He didn't die as a hero in the World Trade Center during the 9/11 attacks, but he is my hero.
He had ALS.
I've been thinking of writing about this for a few weeks now, because of the viral Ice Bucket Challenge. If you haven't completed, declined, or at least heard of the ice bucket challenge, you are probably living on some remote island (let me talk to you about a vacation. I need one) or you are a member of one of those uncontacted tribes (they really do exist.)
You people with your ice bucket fails though.. you need to be careful with heavy things.
The first ice bucket video I saw was Taylor Swift's. I had no clue at the time what it was about. Some kind of spontaneous water fight? It took me watching maybe 2-3 friends receive the icy treatment before I realized that the reason was to raise awareness about ALS and have people donate to the ALS foundation.
Sidenote. I am aware that not all of the money donated to the ALSA goes to research. The association funds administration, etc. as well as some side organizations. The only charity organization that I know that does not segment donated funds is here.
And as with any viral trend, it had its critics. But because of the experience my family and I had, I am very grateful for its effects.
Surprising, I thought, that suddenly people were aware of the rare disease that forced me to say goodbye to my best friend, my Dad, when I was fourteen years old. I was also surprised to see the number of people who mentioned someone related to them or that they knew who had passed away from ALS.
But maybe a few of the millions of people who were doused took the challenge without knowing much about ALS.
Amyotrophic lateral sclerosis is a rare neuro-degenerative disease in which the motor neurons that connect the brain and spinal cord to various parts of the body decline, and the muscles atrophy. Those who have ALS slowly lose voluntary muscular control, which progresses to paralysis. There is currently no reversal and no cure. One medication is available that can slightly slow the progression of ALS. There are many types of ALS, and each case is different as far as the sequence and rate at which physical processes decline (limb movement, fine motor movement, speech, breathing, etc.) I won't go into further medical terminology, but if you are curious, ALSA.org has a lot of good information.
Most often, people receive a diagnosis and have a few years to live as the disease progresses from earlier to later stages. With my Dad, we had a few months. This was merciful, since he didn't ever want to be on life-assistance machines.
In the beginning, we watched, though, as my dad had a harder time doing simple tasks such as manipulating his fork at dinner. He had difficulty picking up the tiny sacrament cup at church. I'll never forget looking at his forearms, and seeing where once was burly muscle, little ripples of nerves firing offhandedly. Maybe I understood what was happening, but not really. Not fully. I was only a little girl. My father had a subtype of the disease that caused him to lose neural connections in his frontal cortex. Not everyone has this form, as ALS is sometimes described as the "condition that takes the body while the mind remains intact."
But I am not going to spend a lot of words on what it was like watching my Dad have this disease.
Because:
I don't remember my father with ALS. Not meaning that I can't remember when he was sick-because I can. Oh, I can.
But when I think of him, I don't think of him with ALS. I think of him with his strong, muscular arms, his bright laugh, his brilliant mind, and his dedication to his family, the gospel, and his work. That's what defines him; that's who is is.
For my father's birthday this last July, I wrote a letter to him on this blog.
We share a birthday week -- our birthdays are only four days apart.
Usually for my summer birthday as a little girl, I would round up the neighborhood kids for a giant water fight in the front yard of our house. This included hundreds of water balloons, water guns, splash bombs, water games--the works. Near the end of the festivities, someone would always get the BUCKET DUMP. You know -- the water in the bottom of the bucket after the water balloon supply has been exhausted. Typically this was reserved for the person who had the birthday. I definitely got the bucket, several times. But sometimes we were sneaky, and we would get my dad. He had his jeans rolled up, running around with all of my friends, lobbing a balloon here and a water bomb there. It took two of us little people to lift the bucket.
SPLASH went the water all over his head and down his back, and we would laugh and laugh.
He did that challenge before it was even a thing.
Every one of you who have taken the bucket, YOU have done it for my Dad.
Thank you.
I included this picture in the letter to my Dad from July. But it just seemed fitting for this post as well.
Whether you have donated to the ALS Association or not, or you choose to support charities in other ways, (which is wonderful) the increased awareness is what I am so grateful for.
Some may say this was just another fad, or viral craze, that was annoying at best and got over quickly (but not quickly enough...) -- but it has been meaningful to me.
Because now maybe there are an additional few million people who won't say, "wait, what?" when I tell them about my Dad and ALS.
Dad, we miss you,
but we love you buckets and buckets.
Dad, we miss you,
but we love you buckets and buckets.
