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Saturday, March 17, 2007

My Dad Part 2 -- It's a Great Day

Part 1 -- Impact of Childhood Lessons

"Mommie told me in her letter today that you cryed because daddy was gone. Son that makes daddy sad & yet happy to know that you miss me, because I also miss you very much. I even got a few tears in my eyes when I read it. Anyway I do love you." (See pic at left.)
My dad had two heart attacks in his early 50s. So, when his unexplainable crying and laughing started, we thought it was unusual…but attributed it to something with his health and heart. I remember one night as we all were watching some funny movie as a family and he started crying. He couldn't explain it and we all looked at him like he was crazy. There were two things that happened to his physical body that made us know that something was up: Uncontrolled fasciculations (muscle twitching) and loss of muscle (like the little muscle that is in your hand between your thumb and first finger….his disappeared). Doctors tried for more than a year to try and figure out what was happening. Test after test. Go see this doctor, go see that one. It was in the summertime when my mom called me from the VA Hospital in Portland. “It’s not good news,” she said. After one final test where they stick needles in every single one of your nerves, they all came out “negative”….there was no nerve activity in any of the places they tested. “He has a motor neuron disease,” or Lou Gehrig’s Disease. Now, I don’t know if you’ve known anyone with LGD or not; but I don’t think, in fact I know, that we had no idea what horrible, wild times were yet to come. It is a disease that destroys all muscles in your body. But your mind stays intact. His arms became nothing but the skinniest pieces of flesh you’ve ever seen. The muscles in his neck…the ones that you use to hold up your head….disappeared. His head rested as low as it could, all fallen over to the side. He couldn’t hold his head up. And his tongue (don’t forget, it’s a muscle too) stopped working. He couldn’t speak the last nine months or so and he couldn’t eat the last few months either. It took him, literally, hours to force a bowl of applesauce down. And it was always done with choking, spitting up, and gagging. He would get the most scared look deep in his eyes. And we all stood around, trying not to stare, as he gagged and couldn’t breathe….day after day. We finally had to get a suction device to get the food and excess saliva out of his throat. I spent many an hour, as did my mom, holding his head up with my left hand while I ran the suction tube down his throat….trying to help him….desperate in our attempts to make him comfortable. One day, I watched him struggle to use his electric razor. I asked him if I could help him and he nodded “yes.” So, just like the suction device, I held his head up with one hand and ran the razor across his sagging, gray face with the other. This became an afternoon ritual….I would come home from work and the razor would be waiting. He would hold it up to me, smile, and I would kneel down next to his chair until he said to stop. Sometimes, many times in fact, it’s the smallest of gestures that bring the greatest rewards.

And I’ll never forget the first time that he was not able to speak to me on the telephone. I was traveling the summer of 1993.….in New Jersey that particular day…..at a Ramada Inn just outside of New York City. I had finished an evening concert on the 4th of July, his birthday. I called home that humid evening from my hotel room. Everyone in Idaho was having a picnic as we always did for his birthday. I knew that there would be cake, home made ice cream, balloons….the whole lot. But this night, my mom said, “Your dad isn’t able to speak any longer.” It had been coming on for a while now. It had begun with him sounding like he was drunk….slurring his speech. In fact, a customer of his had mistakenly thought that he had been drunk in the grocery store where he worked. And she had reported him to the store management saying that “You’ve got a drunk man working in the meat department.” So, he retired. To this day, I try not to cast judgment at situations I know little about. So, back to my phone call from New Jersey: My mom held the phone to his ear and told me to start talking. And I did. I told him how much I loved him and what a good time I was having on my concert tour. I told him that I missed him. And, of course, I said “Happy Birthday.” All I could hear was his grunting….trying his best to formulate a word or two. But, it didn’t happen….ever again. From then on, he wrote everything down. And I still have those journals today. All of his day-to-day conversations. I cried and cried that night….as I am today as I write. It was one of the most horrible nights of my life. I would never hear his voice again. Except in the recesses of my heart and mind.

My dad took my brother and I fishing several times in the last year or so. We would pile in the Jeep and leave town early, stopping for breakfast an old dirty diner alongside the freeway. After breakfast, we continued on, north of Weiser, Idaho, along the Snake River to his favorite spot. I hated fishing. But it didn’t really matter. The Union Pacific trains would roar by us at more than 70 MPH as we sat along the river, lines in the water, waiting. I remember my dad slipping and falling as he made his way down to the river -- his legs and arms had begun to lose their tone and strength. Stumbling became a normal part of daily life. So, here we sat. Me watching while my brother and dad fished. The ugliest catfish you’ve ever seen coming up out of that river hooked on the end of the line. My dad would unhook them and hold them up for the whole world to see and a smile from ear to ear on his face. He was totally content. The day was complete. The rain began and we piled back into the Jeep and drove down the dirt road a ways. No boats today. Too cold and windy. We sat there in the rain, running the Jeep to keep the heater going. To this day, one of my most favorite of life’s moments was about to happen, and I didn’t even know it. You know, they can come out of anywhere. At moments of least expectancy. Dad reached into his inside coat pocket and pulled out two identical light blue envelopes. One with my brother’s name on it and one with mine. They were identical cards….and they were birthday cards. Neither one of our birthdays were close. Dad had crossed off all of the birthday references and had hand written in “great day.” The card went like this:

