I recently posted on my FB page and announced to friends that I had registered to become a potential bone marrow donor. I was surprised and somewhat embarrassed that many people commented that I was a “hero” or “very brave” etc. Those terms didn’t apply to what I was trying to do at all. In fact I’m an anti-hero and fear grips me to my very core.
If I were a hero, I would be able to save the life of my aunt who is suffering from ALS.
If I were brave, I would be comfortable that we all die, we all face suffering and we’re all going to be whole and happy in the afterworld. I’m neither of those.
Amyotrophic lateral sclerosis (ALS) often referred to as “Lou Gehrig’s Disease”, nick-named for the famous baseball player that so gallantly suffered from this horrific monster, is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord resulting in muscle weakness and atrophy. My beloved grandmother died a horrible death from ALS and it to this day is one of the most devastating events in my life. She choked to death. Her mind was completely in tact yet she couldn’t communicate, eat or walk. Only approximately 10 % of cases are known to be genetic or inherited from a parent. Lucky family I have, this disease continues to rock us to the very core of our beings. Auntie is a beautiful soul who has touched my life in so many ways. She even confiscated my first Stephen King novel because it was too racy for an 11-year-old to be reading. I waited many years before attempting one of the horror king’s books and she was right – they were not appropriate reading for someone who was both naïve and scared so easily! Auntie is the true hero, while no longer able to talk or eat food, she continues to have a positive attitude, cook delicious meals for others and even drives. She’s brave beyond imagination, continuing to go for walks, attend church and celebrate family. She would never let you know that her time is so preciously short.
I’m having an annual Mother’s Day luncheon this weekend that she has attended for the last 22 years. I know that she will arrive on time, possibly with her daughter and great grandchildren and make everyone else feel special without saying a word. She will compliment my food without tasting it; she will recognize the effort I made with the table setting, gifts, etc. She will make me beam with pride that I was able to pull off such a lovely affair. She will play with the great-great nieces and nephews, she will write funny notes to her sisters and we will all have amazing memories of laughter brought on by the oldest of five sisters. She will even hug and thank me when she leaves and follow that up with a wonderful handwritten thank you card. And the fear that grips me is that this will be the last card I receive from her. The last Mother’s Day we’ll celebrate together. One of the last few times we’ll be together. I remember back to my early years when Auntie lived in California. They would come to visit and I would cry along with my grandmother when the visit came to an end. I cry now. Yes, I cry from fear and because I wish I could be the hero she is to me.
Donating stem cells from my bone marrow isn’t being a hero; it’s doing something that I selfishly wish I could do for my own. It’s a way to rid me of the pain and guilt I have as I will continue to celebrate Mother’s Day and all the other holidays that follow. It’s a way to honor someone that I cherish even without them knowing. It’s a way for me to try and get control of what I have no control over. I pray I can save someone’s child, parent, sister, brother and most especially their dear Auntie. The only reason I’m sharing my decision to hopefully donate bone marrow is not for recognition I don’t deserve, it’s to hopefully encourage someone else to take that step and maybe save a life – maybe of someone I love.