In an effort to further raise awareness for ALS in the midst of the Ice Bucket Challenge craze, I want to share the story of my grandmother, Penny Petersen, whose life was taken all too soon by this terrible disease. Along with her story, I'm sharing some of my favorite old photos of my grandma and some background on her life before ALS. (I wrote this with the help of my mom.)
Penny was born and raised in North Dakota. After graduating from high school, she joined the Marines and traveled to Hawaii as a recruiter. She met my grandpa, Walt, ice skating in San Francisco and they married months later at the Church of the Wayfarer in Carmel. They built a home together in Burlingame, just outside of San Francisco. There they raised two children, and later in life had five grandchildren.
In 1990, Penny started experiencing
hoarseness in her throat and a raspy voice. At first the doctors
diagnosed her with acid reflux, but after taking the prescribed
medications, her symptoms did not improve. Eventually, the official
diagnosis became ALS. There was no treatment and no cure. No more
tests, no more prescriptions, no more doctor appointments. They said
she could live up to thirteen years, but she said that they basically
told her to “go home and die.” My grandpa took her to two
different hospitals looking for better answers.
ALS is an aggressive and terrifying disease, essentially trapping a person in their own body, as they gradually lose control over all their muscles, slowly torturing them until they die. For her, the disease skipped the
earlier symptoms of paralysis of the limbs and went straight to her
throat, followed by her chest and lungs, taking away her ability to
speak, swallow, and eventually breathe. In a very short time, a woman
who had always received compliments on her beauty would no longer be
seen in public. She would spend more time in front of the mirror,
trying to fix the appearance of her face which now sagged as if she
had suffered a severe stroke. For a once healthy, active woman, ALS
meant no more travel-- no cruises, no walks, no shopping. Her
happiest adventure was when my grandpa could persuade her to let him
drive through the local Wendy's so she could get a chocolate Frosty,
which felt good on her throat. She attempted to communicate with her
family using those magnetic drawing boards made for children, often
becoming depressed and frustrated with her inability to express
herself, especially to her young grandchildren.
Less than 4 months after her diagnosis,
she was gone. The paralysis of her throat muscles made it extremely
difficult to swallow, resulting in many choking episodes, one of
which ended her life. At the time, my mom was 6 months pregnant with my brother and I wasn't yet two years old. My grandpa was robbed of the
true love of his life. One of the worst parts was that ALS didn't
just paralyze my grandma-- it paralyzed everyone who loved her,
leaving them utterly helpless.
Lately, I've heard many people
criticize the “ALS Ice Bucket Challenge,” whether for celebrating
narcissism, wasting water, or for “getting old.” I just
wanted to voice a reminder that for people whose lives have been
affected by ALS, the Ice Bucket Challenge has been a miracle. It's
forced everyone to talk about a disease that is almost never
talked about. As of today, it's helped raise over $62 million dollars
for ALS research! Every time I see someone dump a bucket over their
head, I'm reminded that people really can make a difference. The Ice
Bucket Challenge has demonstrated the power of generosity when all of
us band together, united for one cause. What if this inspiring
movement never loses momentum?
Let's push toward a cure for ALS and
then continue on to cure cancer, and on and on!
Thanks for reading,
and if you haven't already, please consider making a donation at
www.alsa.org !