Last summer when the ALS Ice Bucket Challenge was in full swing, I witnessed friends, and friends of friends, participating in the challenge and posting their hilarious and inventive ice bucket videos on Facebook. But for my family there was no laughter involved in the ALS Ice Bucket Challenge, because, at that same time, my sister-in-law of twenty-five years, Victoria Lynn Kruse, had just received THE diagnosis.
For those who participated in the challenge, the hard part was over after one bucket of ice water was thrown on them. For us, just one family out of 20,000 annually who receives an ALS diagnosis, every day since has been a challenge, as one endless bucket of icy cold water continues to be dumped all over our lives. All day. Every day. All night. Every night.
Amyotrophic Lateral Sclerosis. ALS. Lou Gehrig's disease. Call it what you want. What it is is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. As the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, those suffering from the disease lose the ability to speak, eat, move and breathe.
August of 2014. My family's ice bucket challenge had just begun.
I sobbed when I received the news of Vic's devastating diagnosis, but I found myself buoyed (not surprised) by the text I received from Vic: "All is well with my soul. It's my body that's not cooperating." What a testament to my sister-in-law's steadfast faith!
In just a little over one year since I received that text, my sister-in-law has gone from a healthy, vibrant, early 50-something woman -- wife, mother, daughter, sister, sister-in-law, aunt, friend, active member of the community -- to a woman held prisoner in her body by dying motor neurons, as she has lost the ability to walk and communicate. In that time, Vic has become reliant upon caregivers 24/7 for each and every activity of daily living that the rest of us take for granted. From bathing, dressing and eating to...everything in between.
ALS is a robber and a consumer. It robs its victims of their independence and privacy as it does nothing but consume -- precious time as a family, emotion, function...and all the resources of the families affected.
As any family living through a catastrophic illness can tell you, resources are rapidly depleted by needs not covered by even the best insurance policies. In my sister-in-law's case, employing the caregivers necessary to assist her every day, all day and all night, is a cost borne by her family, not the insurance company. As her illness progresses, so does the need for more caregivers.
The support my brother Ron and his wife, Vic, are receiving on a daily basis is a heartwarming community effort spearheaded by their church community -- or my Texas family, as I like to call them. They're the most wonderful, giving, loving people you could ever hope to meet. They visit. They pray. They cook. They drive. They do airport runs. They do. Everything. And more. And for those of us who cannot be there every day, we are most grateful.
Tonight, I was once again overcome with emotion when I saw a Facebook post by Savannah Lyle, the daughter of one of Vic's dear friends, Jennifer Lyle. I mean, we expect the adults to pitch in. But when a young woman spearheads her own fundraising campaign to honor my sister-in-law, that's inspiring.
In Savannah's own words:
Even on the hardest days, Vicki remains herself. Her mind is not affected by the disease at all, only her communication and motor skills. She still smiles and laughs and makes frequent jokes. And her faith is carrying her through each day.
We ask that you donate whatever you can, every little bit helps to cover the medical expenses. We also ask for you to keep Vicki and her family in your prayers! We know that all things are possible with God! We thank you so much and please share this with your friends.
If you click on the link, you can read more from Savannah Lyle...