Skip to main content

Funny About ALS

ALS is a devastating illness to be sure.  It robs us of the use of our own appendages; arms, legs and our heads (but not our brains).  It robs us of our ability to speak and even to breathe eventually.  What possible humor can come from such horror?  The inevitability of our demise hangs over our head.  What's funny about that?  Plenty, depending upon one's point-of-view.

Early on, I had been warned away from ladders by my ALS buddies at the support group and agreed to leave the climbing to Rod.  However, auto-pilot kicked in and in my mind, I was able-bodied once more.  I wanted to add paprika to my eggs and automatically grabbed my wooden 3-step Ikea stool.  Bing, bing, bing up I go and freeze.  "Honey?  Will you come help me down?", I warble.  He was not amused.

At Christmastime an intestinal flu bug made the rounds and I caught it.  For days I was reduced to a state I can only describe as infantile.  Stuff was rapidly coming out of both ends.  My weak-stomached husband performed masterfully and a few days later I was better.  However he was hit hard with the same bug yelling at me to stay away lest I get it. The flu weakened my already tortured muscles and all packages were stronger than I.  Many futile attempts were made to obtain mild, easily-digestible food to no avail. I did discover an opened box of Aplets and Cotlets beneath the Christmas tree and ate them all.  Hours later I was hungry again.  The thought of prepared food made me nauseous and I called my sister several miles away. She offered up pizza, McDonalds cheeseburgers, anything I wanted.  My choice? Cheese sandwich, cold, pitiful, and bland left at my quarantined front door.  Maybe that's only funny to me.  I am partial to gourmet fare.

Wanna giggle?  Throw me a stick of string cheese or a Ghirardelli chocolate square.  I love the stuff!...And don't open it.  I've spent an hour...biting, attempting to tear it open by shear force of will.  Discovering an ulu, attempting to cut into the plastic using my "good" left hand, mushing up the cheese, barely surviving with all fingers in tact and no blood shed.  Imagine my husband's face when he discovers my abandoned project.  Incredulous and horrified!  THAT was the look on his face.  Now that was funny.

Easter I made like an Easter egg in my white, pink, and fushia-swirl cardigan lying atop a bed of green.  During a foray into my yard to admire the progress being made on my newly-built wheelchair ramp, I fell over, (BLIP) landing on my left side, hip firmly embedded in the green pile of a mossy carpet, left arm extended.  No way to get up and nobody to hear a plea.  Nothin' to do except wait to be discovered.

Some days I type using a modified method as some fingers work on my left hand and only my middle finger works (kinda) on my right.  (Well, it's not like I can flip anyone the bird.)  Recently, one of my fingers on my right hand has developed a demented mind of it's own and upon painstakingly pecking-out two paragraphs, Shazam! paragraphs disappear.  WHAT?!  So, I do it again even more painstaking and mindful...Shazam!  Again.  Are you kiddin' me?  And a third time...slower still.

Let's just say that I am currently embracing speech recognition technology.  Maybe ALS does affect our brains...I'm incredibly stubborn.



Comments

Popular posts from this blog

Kate

I think about my friend, Kate Struby, who died from this horrible disease in 2013. She lived here at Bailey Boushay House before I did. I reached out to Kate online through FaceBook because I loved her photograph with her head thrown back in laughter. I also loved her posts. I guess I just loved her spirit. I got to finally meet her one month before she died. I happened to be at the University of Washington Medical Center for my quarterly appointment when I saw her FaceBook post. She was awake and in the medical ICU. She was a mere few floors down. I would not be stopped. Relativeor no, I would meet my FaceBook friend. Thank God I did. I rolled into the room to find a beautiful, ethere.al woman flanked by two friends. Although it was an impromtu visit, she said she knew me immediately.I was in awe of her with her fiery spirit despite the ravages of our shared disease. She, unable to lift even a finger, lifted my spirit.

Disrespected, Again...

It's 10 pm, I've accomplished nothing to speak of. I watched one movi, "The One I Love", a Twilight Zone-esque story on a couple trying to reconcile. And, one television show, "Running Wild with Bear Grylles" guest starring Channing Tatum. OMG!!! And, I ate some dinner. Tonight was chicken gumbo, chili, cornbread, oatmeal cookies and ice cream. Not much of a day. Nope. I was looking forward to my husband's visit but when he called at 5 pm, he mentioned that he was in Ritzville (by Spokane) working on his trailer with Darryl (the other jerk that took my cruise without me).  I do not begrudge my husband having a life away from me. However, as I keep telling him, I don't appreciate being purposefully left out of loop and disrespected by being left waiting for his disrespectful ass. Any questions?

Gratitude For Reading

People are reading my blog! I cannot express my gratitude enough. My heart is soaring! Before I got ALS, it was a minor interest amongst many varied interests. Today, I am unable to physically participate in many of my prior interests, like motorcycling, photography, knitting and other handicrafts, hiking, traveling, painting, drawing, going to the gym, working in the garden, doing housework, canning, and cooking gourmet or ethnic foods. Therefore, I am more focused on the ones that are most accessible to me, such as reading via audiobook or e-book, television, movies, meditation, music appreciation, and writing. Like the blind man who's sense of hearing and smell is heightened, I'd like to think my crippled body has made me more attuned to things more on the spiritual and sensual level. Initially, when some members of my family read my blog, they chose to focus on what they viewed as negative. The feedback I got was harsh and personally critical. .I was told that I was ...