It would appear that my mother’s disease has taken another unexpected hard left turn. To my knowledge it began yesterday morning when I went to pick her up. Instead of her perky self she was sobbing uncontrollably.
The nurse told me “she just started crying and asking for you. We don’t know why she’s so upset.”
Sobbing, her face bright red, I got her to my car, stowed her walker in the back seat and got behind the wheel.
“What’s going on?” I asked.
She looked me dead in the eye, terror shaping the wrinkles of her face.
“Do I have a nose?” She said.
I have an awkward smile and tapped the end of her nose. “Yeah. Right here. Don’t you see it?”
“I don’t have any legs.” She said.
“Mom, you do. Look. See,” I pat her knee, “you have legs.”
“Those are someone else’s.”
“I don’t think so.”
“I’m dying!” She sobbed harder.
“Mom, you’re not going to die.”
I put on some Patsy Cline and drove to Starbucks to get our drinks. As the time passed she seemed to calm down. And stayed that way most of our time together. It wasn’t until the last hour when it all started to derail again.
She started rotating through a series of three stories all in the same breath. One involved her dying and having no legs or toes. The second, was her owing someone money. She didn’t have the money to pay them. She has to pay them.
The third, was when she turned my dad into a villain. He was a womanizing wife beater in her tales, which are nowhere near the truth. My father had his demons but he would and could never do those things.
I dropped her off back the home and she sobbed in even as we pulled into the parking space. “I have to be honest. I’m a Christian.”
I rolled my eyes but I had no idea what this was referring to.
Get her back to her room and she’s calm and cheery.
The next day, Sunday, the home calls me and tells me that she is inconsolable and keeps talking about having no legs. They’re concerned that she’s in pain and they don’t know. So they send her to the ER. They run all the tests. She’s healthy as a horse. Their diagnosis for this little escapade is that her dementia is progressing.
Well, no shit.
I’m curious what my visit on Tuesday will consist of. My husband (and I tend to agree) think someone may have doubled up her meds or got them mixed up with someone else’s. We think that only because of how quickly it came on. But then, when I think of how this all started it wasn’t a slow progression it was just one day she was talking absolute nonsense.
The poetry that happens in life is chilling sometimes. This song is one of those moments for me. It is absolutely beautiful, and the lyrics are… I will post the English translation below.
After my husband had his weight-loss surgery, he was invigorated to better himself physically. He started putting effort into the way he dressed, skin care routine, and even started to go to the gym daily. In that vein my husband had gotten it in his head that he wanted a facelift. He longed for a more prominent jawline and chin. He has a little one but mostly his face goes right to neck. This is a physical trait that runs in his family. His grandmother and aunt have this facial feature. As with most things he becomes obsessed with, he did his thorough research to find a place that could and would do the surgery at a low cost but with optimum results. That search brought him to a surgeon in Tijuana who was highly awarded and recommended.
After a photographic consultation, he scheduled his appointment and paid a deposit to hold his spot.
Then Covid happened.
He was forced to stop going to the gym and his surgery date was pushed out 6 months to allow the global pandemic to get under control. Oh, how optimistic we all were.
During that time I worked from home and he met and brought Tony into the fold. Overall pretty good times.
The day of his surgery we drove down to Mexico. The entire time, both of us had this overwhelming sense of dread. It draped over me like a cold, wet blanket. My stomach was a tight, softball ball sized knot. I couldn’t shake the feeling, and it only got worse as the day went on. At the time, I chocked it up to me being nervous about dropping him off at the hospital and crossing back over the border on my own. I’m sure I would have messed it up or been kidnapped. I mean, I’m so abductable.
Then there was the moment when he tripped on the cobblestone sidewalk and slammed, chest first, into the path. I could barely pick him up. At the time, whenever he fell it just freaked me out and filled me with so much anxiety. (It still does.) Luckily he fell right outside a farmacia, so we purchased some stuff to clean up the few scrapes he acquired in the fall.
