Saturday, August 23, 2014

What I Lost To ALS

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. 

My brother Nick, recently posted on Facebook his thoughts and I hope he doesn’t mind as I share them:
Hey yall, been trying to keep my 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 to yourself.

I was so proud of him for standing up for one of the greatest 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.

I was newly married when Grandma received her diagnosis; so 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. 

I was very lucky to be able to grow up living with my grandmother and having the privilege of hearing her wisdom daily until the day I was married in 1994.
My favorite lesson from childhood was to never leave the 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.

 My final memory of my 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. 

My grandmother meant the world to me and when I was able to 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.

So for all who have done the ice bucket challenge, what ever 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. 

I leave you with this final prayer:
May the Lord watch over those suffering with ALS and their families and to bring wisdom and knowledge to those finding a cure.
Saint John Paul II, Pray for Us.

Until next time,

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