I’ve recently added this little sunflower logo to my sidebar:

After being diagnosed with Amyotrophic Lateral Sclerosis, a woman named Shirley noticed that there was no symbol for ALS awareness; nothing like the pink ribbon for breast cancer awareness. So she proposed the sunflower as a symbol of hope, grace, and dignity.

Shirley explains: “The sunflower stands tall and strong, ever hopeful and ever reaching higher.  Sunflowers grow in clusters and support each other as they grow, just as family, friends and community offer support to those who live with ALS.”

Most people don’t seem to know much about ALS unless they have personally known someone affected by the disease. In fact, most people have a rather blank look when they hear the term “ALS” until I tell them it’s also called Lou Gehrig’s disease.

I didn’t know much about it either. Years and years ago, I remember watching an old black and white movie about Lou Gehrig. This award-winning movie, made in 1942, was called Pride of the Yankees, and starred Gary Cooper as the famous pro baseball player. It was the only reason I’d ever heard of this disease — until my dad started having some odd medical issues that caused him to have a bit of difficulty swallowing, and friends and family began to notice that his speech was slurred. ALS was mentioned as one of the possible causes, but it seemed more likely to have been something like a mild stroke. None of us, not even the doctors, it seemed, wanted to think of ALS as a real possibility.

Now, it’s two years later. After multiple specialists and countless tests, my dad has recently been given the diagnosis of ALS.

In reality, nothing has changed with this diagnosis. It’s still just a matter of dealing with whatever issues come up. There is no way to know how this may progress. Right now, my dad still lives in the mountain, splits wood for the stove that heats the house he built by himself, hikes several miles up his mountain nearly every morning, and rides his Harley-Davidson whenever the weather is good. Last Sunday, he spent the entire day skinning a 250-pound black bear (shot by a friend) to make himself a bear skin rug.

But he can’t talk anymore. I never thought about it until all of this happened, but it makes me very sad to think that I won’t hear him call me silly nicknames or make the funny noises he always used to make.

And he can’t eat anymore. He got a feeding tube a few weeks ago because he was having so much trouble working his lips to be able to drink, but he was still able to eat a bit of pureed food. Now he can’t swallow at all.

Humor me for just a moment, and try to wrap your mind around all the implications of no longer being able to speak or eat or drink.

The harsh reality is that if this is indeed ALS (and there really is no reason to believe it is not), then at some point the disease will begin to affect the muscles in his extremities. Not an easy thing for anyone, but particularly not for a man as stubbornly independent and physically active as my dad.

Walk to Defeat ALS is coming up later this month but I’ve decided not to participate in it this year; my dad has not come to terms with this diagnosis, so I don’t want to make a big deal of fund-raising and such right now. I’m only writing about this because he doesn’t have internet, and doesn’t read my blog. When I do write more about this in the future, I will do my best to find a balance of being real, but respecting his dignity in regards to what I share.

If you’d like to find out more about ALS, or if you’d care to make a donation that will go towards research and awareness, you can do that at the ALS Association website.

And if you’d remember my dad in your prayers, I’d appreciate that greatly.

Jamie

Wife, mom, J-ma. Introvert who enjoys good books, sunshine, and authentic conversation. Often seen with a steaming mug of tea in hand – unless it’s lost yet again in the microwave. Read more »