryan McDuffie DJ Service, Riverside Landscaping, Tellis, Barr and Shinn Families and last, but not least Creative Magic. I don’t know who gets credit for all the ‘Magic’, but we can certainly start with Sarah, her brother Zach, and her parents Jason and Tina. Along the way Creative Magic must have done their part. The talks by Jason and Tina were pretty emotional and Tina needed, and received, a grand applause from the crowd to get her through her part of the program. And then Jason announces to everyone where we will line up to begin the walk. We will be on the sidewalk that circles the park.
But, first, Sarah is going to try and get up from her wheelchair and take a few steps to start and lead the procession. This is another very, very touching time. After Sarah maneuvers her wheelchair to the designated spot and locks the wheels, she places her hands on the armrests and strains to rise out of the chair. This is a real struggle and she needs to sit back down, but not for long. She is determined. Again she struggles to rise from the chair. There must have been two hundred people there thinking just like me. We are straining in our hearts and minds to help her get up. There is applause, she continues to struggle and finally she is standing erect out of the chair. She takes several steps on her own with the encouragement of her physical therapist who is right there to make sure she is safe. There is tremendous applause from the crowd as she returns to her chair. Smiling, she rolls ahead and leads the ‘blue shirt’ crowd that is walking behind her in support. There were two lovely ladies that were relatives and friends of the Robbins that walked along and kept me company and provided great conversation. They certainly did make my walk pleasant.
Tom Kearney and I had taken ‘squatters rights’ on a shady bench near the registration area, so I took a short cut and returned to that bench. There were a couple of very nice and attractive ladies that came and sat down. They wanted to know more about transverse myelitis. They were close friends of the Robbins family and would like to be more knowledgeable about this terrible illness that has affected Sarah. They knew I had suffered the illness too. They saw the flower. It‘s funny how flowers attract ladies. I know it had to be the flower, it couldn’t have been me, but I definitely enjoyed the visit.
Several times I looked out at the crowd and thought, there are two people that I wish could be here to see and enjoy the success of an event that brings attention to this dreadful condition that affects many people all over the world. Sandy Siegel would have a ball meeting and talking to the folks that made this event happen. Dr. Douglas Kerr would be very pleased to see a successful event bringing attention to transverse myelitis, a condition he has spent many years of his life trying to understand and find cures.
After the walk, Sarah’s dad, Jason, brought her out on the lawn area so we could individually meet and greet her and wish her well. I had prepared a short document I thought she might enjoy. It was a list of the SEVEN WONDERS OF THE WORLD that most of us adults with TM are familiar with. They are not the Pyramids or the Grand Canyon, but the wonders of sight, hearing, tasting, touch, feel & reason, laughter and most important to love and be loved. Wonders we may have heard of many times, and should never forget. When I prepared this and even when I went to greet Sarah, I did not realize she was non-verbal, but her dad told me he would read it to her and she would understand. Jason told me this condition was prior to transverse myelitis. When I first met Sarah and told her that I too had suffered an attack of transverse myelitis, she was a little shy and covered her face with her hands, but after a few moments she looked up, smiled and opened up her arms offering a hug. We had a grand hug and I walked away realizing I had just met an exceptionally special young lady. Without speaking, she is reaching out and touching many people in a very positive way. I had a warm and privileged feeling.
Walking back to my ‘squatters rights’ bench, a lot of people came by carrying bunches of blue balloons. They all assembled on the lawn. This couldn’t have been choreographed any better. The balloons were released as music was playing. I’m pretty sure the song was “The Wind Beneath my Wings”. There were hundreds of blue balloons that rose up in the sky and drifted over the Indian River that runs beside the park. Almost magically, a gentle breeze was blowing them northeast and will take them over the Kennedy Space Center, where over the last fifty (50) years a lot of ‘Magic” has occurred, then out over the Atlantic Ocean. What a stunning sight!!
After reluctantly having to leave, driving back through Orlando with The Magic Kingdom on my right the word ‘MAGIC’ has a special meaning today. Sarah’s Magic is real.
~ Ron Raulerson