Volume 9 Issue 2
Article
Alaska Maggie Kay Winston is the new support group leader in Alaska. Ordinarily, the support group leaders write these introduction articles for a new state or country support group or a new support group leader. I am making this introduction for Maggie, because she is currently recovering from a severe pressure sore and surgery. Thank goodness, she is doing much better and is feeling good. Maggie got TM a few years ago on her twin son’s first birthdays. Over a short period of time, she lost all function below her shoulders, including the ability to breath on her own. She has since been weaned from the ventilator but remains a full quad. Pauline and I met Maggie, her brother, Huey, and her good friend, Sheena, on a small plane on our way to Victory Junction Gang Camp for our first retreat weekend. Maggie was on the third leg of flights to North Carolina and had been traveling for more than twenty-four hours to participate in camp. It was pouring rain in Charlottesville as Maggie was carried onto the plane by Huey and Sheena. Her bright turquoise hair was dripping wet and the three of them were laughing hysterically as they lowered Maggie into her seat in the bulkhead and covered her with a blanket. Pauline looked at me and pronounced, “they’re coming to camp.” Pauline and I were two rows behind them. I introduced Pauline and I and gave Maggie my TMA wristband. And thus began our love affair with Maggie. Pauline and I love Maggie as a member of our family. I’ve told Maggie before that with as protective as I am, G-d knew what I would have done to a daughter, so he gave her to someone else. While Maggie has been spared my incredibly neurotic worrying, it is only by matter of degree. Maggie gets the periodic calls from me during which I interrogate her on various health matters, her progress in school, her diet and nutrition, and everything else under the sun. Maggie tolerates my obsessive activity because she’s not in the least confused about where this worrying comes from in me. She knows how much we love her, and she knows that she’s a quadriplegic living in a community of 5,000 people in a place where there’s no snow on the ground for ten minutes a year. I love the work that I do for the TMA. There is nothing more motivating and energizing for me than to provide guidance to people who are seeking information and a strategy for managing one of the most devastating experiences they are likely to have in their lives. I always hang up the phone feeling very good about how I spend my time. But there are many times when I hang up the phone and feel emotionally drained. No matter how many times I’ve had a conversation with a parent about an infant going through an ADEM or TM attack, I’m an emotional wreck for a while after the call. When the emotions accumulate to a certain point, I begin to seek my own support network to manage these very complicated feelings. No matter how I’m feeling, after a conversation with Maggie, I’m feeling good. Maggie is one of the most positive, well-adjusted, inspirational people I’ve ever met. Period. Maggie is just so comfortable in her own skin. She and Jim share this perspective and attitude about life. It remains totally remarkable to me. Both of them have recreated a great life after suffering this horrible challenge of not being able to move a muscle below their necks. A conversation with either of them almost never involves any of these physical issues. Maggie and I always talk about her boys, music, her college courses, her future goals, what kinds of things she is doing with her friends, and her current interests and hobbies. She started skiing last winter through an adaptive sports group. There are photos from these ski trips with her son’s on her Facebook page. When I need a support group, I have Maggie. Now Maggie is Alaska’s support group leader. Alaska, you are so very fortunate to have her. If you live in Alaska and have TM, ADEM, NMO or ON, please get in touch with Maggie and please get involved in her group. Maggie Winston |