This is my ALS: A Love Story. It is about my love, my rock, my wife, my partner-in-crime, and my Valentine, Lynne.
Lynne calls me her “freak of nature.” Who would ever think such a nickname could be such a term of endearment, and hold so much love? Hearing her say that makes me so proud to be her husband, her one and only freak of nature!
When we were diagnosed 13 years ago, I was in utter disbelief. “Shock” comes to mind. My biggest fear was to be a burden to my family and not wanting to rely on others. I hadn’t been eating, sleeping, or thinking clearly. I was merely existing.
Initially I was very angry about my diagnosis. As time went on, and my symptoms progressed, I had to increasingly rely upon others for most of my needs. Once I accepted that this was my fate, I began to see through different eyes! As I lived longer this acceptance turned into gratitude for those who were willing to help me – and that gratitude allowed me to have more empathy for those around me who willingly lived with me and my disease.
It took a while, but once I realized that those who stood by my side had “enlisted” and I was “drafted” in this war against ALS, all of my relationships took on a different meaning. Especially my relationship with Lynne. I now know about accepting help, relying on others, and being part of something greater than myself. This is the gift that my ALS has given me. It has allowed me to be a better friend, father and husband to Lynne.
Lynne’s role has morphed over the time of our ALS. When I was first diagnosed, Lynne took it upon herself to stay one step ahead of the disease and make sure things that I needed were in place before I actually needed them. This allowed me to stay focused on “Augie’s Quest” and raising funds to support the ALS TDI.
When I began to lose my ability to speak, Lynne started helping me out at our presentations around the country. Since completely losing my ability to speak, she is now my voice. More accurately, she has found her own voice. Lynne has never faltered in being by my side and supporting me. Our marriage has strengthened and our trust in one another has never been stronger. Today, I feel fortunate to know what unconditional love feels like, to have a love worth fighting for and one that would be a shame to lose.
There’s real joy in looking at the life Lynne and I have built together despite ALS. It’s also amazing to watch how lucky we’ve been in this disease, after 13 years, all that has happened. Seeing so much unfold that we never thought possible with a diagnosis of ALS – we’ve just celebrated the birth of our eighth grandchild. When we were first diagnosed, we believed those life moments would never happen. It’s the best gift.
It is Lynne and my hope that by putting our story out there, we can touch others who are going through difficult times, raise awareness and critical funding for effective treatments and an ultimate cure for ALS.
And this special Valentine’s Day, we thank each of our Augie’s Quest friends and ALS champions for sharing their unique ALS: A Love Story moments of love, too. In this ALS battle, we’ll take all the love, passion and fight we can get!