On August 5, 2014 one of my favorite college friends, Craig, posted the first ALS Ice Bucket video that I saw.
I was, initially, confused but knowing that Craig doesn’t put willy-nilly nonsense on Facebook, I pursued it. My confusion went to dumbstruck, then amazement as I started to follow the ALS Ice Bucket Challenge.
It took until the 17th for me to take the challenge. I was assessing, the way I am prone to do: Was this a fad? What was it going to do for the disease? What would my father, who died from ALS, think about it?
I can’t analyze numbers to save my soul, but human nature? I can ponder it until the cows come home, as grandpa used to say.
Sunday I showered, fixed my unruly hair into an acceptable state, then grew instantly restless. I weeded until a massive green garbage bag was ripping at the seams. Still with undirected energy, I seriously debated starting in on the neighbor’s hill for them. Yes, I love weeding.
I walked in the house, looked at Alex and said: It’s time for me to do the Ice Bucket Challenge.
Ok.
Ice bin emptied, bucket full of water, towel on hand and outside we go. Test the iPhone and let the dumping begin.
I hate being cold. Let me make sure you understand: I HATE BEING COLD. I can’t even watch movies set in cold places. Ice Station Zebra was enough to do me in. The beginning of National Treasure? I shiver the entire time.
Being drenched with freezing cold water, there is a moment, perhaps only one second of precise time, where you literally ache and feel that yes, my heart might stop beating.
My Dad Hurt All the Time
ALS, to explain in my layperson’s terms, eats away a person’s muscles. Gnawing bit by gnawing bit, Dad went from a burly 180 pounds of muscle—extraordinary for a man of seventy-six—to rail thin weight of 115 when we stopped weighing him.
ALS affects Every Person Differently
If you are paying attention to the videos made by ALS sufferers, you will see a wide range of ability and of restriction. You may think, what’s going on here, these people all have ALS? Yes, they do.
Dad’s speech was struck first.
He was misdiagnosed with a stroke he never had. We thought that his occasionally slurred speech was a result of that. We were fortunate that the ALS Association of Western PA (ALSWPA) helped us get a speaking device made by Dynavox. Dad was very computer literate and used it as well as his computer for emailing and communicating. The Dynavox was quickly nicknamed “Harry,” and became a built-in part of the family.
Dad gradually grew unable to eat solid foods.
We learned a variety of ways to puree nutritional foods for him that still managed to taste good. We loaded up on Ensure via the Veterans Administration services. If you are a Vet with ALS, pursue the VA until they cave under your onslaught and help you. We went through our congressman’s office where the unbeatable Christine helped us get through the quagmire of paperwork. Once in, the VA staff—almost to a person—was amazing.
It helped that every individual who met Dad fell in love with him.
Dad considered himself lucky that he first lost use of his left hand and arm. Lucky? He was right-handed. Up until the day before he died, he could pound a message into Harry, keeping up with conversations around him and typing in his own two cents with a rapidity that would stun a Millennial texter.
He slayed us with some of the dillies he came up with.
Our all time favorite was when in turn and unbeknownst to each other, four kids had traipsed back and forth, patting him on the head and asking if he needed anything in the space of about 15 minutes. He pounded the table, got all of us in the room together and zapped his fingers on Harry until he pressed the speak button. Gilbert aka Harry said: “I appreciate your offers to help, but I don’t give a rat’s a**.” Yep, that was Dad.
ALS people do not lose their mental capacities.
When we would take Dad to doctor’s appointments, the doctors would continually talk to me. I would look at them, point to my Dad and say, “My father is perfectly capable of interacting with you.” Dad would type something appropriate into Harry such as, “Yes, pay attention to me when I’m talking to you.”
Emotions run high for ALS patients.
It is a part of the disease, and you have to understand, it is a part of knowing that the average life expectancy after diagnosis is two years. Two years. Dad had 14 months. One of the videos I shared on Facebook was of an awesome mother who has been fighting ALS for ten years.
Next to cause issues were Dad’s legs.
He could walk with a cane for quite some time, but eventually we had to help him with standing. The VA provided a wheelchair, but we had to push him in it. The VA was extremely slow to get a ramp installed. Eventually it was and once again because of excellent help from the ALSWPA, we were able to get a power chair for Dad. Griffith Road is all of three-quarters of a mile long and I think Dad covered it multiple times in that chair. He liked the wind in his hair, so to speak.
Dad was always able to move his head, always able to use his right hand and always, daily, able to make us laugh. For his family and friends, it was affirmed every moment we were around him that this man had been an incredible gift to us—when he was young and newly married to the love of his life at nineteen, to when he held his first child in his arms, to when he was always, always there for us without judgment or anger or anything but unconditional love.
ALS degenerated his muscles, taking away the strength that always filled his arms with hugs for us, but it never weakened his faith in God or the love that flowed through his heart.
Taking the ALS Ice Bucket Challenge and donating money to this worthy organization gives hope that other families will not have to watch loved ones deteriorate under the weight of this horrific, horrendous disease.
To my friends and family as well as the friends and families of everyone connected to ALS, thank you for finally, finally making “ALS” as understood as NFL and NBA. It’s so much more important.
*It’s very sad that the ALS organization did not maintain the momentum of this fantastic grassroots fundraiser.
Ice Bucket Challenge
The challenge meant a great deal to those of us directly touched by the tragedy of ALS.
I love and miss him so very much. And rats a$$ part still makes me laugh, we all thought we were in trouble but didn’t know why!!!
Joanne, he was utterly hilarious, wasn’t he? Right up until the end. Miss them both every day.
You’ve really a added some perspective to the ice bucket challenge that might have been lost by watching silly videos of your friends on Facebook.
Thank you for writing that, Ken. That first year of the challenge found me weeping a lot. Thinking about how much money the organization could devote to the patients and to research to cure ALS. It’s been encouraging to read where the money has gone and know it is put to purpose.
I miss him! Even though your mom and dad being homebound brought us all together, I am longing for those Saturday nights in your parents kitchen!
Ah, Mindi, I miss the Cousin Parties! It was always such a joy to get every body together and laugh and laugh!
Thank you Rose for sharing even more to help us understand ALS. Your father is still making people laugh through your words!
Gilbert would be glad to hear that, Jamie!
Well stated, Rose. By the way, when I think of your Dad, he is standing or sitting on the deck just like in your picture. Thanks for picking it.
Welcome and thanks for the comment. Dad did most of his “solving of the world’s problems” while on that deck!
That’s a good way to put it, Patty. Each time in life that we make something personal, we gain a greater understanding of “it” and what our friends are experiencing.
We think we understand something but when you tell about your dad’s ALS (which became your family’s ALS), it makes me understand even more. Thank you for sharing, my friend!