After that, we went to his appointment and then immediately checked into our hotel. Covid restrictions were in effect, and I just remember walking through a mat SOAKED in sanitizer. I also remember, as we were dining in the hotel café, I made one cough, neglected to cover my mouth, and one of the servers looked at me with wide eyes and terror. What little Spanish I know does not include: “Don’t worry, I don’t have Covid. I’m not going to infect you.”
After dinner we returned to our room and were relaxing on the bed while watching whatever English television program I could find. For the life of me I don’t remember what it was. All I know was I was settling.
Charlie sat back perusing his phone and it is then that he perks up and says, “They updated my patient portal.”
“It says I have motoneuron disease.”
“What’s that?” I said, and grabbed my phone.
As I read the description provided by my google search results, every ounce of warmth drained from my body.
In a panic Charlie attempted to call the doctor, but got only his voicemail. It was 9 P.M. so it makes sense why he wouldn’t. So he shot him an email.
The two of us poured over more websites. I texted Josh and gave him the news. He read all he could.
“I hope this isn’t true,” he texted at some point.
The two of us started to cry. I snuggled up next to Charlie and held him as tight as I could. At one point, in a weird knee-jerk reaction, I ripped off my and his shirts and held him against my chest. In my death and dying class I had learned that skin-to-skin contact is the best way to heal emotional pain.
“I just want to go home,” he croaked out.
“Me too,” I had said.
We packed back up what little we had pulled from our bags and checked out. The front desk was confused but obliged. They ordered us a taxi and we waited out in the parking lot.
When we got into the car this song started. Through the entire length of our journey back to the border it played, setting the most somber note in the backseat. Neither one of us spoke. I couldn’t bring myself to say anything or even think. I knew if I put too much focus into it I would breakdown and I wasn’t about to be another statistic of some bitch sobbing in the backseat of a cab.
We crossed back over the border and hoofed it to the car in record time.
On the drive home, my husband made unnecessarily cruel calls to his sister and mother telling them his diagnosis. He delivered the news without any delicacy or social finesse. Neither of them broke down on the line, but we were later informed that both were devastated.
I drove the entire 4 hour drive home in about 3. When we got to our house we fixed ourselves some cocktails and hopped into the hot tub. We spent the rest of the night listening to music and getting unbelievably hammered.
The next night as Charlie and I sat alone in the hot tub, he looked me dead in the eye. Tears were running down his cheeks, his eyes red, as he implored me, “When the time comes, promise me you will help me go. When I’m ready.”
My throat tightened, along with my face muscles, as I hesitantly nodded my head.
When you were together with me, That light was celestial. What more could I ask for? I found the happiness.
Without notice, we left our paradise, and now your memory makes a shadow to my heart.
Today marks the month that you still don’t see me. You went, nothing more, You gave up on loving me, Oh, and how you hurt!
While I think on you, And in that I lost it, I would like to avoid To see me allowed me to love you, For to lose you, And you hurt me, Oh, how you hurt!
The bumps on the skin, They leave marks and after they leave. They go, they go, they go, But you broke me in two, And I can’t find repair.
Without notice, we left our paradise, And now your memory makes a shadow to my heart.
Today marks the month that you still don’t see me. You went, nothing more, You gave up on loving me, Oh, and how you hurt!
While I think on you, And in that I lost it, I would like to avoid To see me allowed me to love you, For to lose you, And you hurt me, Oh, how you hurt!
Go to be free and to be happy. Already give the same here. With me is someone I knew, It is a stranger and the pain let go.
Today marks the month that you still don’t see me. You went, nothing more, You gave up on loving me, And you hurt me, you hurt, you hurt.
While I think on you and in that I lost it, I would like to avoid To see me allowed me to love you, And you don’t know how you hurt, You hurt, You hurt, You hurt me, How you hurt! https://lyricstranslate.com/en/dueles-hurt.html
The beauty of this song is that it perfectly encapsulates the person it represents in my mind. It has this very high energy, happy beat that gives the impression that the lyrics encased match it’s tempo. When you really look at them they are not. They speak of constant struggle and strife while always maintaining an enthusiastic demeanor. But they’re sung in such a way that it tricks the casual listener. It’s only those who truly listen that will know.
