I’m not one to respond to topics that fill my Facebook feed…but this one is personal.
I’m sure you’ve seen it…celebrities and maybe even some of your friends dumping buckets of ice water on their heads to raise awareness and funds for ALS. In the past few weeks, the ALS Association has seen 1000% growth in funding due to the #IceBucketChallange social media sensation.
It all started with one young man in the Boston area. Twenty-nine year old Pete Frates was diagnosed with ALS, also known as Lou Gehrig’s disease, in 2012. Since, this former baseball player and father-to-be has become paralyzed, requires the use of a feeding tube and cannot talk due to the neurodegenerative effects of ALS. The challenge began with he and a group of family/friends in his hometown but through the use of social media {#IceBucketChallenge} the effort has taken off.
The #IceBucketChallenge is this: dump a bucket of ice water on your head then challenge 3 others to do the same. They either do it within 24 hours or donate funds to the ALS association.
It started as a way to raise awareness for this horrible and maddening disease. But in a matter of months the #IceBucketChallenge has done more for this often overlooked disease than many other efforts combined.
And I couldn’t be more thrilled for those that will be helped through this awareness and fund raising. But as I watch video after video of icy water spilling out over head after head I can’t help but wish there were more stories being told. This all started with the story of a brave man, in the trenches of the war that is ALS. I’m so glad his story is being told. But there are countless more lives whose stories need to be shared – those still fighting and those long resting after a tireless battle with this disease.
Here is our story:
My precious mother-in-law, Linda was only 61 when she began to feel her leg muscles weaken. For months she explored possibilities of what was happening to her body. Then one bitter day in the middle of the summer she got the news – she was suffering the early effects of ALS.
The next few months were hell for her and honestly, for our whole family as we watched our loved one deal with the physical and emotional prison that is ALS.
First her legs stopped working. I can remember having to physically lift up each leg to get her into a car. Then her arms began to weaken. She ate slowly or had to be fed. We called in 24 hour nurses to try and make her comfortable. But little worked because not only did this evil disease torment her body, it tormented her soul as she struggled to understand how and why.
There is no treatment. There is no cure. Until more research can be done and a treatment or cure found, ALS is a countdown descending over the lives of its victims.
Before she was stricken with the disease, Linda was full of love and life. She never met a stranger and loved to get to know every person who graced her presence – from the grocery store clerk to the house painter freshening up her walls. She loved her family fiercely, including her then 4 and 2 year old granddaughters and the boy nestled within my swollen belly. She never met my little man but I know they would have been precious together – he has her joy.
Just 6 short months after her confirmed diagnosis and just a little over a year after her first symptoms, we were compelled to put my mother-in-law in an assisted living facility. With her mind {and heart} intact while her body continued to diminish, she suffered the pain of both a body that was shutting down and the reality of what was yet to come. We knew the days ahead would be long and hard but we linked arms as a family around her.
Just over a month after she entered the facility, Linda passed away peacefully in her sleep. We got the call very early one morning. It came as a shock as there were no signs that it would come that soon. After processing our loss we settled in our hearts this was God’s mercy sparing Linda and our family what was to come.
Her legacy lives on within our family but this world is not the same without her. Her love, her joy, the way she made every birthday and occasion so special. Her generous heart and her fun-loving spirit. This is what ALS could not take from us. It may have robbed her of these traits while it inhabited her body but it cannot steal the legacy of her life.
I am so thankful for brave people like Pete Frates who stand up to life’s deep disappointments with courage that will change a world he may not get to enjoy. His selfless act will impact lives for years to come.
I hope people both well-known and not will continue to immerse themselves in icy water to raise awareness and funds for the ALS association. But more so, I hope the #IceBucketChallenge will open the doors for more stories to be told. Stories of warriors fighting a battle they know they cannot win {yet}. Stories of real people suffering a mysterious disease that many know little about.
I personally will not be participating in the challenge but my brave sister-in-law will gather with her co-workers at The Country Music Association on Monday and bear the chilling effects of the challenge in honor of her mother. I will be cheering her on while I do what I do best – write the words of my heart in hopes that someone will read and take notice.
And most importantly, I will continually lift up families like the Frates in my prayers as they courageously fight. As you see videos of your crazy friends and celebrities douse themselves with ice and water will you join me in doing the same? Stop and say a prayer for those battling ALS. . .find someone in your area struggling with the disease or support a friend who’s loved one is suffering.
ALS is one of the most maddening diseases for so many reasons. I’m so thankful this illness has come to light so those who suffer don’t have to suffer in silence. People are finally talking about it and I hope the talk will go beyond the chilling thrill of this challenge. I hope the stories will be told and the conversation continued to empower those working to find a cure for ALS.
Is someone you love suffering from ALS? Have you lost a family member to the disease? Are you currently walking through life with ALS? We want to hear from you. We want to stand with you in love and support! Please leave a comment telling YOUR story.
According to the ALS association, approximately 5600 people in the US are diagnosed with ALS each year and 30,000 Americans have the disease at any given time. The statistic is not impressive compared to other illnesses which is why ALS often goes unnoticed.
Read more facts about ALS here.
I have two friends who lost their moms to ALS.. So glad it is being recognized and thanks for sharing Linda’s story.
Jessicia, thank you so much for sharing Linda’s story! I miss her so very much. I am thankful for the recent awareness that has been given to ALS. I pray they find answers and a cure so other families don’t have to suffer so!
Excellent.