ALS Will Not Stop Our Love

Sandy and I dated over 20 years ago. I was waitressing during my college years when Sandy entered my life. He had come to the restaurant to start his management career and we immediately connected. Although things did not work out at the time and we went our separate ways, we stayed in touch.  The seemingly inevitable occurred when our paths became parallel many years later and shortly after Sandy’s ALS diagnosis. I still vividly remember that very fateful day when I learned of his ALS diagnosis. It took five long days for him to bring himself to tell me. He lived alone and small tasks required time and energy. Although Sandy was armed with increased determination, he was steadily losing muscle coordination and strength. As time went on, our children eventually met as we grew closer. Since Sandy could no longer drive, getting his son to his weekly football and basketball games afforded the five of us a chance to spend time together.

This February will be a rather poignant month for us. It will have been exactly one year without Sandy’s daughter, who is forever ten. We lost her after a seven-year battle against cancer in 2020 right before the Covid19 pandemic. Sandy was her rock throughout her treatments, countless overnight hospital stays, and trips for emergency blood and platelet transfusions. I honestly can not imagine how helpless he must have felt during her decline while dealing with his own inability to move and speak.  During the time, our daughters considered themselves “sisters” and my sweet and loving daughter learned an invaluable lesson from his courageous daughter about living in the present. 

I feel incredibly lucky to be in Sandy’s life and have never been happier. Both Sandy and his daughter have truly taught me how to enjoy life meaningfully and purposefully, especially with the people around you.  I think this is the meaning of the human experience.

My wish for each and every one of you is to find joy, even in the smallest ways and to live life’s moments.  The last time I heard his voice would be just moments before he underwent an emergency tracheotomy in August 2020.  His last words were  “I love you”.   He is on a ventilator nowadays and although he can not speak, move or eat, his great sense of humor and positive attitude continues to shine through every day with the use of assistive technology, an eye gazing device.

ALS will not stop our happiness. ALS will not stop our love and ALS will not stop us from living life to the fullest.

-Submitted by Dorothy Pao