Update: July 2014

When I was diagnosed with ALS over two years ago, I thought my life was over. It was a pivotal point, and indeed, nothing has been the same since. Although I am not living the life I had planned, I am not dead yet. I never expected to have the quality of life I have now, two years after that fateful diagnosis. Statistically, I could expect to be dead or paralyzed in a wheelchair. So far, that is not me. One's character is defined not by the circumstances we find ourselves in, but by how one responds when adversity is thrust upon us.

Following a period of tears and anguish, I began to explore how to deal with a disease for which there is no known cause, no cure and not even an effective treatment. I developed a personal mantra: "I need to find a way to keep my fear of tomorrow from robbing me of my today". In short, I needed to focus on living in the present. It is impossible for me to stand by and do nothing, and so I embraced awareness and advocacy. I never hid my ALS. I shared it publicly with family and friends. Then I began sharing it with strangers. I made my first speech at a golf fundraiser just three months after my diagnosis. It was emotional, but I did it. My belief is that to hide this disease, prolongs its invisibility to the public. The longer it remains invisible, the longer it will take to find a cure. If we need a face to make this disease real, then I am willing to become that. I have since made numerous speeches at various ALS fund-raisers.

It has been a tradition in my family to send a photo greeting card at Christmas along with a family update. Though painful to write, it was a tremendous relief to get that letter off. Finally, everyone who was important to me over the years would know. Whew! Soon after that, I developed this website to tell my story. It has information about ALS, my story and links to other more important sites. I soon found that as I spoke with strangers and was open about my illness, they were interested. I could not share enough information about ALS in a five-minute conversation. So I made up "business cards" that listed my title as "Person with ALS" with a link to this site. I began promoting the blue cornflower. Regarded as the international symbol of hope for ALS, it is a beautiful and tenacious flower (like those of us with ALS).

The opportunity arose to connect with NEALS and become a "Research Ambassador". I jumped at the chance. I learned about research, how to critically read a scientific article and the importance of the ALS Registry. Through Google "HelpOuts" I was able to offer live, video consults with anyone who was interested in learning more about ALS. In addition, I was interviewed by a regional magazine and featured in a four-page spread. For the past two years, I have attended the National ALS Advocacy Day in Washington, DC and lobbied Congress for ALS initiatives.

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Though it is easy to say, "live in the present", it is much more difficult to do so. After all, my body is deteriorating at an unrelenting pace. Things that were taken for granted in the first 60 years of my life are now impossible. I had been a nurse for 37 years. I have substituted advocacy for my career. I am still a wife and mother of four. Though my children are grown, I cannot expect to live long enough to meet my grandchildren. Nothing can replace that. I am still a community volunteer, working in the Military Courtesy Room at our airport. Through my pilgrimage to Lourdes, France, I have grown closer to God and become more spiritual. I participate in all research projects for which I am eligible.

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Prior to my illness, I was an avid tennis player and golfer. I had to give up tennis as my legs weakened. I play bridge now. I was able to continue golf a little longer, but then had to give that up, too. As I began to focus on what I CAN do instead of what I cannot, I reevaluated my status. My arms are still strong. I acquired an adaptive golf cart from SoloRider and discovered I can still play golf while sitting! What a delight to be back on the course again! I have pursued travel, and since my diagnosis I have been to France twice, on a Mediterranean cruise, to vacations at the beach, and from my home in New York to Florida and DC too many times to count. All with minimal use of my legs. I cannot walk a single step without assistance nor stand more than 60 seconds. I use a power chair in my home. My next step will be to purchase a van with a lift.

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There have been many lessons for me on my ALS journey. Foremost has been to learn the basic goodness of strangers. Secondly has been the blessing of just how many friends I have! Through this monster of a disease, I am hopeful that my efforts will leave a positive impact on the world I leave behind.

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Madeline Kennedy 2018