Now That's Funny

Sean and Family Visited Us Recently

The world is a crazy place these days, add in the holidays and ALS and it just makes for a stressed out time of year. Lately, I've been feeling my annual mixture of longing for people who've passed and wishing ALS wasn't part of our story. As much as I love the holidays, I always struggle with a mixture of feelings. However, there are plenty of things to enjoy and be thankful for throughout the holidays; grandchildren, Jake, pumpkin spice, egg nog, Christmas music, and decorations, to name a few. Luckily, I generally snap out of the negative feelings pretty quick.

I was talking with my sister, Denise, and we were having a sad, heavy discussion. I do, on occasion dive into black holes. I think we both realized we were being a bit gloomy, so Denise asked how's the Christmas decorations coming along. She knows I have a bit of an obsession for holiday outdoor decor. I told her, "It's all good, I've got Rudolph the Red Nose Reindeer playing in the window, just about every inch of the front and side yard lit up and I'm hoping to put out the last of the holiday figures this week. I paused and told her, "yeah for a brief moment this week, I stood in front of the house admiring my decorations and thought, "wow, you've really gone over the deep end this year."

Denise laughed and reminded me that I was talking to a woman that is collecting little holiday birds from Target and is now nearing 20 birds. She tags and names each bird. Honestly, they are pretty cute.

 "The Tweets" Aspen, Sierra and Whistler - Denise's Birds

It was such a wonderful moment of release... the conversation turned pretty quickly to our dad at Christmas. He would take the family out to the woods to chop down a tree. He had an incredible knack of finding the most disfigured, sad, sorry looking tree. In future years,  Patrick would label dad's tree selection "the Charlie Brown tree." We all looked forward to seeing the tree each year.

I am reminded of the power of laughter in difficult times. It helps us to cope and with ALS, reminds us to laugh at the absurdity of it all. A few years back in a support group meeting, there was a moment of levity amongst caregivers, honestly I don't remember what was said just that it was funny. I remember a new caregiver after the meeting complaining that laughing was not appropriate and that ALS is a very serious disease. I thought about this gentleman many times over the past few years wondering how he's doing, he never returned to support group. The truth is he's right, ALS is a very serious disease. What he failed to recognize was that everyone in that room knew that. We don't need to be reminded, we know how this disease progresses, we know the statistics, and frankly we know the outcome. But those brief, wonderful moments of laughter make a serious diagnosis bearable.

Some of the funniest stories I've heard come from ALS caregivers and patients, as strange as it may seem. One of the most stressful events for me, in this journey, was learning to use the Hoyer lift. I felt very overwhelmed psychologically and it was a struggle to figure out a process. It drove me to tears a couple times. Patrick has a great sense of humor and knows when I'm stressed, so at one point during this process as he's dangling from the sling, butt naked, he yells to me "take a picture for the blog." Honestly, in the moment it wasn't that funny, but afterwards hysterical.

Elevators with a power chair are a bit of a challenge. The doors shut too quickly for a disabled person to get in (they need some kind of delay system), and often they are shaped incorrectly. There is an elevator in Patrick's doctor's office that is a pain in the arse. It shuts quickly and is shaped rectangular making it necessary to turn in the elevator. As the disease progresses, it gets tougher and tougher for ALS patients to control their power chairs - yeah watch your toes. Before Patrick turned over controls to me, which he still hates, we had an "incident" in this elevator. In addition to the weird shape, the building decorators thought to put a "painting" in the elevator that stuck out from the wall.

Patrick was getting in as tightly as he could, allowing me to stand behind him, when we heard a ripping sound. I wasn't sure what the noise was from, but as he continued to get his chair adjusted we heard more and more ripping noises. I finally noticed that the "painting" was dangling off the wall by a piece of Velcro and stuck on the back of his power chair. When we arrived at our floor I casually velcroed it back to the wall, smoothed over the tear which was pretty good size and we both started laughing. You gotta laugh at this stuff. Come on, who thought having a painting stick out 2 inches in a medical elevator was a good idea. Now don't worry I don't think it was a Van Gogh or Picasso, so no masterpieces were damaged. 

Humor and laughter is found daily in our lives, here are a few of the things that made us laugh recently...

This is Elizabeth, our youngest grandchild. Don't be fooled by the cute face, this one's trouble. Recently, she went through our bathroom cupboards and found feminine hygiene items, removed the tape and stuck them around the bathroom. -- Not sure what the plan was, but she was busy.

Elizabeth

Jake loves the Christmas tree, he disappears during the evenings to the front room to sit and stare at it. He moves from couch to couch.

A few years back our Elf on the Shelf, Fred disappeared. So, Jack Skellington now makes his annual appearance - he's got a bit of an attitude.

Here are this year's outdoor decorations, still a work in progress...

No, you will not find a photo of Patrick in the Hoyer lift - I do have limits.

To you and yours Happy Holidays & Merry Christmas! Wishing you a peaceful 2018, in which we all strive to be our best selves.