Beyond ALS: Telling Our Stories

by Patty Blake on Wed, 2013-10-16 05:00

Patty Blake

Everyone has a story. Actually, each of us have many stories. As our lives weave in and out of others’ [lives], we fill pages in the books of our days here on earth.

My days are so different now. Lacking the strength to do typical daily tasks, I sit. Given the circumstances, it would be pretty easy for me to just veg in front of the TV all day. But I have my computer and Kindle and my reasonably intelligent phone. (No. I refuse to call it ”smart.”) And best of all, I have my family and my friends.

Since it became apparent to all that when left on my own, I presented a clear and present danger to my body, I now have someone with me nearly 24/7. In addition to a hired caregiver, there is a wonderful group of volunteers that comes to make sure I have what I need, pick up what I drop and lift my spirits.

They also tell stories.

I am blessed to hear about their travels, their children and grandchildren, their pets and also their health concerns. Prayer requests are shared.  Sometimes we discuss deep theological questions one minute and dinner plans the next! Through shared stories, I am transported to far off lands or simply around the corner. Now, all these conversations concern real events. But one friend writes fiction and is planning to share some of her work next time!

Next week, my mom, Margaret, turns 90 years old. Ninety years on this planet. Born between two World Wars, she grew up in several locations because her dad, my grandpa, was a United States Marine. Mom was born at the base hospital in Quantico, Va. She spent her childhood in Nicaragua, Coronado and back to Quantico.

Over the years, I’ve heard many of her stories and have mental images of them. They are a part of who she is. Let me paint you a few word pictures to illustrate.

  • Iguanas and tarantulas making themselves at home in their house in Nicaragua.
  • Young Margaret contracting malaria followed by rheumatic fever.
  • Back to Coronado. A sickly little girl. Doctor recommends dance lessons to build strength. She loves it!
  • Dance recital at the Hotel Del Coronado. Her solo, singing and then dancing to Dancing With My Shadow, a song popular on the radio at the time. She got an encore!
  • Riding her bike, fishing, swimming, dancing.
  • The parrot that so perfectly mimicked the brother and sister bickering that the neighbors were concerned for little sister’s safety.
  • Quantico again. Living in quarters. Shopping trips by train to New York City.
  • Fall leaves in Virginia, summer heat and humidity, spring cherry blossoms in Washington D.C., winter snow and slush.
  • Young love, marriage, a daughter, and two months later, Pearl Harbor. Marine husband off to war.
  • A crumbled marriage, divorce, Grandpa’s retirement after the war, back to Southern California.
  • New love, marriage, a son, another daughter (me).
  • Disillusionment and heartache, divorce, single motherhood, hard work.
  • Caring for aging parents while continuing to work.
  • Being there for us always, helping with grandkids, listening, counseling, reveling in family.
  • Mom. My first teacher and world’s greatest listener.

This ALS diagnosis of mine has been rough for her, I know. But still, she encourages me and can read my state of mind instantly over the phone. I never could hide anything from you, Mom!

“But there’s a story behind everything. How a picture got on a wall. How a scar got on your face. Sometimes the stories are simple, and sometimes they are hard and heartbreaking. But behind all your stories is always your mother’s story, because hers is where yours begin.” Mitch Albom, For One More Day

Wherever you are in life, share your stories. They’re important. You are important. My stories include this ALS business, but I spent over half a century building memories that have nothing to do with ALS. It does not tell my whole story.

Thank you for listening to my story today.

Originally posted July 26, 2013 by OK, So Far with the title Stories.

About the Author

Hi. I’m Patty, and I’m a wife and mom to two grown daughters, and I'm in my 50s, dealing with amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig’s disease, or motor neuron disease). This blog is my journey through uncharted waters. People ask me constantly how I’m doing. The short answer is “OK.” I add “so far” in my head most times. So that’s what I’m calling this little corner of the interwebz, OK, So Far. So if you’re up for it, come along on this roller coaster ride known as my life. I can’t promise much in the way of entertainment, but I’ll try not to be too boring! Thanks for stopping by.

MDA cannot respond to questions asked in the comments field. For help with questions, contact your local MDA office or clinic or email See comment policy