It is just about a year since I first became aware of the subtle changes to my tongue and speech that would relatively quickly have a name – Amyotrophic lateral sclerosis – ALS – or Lou Gehrig’s Disease.
I have learned a lot about ALS in the past year, but have really learned much more about myself and the people around me.
I have learned that my ALS is on an inexorable path to have its way with me. That much is clear to me as I realize how much capacity I have lost in the past year, and how the decline seems to be accelerating recently. Thankfully I am learning new strategies to deal with the unfolding symptoms so I am coping relatively well with the physical challenges. Eating and speaking are real adventures, I am becoming close friends with my feeding tube, I use my iPad to speak in some situations, and I do not go far without my cane.
I accept that is my reality. Much as I don’t like it, there is no other reality.
But setting that growing weakness aside, there are many things in the past year for which I am incredibly grateful. And there are so many people for whom I am grateful.
I am grateful for the opportunity to serve. My colleagues on the Board of Directors of Reston Interfaith, a remarkably successful affordable housing and social service provider and advocate organization, have chosen me to be the new Chair of the Board. As long as I have the energy, I am committed to doing all I can to help deliver the promise of a better life to all my neighbors.
I am grateful for the opportunity to be sharing my thoughts and reflections on this blog and “meeting” so many remarkable people as a result. Writing is very therapeutic for me – it helps me to sort out all the noise in my head and try to make sense of what is going on. Being connected through this blog has brought me immeasurable new insight and strength from reading about the struggles and triumphs of my fellow PALS, and their responses to my writings has given me new perspective and strength.
I am grateful for the team of medical professionals who demonstrate with their skill and compassion the best hopes we have for health care. They are generous with their time, and best of all are remarkably honest and respectful with me at all times. My wonderful speech therapist has even taught me to drink through a straw again.
I am grateful for my VitaMix and the tasty and drinkable smoothies, soups and sauces that keep me eating and tasting real food. I am grateful for my blue convertible and sunny days.
I am grateful for all my friends who are always around with hugs, invitations, books, CDs and all kinds of laughs. I know my accounts with them are seriously overdrawn, but hope they can continue to accept my partial repayments every time I see or hear from them.
I am grateful for my wonderful loving family who provide so much love and joy and support every day, especially for Roz who is clearly the best choice I have ever made. I do not have the words to express how much I love her and how much my whole life reflects that devotion. I am so happy we get one more trip to London and Paris in July, and then to Duck in August.
I have no illusions about how hard the future will be – for me and for all of the friends and family around me. But I am working hard to take the fear out of the future and instead to embrace every day with energy, love and hope – and knowing I will not be doing it alone. So thank you to all my partners.