dying

February 22, 2022

The Soundtrack of My Life – 7 – Time in a Bottle

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.

February 15, 2022

The Soundtrack of My Life – 6 – I’m Not Okay

This song is my go-to emo ballad. I scream it at the top of my lungs until every ounce of breath has left them. I’m left gasping for air but it’s well worth it. No song evokes my inner rage more than this. The sudden build up and explosion of music brings to mind a big wheel perched at the top of a steep hill. With an unexpected push, I’m launched forward. My destination is only a hope as I’m hurtling downhill. The plastic pedals and wheels spinning uncontrollably. All I can do is keep my legs elevated out as not to get my pants knotted and twisted. Or, worse, have the skin stripped from my shins. The intro perfectly encapsulates the trajectory of my life from this point.

In a roundabout way I started to tell these little stories linearly. I hadn’t intended to do that, but that’s just the magic of writing sometimes. It takes me where it wants to go. And I blindly follow.

For a very brief moment my life was good. My husband had I had worked out our relationship. I met josh. I had finally passed my real estate appraiser’s exam and received my license. And I graduated Summa Cum Laude with my AA. My outlook was nothing but clear skies. Then began the downward descent.

I was having some pain and decided to go to the doctor. They did a CT scan of my abdomen and it was there that they noticed I had an enlarged prostate. They informed me of this little fact as I was on my way to the eye doctor for what turned out to be a bad case of pink eye. All-in-all it was a lovely day.

They sent me for bloodwork and more tests. At this point I had already decided that I had prostate cancer. What else could it be? I told my husband and boyfriend that I had no desire to treat it. It could lead to erectile dysfunction and I wasn’t about to live that life. Hard pass. (That joke was for us.) Both of them protested. It is one of the most treatable cancers and if left alone could spread to other parts of the body and turn into much more deadly forms of the disease.

After a rough couple months the final diagnosis was I just have an enlarged prostate. Along with an enlarged spleen. Two things no one would ever want to be big. I guess I just have all the luck, y’know.

Crisis averted! However it absolutely opened my eyes to the fear of disease and made me hyperaware of respecting someone’s wishes.

About a year after that my mother began acting very strange. It started with her speech. She was unable to say certain words and would explain how she could see it in her mind but couldn’t verbalize it. We went and had a brain scan done and the doctor ruled it a non-issue. The nurse practitioner recommended memorizing and saying bible verses. (I rolled my eyes so hard at that suggestion.)

Then my mother took a hard left turn. She talked about the walls of the house leaning. The floor feeling wet. And she would not stop shuffling papers. The real moment of absolute horror was when my mother sat and read and re-read the same single piece of paper for 30 minutes. It occurred to me that something was very, very wrong.

We went back and did another scan and in that time she had 7% brain mass loss. An average person with Alzheimer’s is usually at 3%. The next time we saw the doctor it was conclusive. She was in the early stages of the disease. The nurse whispered it to me while my parents sat at the other end of the exam room. Why I was the only one she bothered to tell is beyond me. Don’t you want to tell the person who has it?

Since then it has been every nurse or doctor whispering shit to just me and not her. “She can’t live on her own.” Yeah? Tell her that! My mother doesn’t believe me when I tell her stuff. Of the few things she can say without any trouble is: “that’s what you say.”

I remember the night my mother’s diagnosis became undeniable. I put this song on and screamed it all the way home, crying. All I could think about was how she would have all of her memories, her words, her identity ripped from her. In the end she will basically die because her body will have forgotten how to live.

But you really need to listen to me
Because I’m telling you the truth
I mean this, I’m okay! (Trust me)

December 2, 2021

Midnight Memories

So to set the scene I recommend listening to “Blinding Lights” by Loi. It’s probably the best version of the song and the tone of it completely encapsulates the memory I’m going to share.

The first thing my husband ever said to me was through an instant message on AOL. He let me know that he and Diego were still together and not knowing who he was (and being the annoying teenager I was) I continued on the conversation as if I knew him and what he was talking about. I finally dropped my charade and asked him who he was and it was then that I added him to my buddy list, cchuck77383. From then on I would message him whenever he came online because I just knew things with him and Diego were on the way out.

