“I’m a 58-year-old retired truck parts dealer in St. Louis. I was a three- to four-times-a-week racquetball player, part-time classical musician, and full-time husband, father and grandfather.” With these words in March 2006, Sam Goldstein inaugurated a series of occasional reports in the MDA/ALS Newsmagazine, written with his wife Jo-Ann, about the experience of living with ALS. Sam received his diagnosis of limb-onset ALS in August 2005. This is the last installment of his series.
With a heavy heart, I have to tell you that Sam passed away on October 12, 2007. As many of you know from the “Following Sam” articles, he had an amazing outlook on life and positive attitude. When I was asked to write this final chapter, I realized that this is, by far, the most difficult piece to write because I have so many mixed feelings and private thoughts.
We felt very cheated with such a quick progression of Sam’s ALS symptoms — he only lived 26 months from diagnosis. The last month was extremely difficult because he lost his ability to talk, was in a lot of pain, and basically “gave up the fight.” It was difficult for the entire family, but the fabulous hospice staff truly helped us all. Their care and compassion was extraordinary and they were here for me, our kids and grandchildren.
Over 400 friends and family came to pay their respects and celebrate Sam’s life. Several family members shared wonderful stories and favorite memories about Sam. There were many smiles and laughter mixed with tears.
The most ironic thing happened as we arrived at the cemetery — we heard the lively music of a bluegrass band playing on the schoolyard across the street for their fall festival. Knowing Sam’s love and passion for music, it seemed the most fitting tribute ever.
I have been adjusting fairly well to my new stage in life by jumping back into work and spending lots of time with family and friends. Of course, there are times of grief and loneliness, but I try to remember the good times we had in our 37 years together. The short time spent living and caring for “Sam with ALS” does not define who he was and it certainly is not the way he wanted to be remembered.
I know that we ALL hope for a cure and treatment for this horrid disease soon. With all the research that is currently being conducted worldwide, finding a key breakthrough would be the best memorial we can leave for our dear ones and future generations.