Let us also not fail to mention that it is also an awesome song choice to play in Beat Saber.
Tony is someone who seemed to magically appear out of the ether. As if he was called from some mystical place to my and my husbands world. I had had no idea that he and my husband had been talking. It wasn’t until late one evening, as Charlie and I were relaxing in the hot tub, that he informed me that someone was coming over to join us. My skin prickled with excitement because I thought he was coming over for… uh… other reasons besides to have a couple drinks and soak in the warm water.
He arrived, stripped down to his birthday suit, and hopped in. We spent hours talking, and much to his and my husband’s dismay, I lingered much longer than they had anticipated. Half drunk at 2 in the morning I had to be an adult and get to bed. It was a work night, and unless I wanted a massive hangover it was best for me to skedaddle.
Reluctantly I went to bed… Then I woke up with a start and looked out the bedroom window and saw the two having a very intimate time. Upset I packed up some clothes and headed over to my mother’s to sleep in her spare room. My husband called to inquire my whereabouts and I said I just had to get out of there.
Tony left, drunk, because he felt like he had upset the balance and didn’t want to be involved in the drama.
After some thinking I realized why it bothered me so much. It wasn’t that I had seen them together. That is one of my weird sexual kinks. Why I got upset was, like I had mentioned earlier, I had assumed it was meant to be a group effort. Which it was not. There was a lack of communication on my husband’s part. Had I been informed, it wouldn’t have been a thing. I would have also gotten way more sleep than I ended up getting. This episode was merely something we could learn and grow from.
The next day I found Tony on Scruff and apologized. I told him that there was no hard feelings I was just drunk and being weird. I didn’t want this episode to ruin anything between him and Charlie.
It surprisingly did not.
He came over the next night and brought along his PS4. He had the whole VR set-up and we ended up playing Beat Saber, this ADORABLE little robot game, and one based around the Paranormal Activity movies. It was a blast.
Tony invited himself to one of Charlie’s appointments at Cedars-Sinai. It was the follow-up nerve test to see what change their was from February. As it turns out, there was a lot. The next appointment that Tony invited himself to was the one where the doctor casually dropped his diagnosis. However, my husband did not pay any attention. Because, when we read it a couple days later on his patient-portal synopsis we both had a breakdown.
That night Charlie, Tony, Josh and I all hopped into the hot-tub and drank. What else do you do when you’ve been given news that you have a terminal illness?
For lack of any term, I have stolen the one coined by the Mormon polygamists. Instead of sister-wives I call Tony my brother-husband. I would do anything for him. He very quickly became a huge part of Charlie’s and my life. And one I wouldn’t and couldn’t do without. Everyday I thank the universe for sending out the call, or answering it, and having him arrive.
As it turns out, he has been in our orbit, but as a secret shadow planet that only comes into view every millennia. He had attended many of the offensive comedy shows I had been in, he LITERALLY worked down the street from me (he and his work mates used to watch me bizarrely pull up into a parking space in front of their shop and smoke cigarettes) and he knows so many of our random acquaintances. That last one is common in a small town, though. So it isn’t that out of the ordinary.
I chose this song mainly because it was a repeated choice while playing Beat Saber in our old living room. (That and “Greatest Show.”) It also matches how I feel about him. He always has high hopes and is such an optimistic person. Always. Every once in awhile it cracks under the exhaustion of trying to maintain the show. But with a little intermission he is right back to it. The only thing in the song that doesn’t match is he is one in a million.
P.S. I will eventually delve into more obscure songs at some point in time. I feel like everything so far has been “Top 40” and I am better than that.
P.P.S. I will also eventually catch up to the proper order. I’m a blog behind in my goal.
There is something other-worldly about this song. The guitar intro trickles in like pixie dust drifting through the air. The shimmering specks land on the closed eyes of a sleeper and transports them to another place and time. It’s a bittersweet imaginary adventure where they enjoy the moment for what it is, but know that it won’t last.
