2014 Joan's Speech
"When you reach the end of all of the light you have, and take a step into the unknown, you must believe one of two things will happen, there will be something solid for you to stand on, or you will be taught to fly"
More than a year and a half ago, Tom and I learned of my ALS, and our lives pretty much collapsed. Many of the goals we shared as a retired couple, we knew would never reach fruition. For we knew enough about the disease to know it was a death sentence for me.
We thought we had reached the end of our light, but in this past year and a half, we learned we were wrong. We have been given all of you.
We thank you for being here today. We are grateful for your presence, your support for the Fight Against ALS and your support of us. I apologize for speaking to you today thru this communication program, but as most all of you know by now, I am no longer able to speak coherently. Though I am grateful for this tool, it does lack my emotional inflection - which actually could be good or bad!
We hope everyone playing golf today had an enjoyable round on this beautiful course; but if not, then I hope you can forget about it and enjoy your dinner, drinks and auction!
After last year’s golf tournament, I tried very hard to convince my kids to make this event a “one time” affair. Obviously, I lost that battle. But, I have to say, seeing all of you here today, I am glad I didn’t win. I don’t know how else to say this, but being with all of you today gives Tom and me renewed strength as we go thru this journey. I want to also say thank you and, an: I love you to Craig, Kristen, Kate, Becky, Bill and Todd. Their energy and commitment to this Benefit, to the Fight Against ALS, and to Tom and me has been unrelenting in the midst of their already busy lives. We are very proud of who our children are, proud of what they stand for and proud of the example they are setting for our grandchildren. And, we are truly humbled by that same commitment and support from Jim and Barb Kick. We have known them for almost 40 years, and we learned early on, they are two good, kind, caring people who are determined to give back and help others. It is our gift to know them and be one recipient of such goodness.
Today also gives me the opportunity to thank all of you who took part in the Ice Bucket Challenges! Many were so funny and all were impressive! The exposure ALS has received, and the funds raised because of it, has been nothing short of amazing. And, for those of you who honored me in those Ice Bucket Challenges, Tom and I were touched to our very core.
Through my ALS journey, I have met some incredibly good, new friends who also just happen to have ALS as well. Sad, but true, I probably would never have met my new friends without my ALS. That would have been my loss, for their friendship is a blessing in the midst of this ugly disease.
Though we friends share the commonality of ALS, we all differ so much in the path our disease takes. An example? One such friend and I share a few commonalities. We were each diagnosed with ALS just two days apart in January 2013, both of us can no longer speak and each of us enjoyed being physically active with most anything outdoors. Our difference? He has had to meet some real challenges that I have yet to face, but met them he has, and is an example to all who know him. I admire this man and so many like him. They were, like I was, fully engaged and active in their lives until ALS struck them and changed them forever. But though they are physically challenged now, they are the very same person inside, perhaps even stronger, for their desire to remain engaged has not diminished. Like each of you, they need that human touch that binds us all. So, I speak for them but also for myself. Please don't shy away from talking to us. We are not able to respond in the traditional way but we never want that touch to stop.
I know this has been the easy part of my journey, I have more challenges ahead, and decisions to make, as my friend has had. But, as that happens, I also know, I have so much to emulate. Typical of many, my friend always has a smile on his face and a twinkle in his eye. He, like me, has been blest with his faith, a great family, and friends.
Each one of us here today is facing challenges of our own. Mine just happens to be ALS. I have every confidence a cure will be found for this awful disease, not in my lifetime, but hopefully in our grandchildren's. It will happen because of your continued support for the tireless work and commitment of the ALS Association, MDA and so many health professionals.
More than a few years ago, a singer named Joan Baez, recorded a song that struck me then, and applies today.. Part of it says:
No man is an island, No man stands alone, Each man's joy is joy to me, Each man's grief is my own. We need one another, so I will defend,
Each man as my brother,
Each man as my friend.
This certainly rings true for all of us. For I know, neither myself, nor anyone who suffers from ALS, can get through this alone.
We thank you, today and always, for your love and friendship