When Things Fall Apart
I wonder how many moms, like myself, find it difficult to push ALS out of their minds so they can enjoy a day with their grandchildren or celebrate a child’s birthday fully and in peace. I can tell you truly, Ben wanted us to resume our lives, to stop focusing so much energy on him, to be a parent to his siblings and enjoy our grandchildren. But that sense of urgency at our backs was ever present. We had to move quickly to discover the answer that had to exist on this planet somewhere. Time and energy spent elsewhere was precious time lost. It was like a race with no finish line.
I don’t think it’s possible, once ALS strikes, to return to any sense of normalcy experienced in the past. Rather, we all need to move forward into a new sense of existence that includes ALS and all the encumbrances that it brings. There is no returning to what was, only embracing what is.
I particularly like Pema Chodron’s book, When things Fall Apart for its vision and philosophy, a gift our daughter Sarah gave me when the black hole had half swallowed me. It’s a book to be read slowly, a few pages at a time. Pema’s message is simple, the implementation of it more complicated. Let everything, the good, the bad, the bitter, the sweet, pass through you. What does that mean? You have to read the book and listen to her CD’s to gain insight into her belief system. But it’s worth the time. Because as much as we hope for good health, security, peace, love and charity, life is filled with shock, pain, disappointment, fear and adversity. The form and texture may change for each of us, but no one escapes.
ALS has settled into a niche between my heart and my fourth rib. I expect it will remain there for the duration. I’ve become intertwined with patients and their families in a way I never thought possible. I understand their grief and their hope on a level too deep to measure. The work for ALS WORLDWIDE keeps me energized and fulfilled in a way I never imagined possible and has become a transformative life experience.
I don’t think it’s possible, once ALS strikes, to return to any sense of normalcy experienced in the past. Rather, we all need to move forward into a new sense of existence that includes ALS and all the encumbrances that it brings. There is no returning to what was, only embracing what is.
I particularly like Pema Chodron’s book, When things Fall Apart for its vision and philosophy, a gift our daughter Sarah gave me when the black hole had half swallowed me. It’s a book to be read slowly, a few pages at a time. Pema’s message is simple, the implementation of it more complicated. Let everything, the good, the bad, the bitter, the sweet, pass through you. What does that mean? You have to read the book and listen to her CD’s to gain insight into her belief system. But it’s worth the time. Because as much as we hope for good health, security, peace, love and charity, life is filled with shock, pain, disappointment, fear and adversity. The form and texture may change for each of us, but no one escapes.
ALS has settled into a niche between my heart and my fourth rib. I expect it will remain there for the duration. I’ve become intertwined with patients and their families in a way I never thought possible. I understand their grief and their hope on a level too deep to measure. The work for ALS WORLDWIDE keeps me energized and fulfilled in a way I never imagined possible and has become a transformative life experience.
Hi Barbara,
ReplyDeleteThank you for this site and for your putting in writing what I am feeling. My husband was diagnosed with ALS in 2/09 after a year of hospital stays and numerous doctor appointments trying to find out what was wrong with my him. When we did receive the "A" word, we were sure that it was wrong and searched to prove the diagnosis as incorrect. It has been a nightmare that I can't see to wake up from. I married my childhood sweetheart. We have been married for 37 years. We have 3 grown children and 1 grandson. My husband and I are self employed and run a small home plumbing business since 1982 with our son joining us 7 years ago. If it wasn't for our son we would have been in real trouble since my husband is unable to do any physical work. Sorry to ramble so but I just wanted to give you a small idea of our experiences. Thanks for having this available.
Marcella K.
Thanks for sharing your story. Remember to take care of yourself, let friends help when they offer, enjoy all of your wonderful family, laugh each day with your husband, get out as much as you can. Make the most of each day - something everyone should do. Sending you positive energy. Keep in touch. Visit the website. Hope lives on. Barb
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