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.

June 22, 2021

Looking into the dark

Im staring into a dark abyss as my husband and I head into tomorrow, and I am nervous. I’d even go so far to say scared. The husband starts a trial drug (Zilucoplan) for ALS and the number one thing I don’t want to do is get my hopes up. Which is ridiculous to even say because we all know I will. Even I am well aware of that. It’s just part of human nature. We hope.

It’s been almost a year that my husband and I received the diagnosis that he has ALS. And here we are on the precipice of something that could help slow the progression. That is, of course, if he gets the actual drug. Neither the doctors, nor we, will know. Probably not even for some time after the preliminary 6 month trial. There is a chance that he could get the placebo. And this disease is not one to “wait.” So, I’m hoping beyond all hope that gets the drug. (See, impossible not to.)

The odds are good (75%), but our luck hasn’t been the best these last two years. Which is why I hesitate to let myself have even an inkling of optimism. I don’t want to be wrong. The hurt would be even worse to have this expectation for positive results, but in the end to not have them at all. It would almost be better to never try it to begin with. However my husband wants his struggle to mean something. And regardless of him receiving the true drug or the placebo will still greatly contribute to the cause. It will help make someone else’s future life better.

All opportunities worth doing in life are scary. These actions are filled with infinite unknown variables. Which is why we do them, why we take these risks. We want to see what comes to us out of the dark. We just hope they’re shimmering in our favor.

June 18, 2021

Steam Whistle, Come to the Yard for a Bitchfest

I’m frustrated. On the cusp of going on our 3 week road trip, the plans I had made to care for my mother in my absence have been cancelled. I tried to iron out the details but it seems that Alzheimers is just going around and my aunt, who was supposed to come down and stay for a week, won’t be able to because her husband can’t care for HIS mother with alzheimer’s. So, she has to stay. They’re in the midst of trying to get her into a memory care facility and having a tough time.

There was a statement she made to me in our text exchange that annoyed me. She said “I feel really bad but my husband needs my help.” And I wanted to reply, as does mine. Y’know, the one that is dying? Anyway… it would have been petty and the thing is I understand the stress that comes with caring for someone with “mush brain.”

I don’t say that to be insensitive. Don’t get me wrong, it is. I use it as a way of getting past my frustration. The whole situation (now and the broader picture) makes me angry. I’m at a loss. And this little hiccup… It makes me more angry. Because, this grown ass man can’t care for his mother (he’s in his late 60’s by the way) but I’m supposed to?

I’m in my head about certian expectations, which I perceive as being projected onto me from my family. No one has ever said a single word to allude to such, yet I still feel that way. I hate it. I want to be rid of my family. I genuinely find no joy with or in them, and in the end they have just hurt me. Primarily because of how they have treated or ignored my mother.

My mom has this strong belief in “family.” She would do anything, for any one of them, at the drop of hat. That is not an exaggeration. One time my cousin’s EX-wife called up to ask if my mom would be willing to pick up a friend of hers and drive him somewhere. A total stranger. My mother had her reservations but in the end SHE WAS GOING TO DO IT! I cannot comprehend that sense of familial loyalty. Mainly because I have never seen or received it in return.

Now as my mother is failing and losing all sense of who she is, my family is not there. She languishes in solitude. I tried to do what I could, but in the end her disease has brought out the “bigot” in her and she doesn’t want to live with a bunch of fags. (The plan was for her to move in with us at our new, bigger, place but she flat out refused. There are “too many men” and she “wants to be around christians.”)

It is near impossible for me to separate my “alzheimer’s mother” from who she once had been. At one time she genuinely felt that way. It was just seeing how my husband and I acted around each other that she changed her tune. She became more accepting and loving, or that was what she made me believe. Maybe she always felt the same way and just lied to my face. Which is why I cannot separate these current feelings from the disease.

I will however do what I have to for my mother, on my terms. I am basically waiting out the clock until it is IMPERITIVE for her to be put into a home. My husband has repeatedly told me that this is an expensive endeavour and will eat all of her savings, but I DO NOT CARE. I want nothing from her in the end. Her money is her’s, she raised me to be self reliant (to think for myself) and I can do just that. (She did a good job.) It is truly expensive as fuck, and the fact that insurance doesn’t pay a goddamn dime is a JOKE.

What pains me most about all of this flakey family bullshit is how much stock my mother put into them. Much like that lie Fox News sold her on gold and silver, she did the same for this idea of “blood is thicker than water” and paid out her ass. (I have since learned the adage most quoted is a bastardization of the actual saying, which literally says the opposite.) She really believed that family was everything. That you do whatever you can for them. Well… Here we are.

I’ve already decided that once she is gone, I will truly never speak to any of them again. I have no patience or feelings toward them, other than contempt for how they treated the one person who believed in them the most. I couldn’t give a fuck if they loved or even liked me. What mattered most was how they treated a truly loving woman.

June 10, 2021

Plan to not have one

It would figure that the day I sat down and actually mapped out our upcoming road trip that my template would get tossed aside. It’s the irony of my life. However, while it is irritating it is for the better.

We have been anticipating this road trip to Nashville since March. (Maybe even February, that whole memory thing though.) Initially, I had outlined a road map with one route but that got set aside because the husband wants to do two. And when the boyfriend joins us, mid-way through, he didn’t want to do the “southern” route. To be frank, I don’t want to do that one either. It’s all Texas. No offense to Texas, but the lone star state in mid-summer… hard pass.

So it was decided that we would do the southern route to Nashville first. That way we could make a stop-off in Dallas to visit the brother-huband’s close aunt. Now, that isn’t even happening.

The husband opined that there was a reason we were dragging our feet. We knew subconciously that it was going to change. That may be true, but I chock it up to us being lackadaisical about any sort of planning and preperation. Charlie just flies by the seat of his pants. I need (at least) an outline. I used to be one that needed a specific plan, one in which we stick strictly to and do not deviate from. That type of mentality does not mesh well with my husband’s typical approach to anything. It’s probably the reason we had such a hard go in those early years. I was trying to force him to do it my way and ended up frustrated at him when he didn’t.

I have since adapted. My husband and general life has taught me that plans are a joke. They typically never work out, and usually the bright spots are ones you cannot plan.

We’re still going on this trip it has just been bumped.

The reason it was moved is that we need to be in Los Angeles for the first dose of the ALS trial drug a week after we were scheduled to set out. I really wish they could have given him the first dose on Tuesday, but they needed to get him vaccinated for meningitis. There is a high risk he could contract it while on the trial drug. He already has ALS, let’s not add to the list.

Plus, it works out that I get to be there to see how to go about doing the injections. This way they can show me and the brother-husband how to do the injections and give us the medication we need going forward. (Side note: I fu-hucking hate needles.)

I wish I could remember the name of the one he’s taking, but (again) I was in two places at once on Tuesday and didn’t pay any attention. What I do know is that the potential of this drug (if he’s in the 75% who get the real medication) is will slow the progression and has a possibility of reversing some of the side effects of ALS. While I hope with every fiber of my being that it can undo some of it, I am not naive. In these situations it’s best to be realistic. Hope for the best, plan for the worst.