I was diagnosed with ALS 1 ½ years ago after numerous tests, inquiries, and office visits.
My symptoms were non-bulbar and exhibit still as physical disabilities. After I struggled through the grieving process, I embarked on a journey, which has become a continuing path of life adaptations. Some phases of this path have been easier than others. Sometimes time stands still; sometimes it accelerates. Driving my car, taking a shower, preparing dinner, getting dressed, using a wheelchair, feeding myself, writing a letter, tying my shoes, holding my coffee cup. The list has no end and every new discovery leads to the realization that life continues to spiral downward and become more of a challenge with each new hardship.
As we all know, the physical challenges pale in comparison to the mental, socio-emotional, and spiritual issues. Accepting the new normal can be disheartening, depressing, and even disastrous. The personal strength it takes to define yourself like this often feels out of reach. How do we cope as we continue to live life, not knowing how our story comes to an end? How have I managed my life in order not to cast away the hours, days, and weeks I trust I still have? What do I need for life-support in every sense? From the family, from my friends, from my medical team? For the most part, we sit alone in this position and we have to draw on our own tools in order to accomplish and endure each and every day. Partners, children, grandchildren, friends, and our community can only offer so much. We need them to cheer us forward, to buoy our spirits, to make us laugh, and to help us with our physical tasks.
But WE have to dig deep to find our own comfort, our own fortitude, our own courage to persist and make the most of what helps us survive, and maybe even to thrive.
I greet each day one at a time and strive to find joy within reach. Sometimes, that is a water aerobics class at the Y. Sometimes, a Facetime call from a grandchild. Alternatively, a good book or the sunshine. I listen to the people around me and if I get one compliment, one encouraging word, one smile, I save it up. I journal my thoughts, even the sad ones. I read spiritual poems and copy those that speak to me. I distract myself with my grandchildren, phone calls to friends, and my knitting. I do what I can and forgive myself for goals I could not reach by day’s end. When you know you are dying, you do everything you can to feel alive. I slide into my bed each night as though it were a love letter and I ask myself if I played the day well, if I took my turn at life on this one day.
As hard as it is, I try not to dwell too long on pitying myself and bemoaning my fate. It only makes me into a victim, where then I can only be weak and powerless. I rely on my army of allies to help me fight this tough battle. My professional team at Anschutz, the willing folks at ALSA, and those whom I call family or friends have all been relentless in their love and support for me. I abide by this poignant quote by Ariana Dancu when I sit in my sadness for too long: “She made broken look beautiful and strong look invincible. She walked with the universe on her shoulders and made it look like a pair of wings.”
– Liz Barclay