Three Stupid Letters

Growing up, we're taught all kinds of letter combinations: ABC, XYZ, ing, ies, etc...

Once we begin school, we learn how to read and write. Three letter word combinations are a staple in the classroom: Dog, Cat, Yes, Mop, Mat...you get the drift.

In all my schooling though, not once did I encounter what would end up being a 3 letter combo that would forever impact myself and my family. Never once had I thought that combining the letters A, L and S would cause such damage. I mean, it's three stupid letters...what kind of an impact can three little letters make?

To be honest, I had heard of Lou Gehrig's disease but had no idea what it was. I had no clue that it was the same thing as ALS. Why would I? No one I knew had it so it basically didn't exist in my world. I knew all about breast cancer and heart disease because those were common place in my family tree...but ALS? No way.

I had no idea that ALS stood for Amyotrophic lateral sclerosis...I can barely say it let alone know anything about it. I had no idea that those three little letters put together are basically the grand-daddy of all diseases. Now I'm not saying that cancer isn't horrible or that AIDS is a cake walk. I'm saying that now that I know what those three damn letters do to the human body, I'd rather have anything else.

ALS is a neuro muscular disease. It's progressive and there is currently no cure. When you're told you've got ALS, you've been handed a one way ticket for the worst roller coaster ride ever designed and once the ride is over, you exit into the universe on your soul's next great journey...leaving behind a family that is keeled over with nausea because they took the ride along with you.

ALS starts either in the upper or lower motor neurons. That starting point usually has a part to play in how this disease will progress for you...and from what I'm told, you'd rather not have it start up top.

Symptoms vary and everyone presents differently...but the outcome is always the same. After your muscles start to wear down, you slowly begin to lose your independence and your dignity. It seems that once you get used to the body part you just lost function over, a new one springs up the following day. You'll lose the ability to walk, to use your hands, to go to the bathroom by yourself or to shower alone. At a certain point, you'll notice that eating and drinking becomes more difficult as you begin aspirating food when swollowing...Bring on the feeding tube!

Once your ability to eat goes, you'll be fed by a tube that is hanging outside your body while attached to your stomach internally. Depending on where your disease began will probably determine when your ability to speak will end...but that's inevitable too.

Once everything has stopped working except for your lungs and your heart, you are basically a soul stuck in a body that is already dead. You can feel pain. You are aware of your surroundings but you can no longer communicate to those around you. You are feeling your death and your loved ones are left guessing what it is that you need when you try to blink your eyes for help.

Most ALS patients die of respiratory failure or of pneumonia. Basically, you suffocate to death and are fully aware of it...feeling everything. You are captive in your body until your body decides it's time to quit.

Most ALS patients die within 2-5 years of the onset of symptoms. Some die within a year. Some have managed to beat the odds and survive longer. The bottom line is...you're gonna die and it's not gonna be pretty. Not only will you suffer, but so will your family as they watch you leave a little bit each day.

So why the hell would I know anything about those 3 letters? Because those 3 f**kin' letters are currently breaking my heart as they take a little of my father away from me each and every day.

So if I'm living through this right now, how do I know what the end will look like? Because I've seen the face of this devil before. I've seen it take the life of a young, handsome man. I've seen it break down a family. I've seen it take the sparkle out of people's eyes...because before there was ALS in my father, there was Warren...

My Father's Hands

When I was a little girl, a mischievous one at that, there was one thing I feared: my father's hands.

They were strong. I can still see the large veins and the gold watch that he wore on his wrist day in and day out. I can still feel the roughness in his palms from the work he did around the house and in the yard.

So why did I fear them? Well...to say that I was mischievous is an understatement. I was a flat out trouble maker. Those hands were what kept me in line. The fear of getting spanked always loomed in the back of my mind as I did things I knew not to do. As vividly as I can see the details in my father's hands in my mind, I can also see the hand prints that they left on my ass when I got caught.

So why name a blog after something I feared as a child??? Because as I grew older, my thoughts surrounding those strong hands changed.

Those same hands that spanked me when I got out of line were also the gentle hands that held me when I was first born. Those hands held my own when I crossed the street or entered a crowded room. Those hands put mecuricome and bandaids on my cuts and they hugged me when I cried. Speaking of crying...here I go.

Those hands patted me on the back when I succeeded and held my chin up when I failed.  They rubbed my feet when I was sad and they clapped the loudest when I shined in the spotlight. They held video cameras to record me singing until they shook but they never laid the camera down.

Those strong hands opened bottles and lifted heavy things for me. They killed the spiders I was so terribly afraid of.

Those hands trembled as they gave me away in marriage. Twice.

Those hands that I feared most as a child were one of the first to hold my first born son. I remember watching and noticing how gentle they were with their first grandchild. Those same hands helped me raise my son the first three years of his life when I was alone. They changed diapers and they walked a screaming baby around the house for hours on end. They held my son as they napped together and they were there when he took his first wabbly steps.

When I look at my father's hands now, I'm reminded of The NeverEnding Story: a movie from my childhood. In particular, I'm reminded of the scene where the big rock creature is staring down at his hands and he says something like, "These hands. These big, strong hands." I can still feel the grief coming from that creature as he stared down at his enormous hands that couldn't prevent his friends from dying.

So whythe hell do I think of this random movie and this completely random scene when I think of my father's hands??? Because I know there are times when my father looks down at his hands and thinks the very same thing. My father is that grieving giant rock guy whose hands were once strong enough to do anything.

My father's hands have always been a symbol of strength for me. They could do anything. They could fix anything. They could make anything better...

But that was before ALS came and took it all away.