It’s weird. This song takes me to a time when everything was very real, but life still felt like a dream.
My father had started to have trouble walking again. He had had this issue once before when he had been diagnosed with hydrocephalus, which is fluid on the brain. At that time, my husband and I were convinced it was because my dad was just fucked up on prescription pills. When he got out of surgery it was like someone had flipped a switch. He was walking and moving better than he had been before.
Fast forward 10 years and we were back to the same. This time it wasn’t as bad. It was basically just a stiff leg that was causing him pain. Oh, and the little thing of him repeatedly falling.
I accompanied my mother and dad on his doctor’s visit down to a specialist in the LA area. There they said they were going to do a spinal tap and test the fluid to see what was causing him this issue. They didn’t know then, but I am almost certain it was ALS related. There are just too many coincidences for me.
On the way back from that visit, I told my dad, “What do you want to listen to? Anything in the world, what would you want to hear?” He mumbled out “Jim Croce.”
I pulled up spotify and started playing the top hits, and this was the first one.
I may have heard it growing up but I don’t think I was paying attention to anything adults did. I was pretty self absorbed and really only focused on what interested me. A bluegrass/folk singer would be right at the bottom of the list.
What’s funny is I am a lot like my dad. I share with him an obsession with music and a particular habit of repeatedly playing the same song. There was a story of my father doing this with a tape while on a road-trip with my mom. He would listen through, stop it, rewind, and play it again. He drove my mother so nuts with this that she ejected the tape and threw it out the car window. I don’t know what song it was, but I just have this gut feeling it was this one.
The early Monday morning we had my mother’s appointment to confirm she was in the early stages of Alzheimer’s, I noticed some big bruises and cuts on my dads arms.
“What’re those?” I had asked.
“I fell two times yesterday,” he said.
I joked and said he needed to be careful and should I buy him a helmet? “Do you need a life alert?”
He chuckled.
I should have bought him a helmet. I should have given him a life alert.
That following Thursday morning, while he was using the bathroom, my dad fell and hit his head on the edge of the counter. He made it to the bedroom and from my mother’s COUNTLESS, gruesome retellings (complete with re-enactments) he called for help and began to seize. My mother’s idea of “helping” was running outside and literally yelling “help.” Not… dialing 911. And even when the school bus driver told her do just that, she rushed inside and forgot the number.
I’m pretty sure my mother’s disease will, in the end, claim two lives.
That morning I got a call from my dad’s cellphone but instead of his voice was a stranger’s. She told me that he had been taken to the hospital. I went to work as normal and then informed my boss of what happened. I got my mother and went to the ER.
He was braindead by the time we got to see him.
I called my mooch of a “step-sister” (it’s complicated) to let her know. She cried and told me to play (of all the bands my dad loved) Jim Croce for him. For a brief moment I thought she actually cared and could be a real “sister.” But then she began her grift the weeks following. Didn’t send flowers. Didn’t do anything. She was a “Hensley” in name alone.
We pulled my pop from life support and he was gone in seconds.
That following Saturday evening my husband orchestrated this little get together at a bar to celebrate my dad’s life. (This was also the first time Josh ever hung out with me and Charlie. He was uncomfortable at first, but because of the circumstances powered through.)
We hijacked the jukebox and played Jim Croce all night and drank all of my dad’s favorite spirits in his honor (peppermint schnapps and Coors.) I don’t think I have ever cried as much as I had that night. Nor do I think I have ever been as drunk. Good lord…
“Time in a Bottle” is a sad melody, but in the chorus for a brief moment there is a turn and it becomes hopeful and bright. I live for the chorus. I belt out the lyrics as hard and as loud as I can muster every time.
But there never seems to be enough time To do the things you want to do once you find them I’ve looked around enough to know That you’re the one I want to go through time with
Like life, the song is mournful for the loss of time, the microscopic moment we all get to experience it. It is loss, it is pain, but there is brief moments in that sea of yearning that are hopeful. They give us enough joy to carry on to the next chorus.
The Journal of a Jaded Josh 