Over the last few weeks my Facebook and Instagram feeds have
been filled with people accepting and challenging friends in the ALS Ice Bucket
Challenge. I’ve watched videos of
friends, family, strangers and celebrities, some have made me laugh and some have
left a bad taste in my mouth because it seemed their purpose was to only make a video that would go viral. I am beginning to get a sense that the message has been getting lost in the entertaining ways people have been getting wet. When I watch each video I see a special face, the face of someone I have lost to ALS.
and I hope he doesn’t mind as I share them:
mouth shut about this but I tired of hearing the hate. My grandmother was
diagnosed with ALS when I had just turned 18. I don’t know how many of you know
the particulars of this disease, so for all you who question whether this is a
worthy “trend” or not I’ll explain. First, her she lost her speech,
then the use of her hands, followed by her arms and legs. Basically a complete
inability to move any part of her body. All while completely conscious and
fully aware of what was happening. Eventually she passed when her lungs failed
to do the job. This was a 3 month process and she passed in our family home. I
wouldn’t wish this on my worst enemy. Point= Please stop the hate, keep the negativity
women I’ve know, our grandmother Josephine Veronica Pack.
|Grandma and I when I was probably about 4. We were on a road trip to Mexico.|
my life was not as turned upside down as my parents and brother’s was, but Jim
& I did what we could to give them each a break from care giving. Our times with Grandma involved keeping her
company, helping her if she needed anything and to feed her from a feeding tube that had been inserted in her stomach. What I remember of
that time more then anything was the frustration I could see in her eyes when
she was trying to communicate a need and I was unable to understand the message. She
wanted to speak so badly but her body just wouldn’t let her. I can picture
those times so vividly and my heart breaks every time.
grandmother and having the privilege of hearing her wisdom daily until the day I
was married in 1994.
dinner table to use the restroom because your plate might get cleared while
your gone. She did it to me every time.
Another dinner time lesson was Grandma always has your back and if you
were forced to sit at the dinner table until you to ate all your peas, you’d be
sure if you sat long enough and Mom and Dad were gone, Grandma would take care
of it for you. I loved that. My grandma
helped me when I was learning to tap dance. Many did not know but she was a
professional dancer as a child and young teen. Finally, my grandmother also taught me to
never share your dirty laundry in public. I’m sure if she were here today she
would be very disappointed in the private, slanderous, unfiltered posts that
can be found on Facebook everyday.
|One of the last pictures I have of Grandma before she was diagnosed with ALS. This was my wedding day in April 1994.|
Grandmother was a couple days before she died. I had bought her a teddy bear
dressed up like an old fashioned granny for Mother’s Day. It was suggested to give
it to her early due to the chance that she might not make it to Mother’s Day. I
remember giving her the bear and for the first time in a long time we were able
to communicate. In her eyes I saw joy, peace and love. I knew she knew I loved
her and I knew she loved me too. She died on Mother’s Day evening in 1995.
name my daughter Alexa Josephine I felt I finally had my chance to honor her.
Today with this post I am able to do it again.
your intentions, I thank you for bringing awareness to this disease. Please remember for every face you see cringing in the cold water there is a also a face of someone battling ALS.
families and to bring wisdom and knowledge to those finding a cure.