This all happened at the very end of September 2003 after an abrupt break-up with my third boyfriend. (Who has since passed of stage 4 cancer.)

I was taken by him (my husband) because he happened to share that my ex wanted him, but my husband was not even remotely interested. This made cchuck77383 immediately attractive to me.

I wasn’t a good person then and I know that now… but regardless of what got me to meet with this man doesn’t matter now. I am still here.

After things with Diego fizzled out he agreed to meet me one late night at a Denny’s.

I put on “sleeping beauty” in my bedroom, snuck out my window, and drove across town to meet this stranger I had only ever spoke with online.

He didn’t tell me what he drove, but I knew he had arrived the moment his white mustang drove past me. For the next hour or so we sat in a booth talking, while I watched him nervously spin his silver Motorola flip phone, twitch his nose, and run his index knuckle up his phantom mustache.

For whatever reason he liked me and invited me over to his apartment downtown to watch a movie.

The first thing we ever watched together was Philadelphia. Which, if you don’t know, is the story about a man dying of AIDS. He swears now he had never seen it, but I remember him telling me it was a good one to watch. However he had also just started collecting DVDs at the time and it is highly likely that he hadn’t. I tend to rely to heavily on my own memory. And I am (at times) wrong.

That early morning, when the movie had ended, he walked me to my car and kissed me, wishing me good night. I drove away thinking I would never see him again, feeling satisfied that I got to make-out with the guy my ex wanted but couldn’t have.

Little did I know that this dude would then call me every subsequent day and talk my ear off. There isn’t a day since that he hasn’t. It kills me most to know that his disease will eventually take that from me. I have spoken with him at length ever since then and to think I will have to face a day where I don’t just cuts my gut.

August 30, 2021

Saying What Has Been Said Before

As of last Thursday, it has been a year since my husband was officially diagnosed with ALS.

As one does, we look back over the journey to see the differences from then to now. What I really want to do is to write this sparkling and profound story with few defeats and many triumphs but I have nothing. In addition to that, I get so caught up into trying to be inspiring that my voice gets lost in the words. What I end up writing feels forced. It feels disingenuous, which is not my goal. Ultimately, it’s not me. I write with my heart on my sleeve, with all my cards laid out for all to see. It’s the only way to be. Trying to keep out the failures and the sadness is a detriment to myself, and no one else.

The reality has put a lot of things into focus, that for so long had been fuzzy. I have suffered most with deciding if my husband was truly “the one.” I always came up with so many excuses to say we weren’t: I was too young; I wasn’t ready. All of this bullshit. I didn’t trust my gut, because it has been wrong before. So instead of enjoying what I have in front of me, I him-and-hawed trying to feel out if it was the right decision. There is no “right” answer. Ever. We just choose a path and learn. Attempting to go back and try another is pointless. There is only forward.

It’s funny, to me, saying all of that because it is the same bullshit that has been told to us over and over again. We just never let it sink because we refuse to listen. We refuse to understand. “There’s always a chance.” Maybe, but maybe not. It’s better to treat life as a “one and done” deal. Thinking that we can get back to reach what we lost is a farce we repeatedly tell ourselves to lull our mind into a false sense of security. “There’s always another chance.” Nope. We only have now.

The beauty of that belief has done some amazing things for our lives. We bought a new house. We moved. We have journeyed across the country, twice. We have seen and done things neither of us thought we could or would do. Yeah, Covid and his disability has made it more difficult, but all of those minor setbacks have paled in comparison to what we’ve experienced.

The only thing that can be truly measured, is the loss of my husband’s independence. He has to rely on me or my brother-husband to eat, to go to the bathroom, to stand without falling. His arms and hands are very nearly worthless from what he used to do. Using a cellphone is near impossible. Thank the geniuses at apple for the voice control features. Without it he wouldn’t even be able to peruse Facebook, text, or make phone calls. Technology is a bane on society, but also a fantastic tool to give one the illusion of normalcy.

I do wish there was something I could add, but there is nothing that I can say that would be any different than from the hundreds of voices before my own.

I will just reiterate that time is precious. Live in the now and don’t hesitate, for even a second. This moment is the only one you truly have. Make it worthwhile. A life of experiences is worth more than any amount of money saved.