ALS

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 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.

March 22, 2021

The Struggle to Breathe

We are nowhere near the time that my husband has left me. That moment sits as a tiny spec on the horizon of my timeline, but, as with time, we march ever toward it. And knowing that it’s there, rots me from the inside.

My grief of the situation comes and goes. I have gotten to a place where I can handle it when it does exist in my headspace. Those are the days I ugly cry in my car, hoping no one in the vehicle next to me happens to look over. I am very unattractive when I cry. I literally struggle to breathe, as if every breath becomes thinner and thinner and I am just gasping at air. The only other time I have experienced such tears was the time my husband and I had a brief separation.

Before we became polyamorous we basically just cheated on each other. Our relationship had turned into lies and secrets and neither one of us had the guts to be honest. The truth came out when I downloaded Grindr to cheat. I caught his profile at the end of our street, on his way to visit his dad in Palm Springs. Over the course of his brief trip I watched his account like a hawk. I was obsessed. When he returned I was honest. We struggled with things after that, and at one point I asked him to leave. He went and stayed in a hotel for a few days, and that morning I cried much like I do now. I could barely get out of bed. If I attempted to get dressed for work, I would start to cry again and my legs would buckle out beneath me. It was one of the worst mornings of my life.

At the time I didn’t understand these tears. I have cried before but never like this. And I always questions their sincerity. Even now I wonder if they’re real, or if it’s just because I am expected to feel something. I think I’m the only person who doubts such things.

After his return to our house our relationship changed. We started to communicate and eventually the truth about his infidelity came out. Instead of being angry with him I was overcome with relief. Finally, I wasn’t the worst one in the relationship. The one who cheated on an honest, dutiful, good man. At least that was the narrative I told myself, because I had repeatedly asked him if he had. He would always tell me that he hadn’t and I would feel ever worse. When I finally got the truth it felt like I could finally breathe. A gigantic weight had been lifted from our relationship and my shoulders. Since then our bond has never been stronger. All it took was the truth, and the inability (both of us have) to give up.

It seems to track that once we finally move into a better place in our marriage he would be taken from me. Even now my eyes fill with tears. I just want to scream. I want to take a sledgehammer and destroy everything in my path until I am too weak and too tired to carry on. There are days that I literally just want to die. Losing my father, my mother dwindling due to Alzheimer’s, and my husband to ALS is just too much sometimes.

Just know, I am too much of a coward and (bizarrely at the same time) too conceited to take my own life. That being said, just know that if I were hit by a car I wouldn’t try and hold on.

March 8, 2021

A Year in Review: Covid Providence

I am going to say something I doubt has been uttered by very many, if anyone at all: the pandemic was a blessing in disguise. For me and those in my life at least. Not everyone has been “blessed” (for lack of a better word) but for the overall arcs over the past year it was beneficial that it went into total shut-down.

Let’s start with the first that, in hindsight, was super dangerous and had drastic effects: my husband’s obsession with the gym. He had been on paid leave from his teaching job. His symptoms of ALS had just started to show at the beginning of the 2019-2020 school year. He thought it was stress, because the job is insanely overwhelming at times, but that turned out to not be the case. At the start of his disability, he started to see a slough of doctors to pin-point what was happening to him. They had no answers. So, my husband treated this time like a little vacation. He was searching for purpose and the drive to do something worthwhile. And even though he was seeing a doctor for the random physical occurrences in his body, he decided to get into exercising and building muscle.

During the summer (prior to his leave) my husband had just had the gastric sleeve surgery and had lost a ton of weight. He wanted to shape up. So, he dove head first into YouTube videos about the subject and body sculpting. He got a gym membership and got so obsessed he would spend hours working out. This was for about a month prior to lockdown. Even in mandatory quarantine he didn’t want to lose his momentum (and surprising love) of exercising that he bought at-home equipment. However during the quarantine he maybe did it once or twice. He felt weird doing it when I was working from home.

Eventually he stopped altogether and it wouldn’t even be until August that we would learn that he had ALS; a disease that destroys your muscles and makes it impossible to heal the ones that are damaged. I shudder at the thought if he had kept going. Would he be worse off than he already is?

That was the biggest miracle of all.

The next was that, because I got to work from home, I got to spend more time with him. Granted I was a rage monster most of it, as I pounded away on the wireless keyboard in our living room. It was nice to be around him. It was also during this time that I watched him more and saw the toll the disease was taking on his body, but not really having the answers to what I was witnessing. I too thought it was stress. I wanted it to be that. Eventually, because Covid had made working from home so accessible, I was able to do jobs on our road trip from California to the Mayo Clinic in Minnesota to get a second opinion. Sure, it ultimately confirmed what we had already been told, but I got to take a memorable trip with him.

A bizarre side effect was that the man who would eventually become my husbands boyfriend, and a huge factor in our lives, was forced out of going on trip, backpacking across Europe. He had quit his job just weeks before he was going to take his sabbatical and prior to the explosion of this deadly disease. Instead of getting a once-in-a-lifetime trip, he was trapped at home. In his boredom he found other ways to occupy his time. One of which was (months into lockdown) he got on scruff to possibly make new friends, which is where he met my husband. He came over one night and has, since then, been a staple in our lives, holding our little story together. I don’t know where he came from, but he has done so much for the both of us that I don’t think I can ever repay him.

Speaking of boyfriends, it also brought mine closer to my husband. Because we couldn’t go anywhere, we were forced to cohabitate, which was something we really hadn’t done prior to lockdown. For the most part, the lives my husband and I led, apart from our marriage, were separate. Covid absolutely killed that. We started making dinners, watching tv, and spending weekends together. It’s been nice.

A really random side-effect, that turned into a huge factor, was my work-load exploded. My income has grown exponentially since because the role this pandemic has played on the real estate market. I have made more money and therefore can now afford a bigger house that will accommodate a wheel-chair, when the time comes for my husband to reside in one permanently. Up until this past year, the idea of upgrading was fleeting. Yet, here we are.

Don’t get me wrong. Covid has been horrific. It has devastated so many lives. It has made the process of dying that much shittier for my husband. When faced with one’s own definitive end, he wants to travel and see the world while still able. This disease has robbed my husband of that luxury. But then again… Maybe it’s good. We would have spent so much money that getting a bigger, nicer house would have been impossible.

This isn’t shared to brag. By no means. If the reader sees this as such, you’re missing my point. And ultimately, I have failed as a writer. It is posted as a way to try and look at this shit in a rosier light. At the end of the day this entire event has been horrific. It has needlessly killed so many people because of the negligent actions of others. It has revealed the cruelty and selfishness of humankind and for that I loathe it. It has robbed everyone a year of their life, one they will never be able to get back. I really wish it hadn’t happened, but if it hadn’t, where would my road have gone?