“Love on your great day and always. Though you’ve always known we’re interested in everything you do, maybe you don’t realize, Son, how proud we are of you. So, this seems like a fine chance to combine a little praise with these loving great day wishes for the happiest of days.”

And then, in his own handwriting, he had written: “This is just for you because you are such a great Son and you mean so much to me. I love you. Your Dad.” He had enclosed $200 in each of our cards. We left the river that day with tears in our eyes and “great day” cards in our pockets. I still have mine. You'll see it in the picture below. And, you know what, my dad was right. It was a great day.


one3y3 said...

Such a sweet moment. I teared up reading the last paragraph.

Shaney said...

Lewis...You are an amazing man & it seems so much like your Father...It is terribly sad that such a wonderful person had to endure such humiliation through illness...I could never imagine how it was for your family, especially your Father...But your memory of him is beautiful & enchanting. I shed a tear today sharing your memory...Sad yet wonderful of you to keep him so close to you...xoxox

Stacey said...

What an incredibly touching story. So glad I found it. Thanks for writing it so beautifully.

SlyD said...

*wipes tears away* The relationship you had with your dad is just beautiful, Lewis. It's great that you still have all those loving memories... and thanks for sharing them with us.

Peter said...

I've choked up after reading both praises to your father.

My father is still alive getting 84 in a couple of months. Ever since we stopped working together we got closer.

JoeL said...

Incredibly touching Lewis.

Thank you for sharing this wonderful world of yours with us.

CTOcity said...

Wonderful Lewis. I totally understand your emotions and feelings as you went thru all of this. I took care of my dad too when we found out he was ill with cancer. When my dad stopped talking due to the cancer reaching his brain, that was the true day I lost my dad... even though he lived 3 more months.

You are not alone and I know you will be rewarded for the love you showed your dad.

Hugs... Chris

dbv said...

that's beautiful and brought tears to my eyes!!! i watched a friend's husband waste away from lou gehrig's and it's just the most awful thing, i can't imagine what you must have gone thru... big hugs!!

John said...

That was beautiful. Thank you.

DEREK said...

this was one of the most touching entries I think I've read in your blog, and yep I teared up. My sister and I have this thing about sending each other things that try and make the other one cry. What a special day that sounded like it was.

Matt said...

Lewis, I just want you to know I've been reading these posts but am honestly unable to comment. Many of the emotions you have touched on ring loudly true with me, and it brings back the difficulty in dealing with my own Dad's illness from so far away. Even though he died over a year ago, there are a lot of things that I think I still have to deal with, as evidenced by my reaction to your posts.

These posts are beautiful. Exquisitely written.

The Thunderbird said...

I came to copy your story so that I can blow it up to larger font (left all my eye crap at work).

Added a special link just for you to the phrase "lovely turkish hottie" in the "He Carwled into my Dream" post.


Nathan said...

Aw shux :(

I don't know what to say, but I wish I could give you a great big hug.

K-A said...

That was difficult to read, but I am glad you wrote it. I have a feeling you are very much like your father.

You are correct; it truly was a great day.

Robert said...

Love is everything.

knottyboy said...

So beautiful. You can see inner beauty and thoughtfulness even when it was such an effort to be that way.
Thank you hon,
p.s. pass me a flippin' tissue will ya.

Biby Cletus said...

Nice post, its a Super cool blog that you have here, keep up the good work, will be back.

Warm Regards

The Snake River

The Patient Connection said...

Research Blog on Locating Support for Motor Neurone Disease Sufferers

We at The Patient Connection are currently running a research blog or online discussion on the subject of support and information resources for Motor Neurone Disease Sufferers. As well as the impact of the condition more generally

In particular we are interested in your experiences during and after diagnosis.

We would love it if you could share your story or just post useful resources for patients, carers and family members

If you would like to join us please go to


Thanks and please remember your opinion does count.

Best wishes

The Patient Connection

PS Please email me if you have any queries

KellyL Hales said...

It is so wonderful that you have those treasures, the letters and journals, so you can still hear your dad's voice. xoxo