ALS

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?

September 22, 2020

Poly-Cogitate

By most socially accepted standards my relationship is unique. My husband and I have an open marriage. I have a boyfriend and he has had his collection of boys on the side. It was agreed upon at a time when our marriage was on the rocks, but after one night drinking at a Palm Springs bar, our relationship actually has never been stronger. I think it’s because with having an open relationship, we have to be honest and vulnerable. We have to share whenever something is bothering us and rigorously set boundaries of where we will allow ourselves/the relationship to go. It’s the biggest game of trial and error and (so far) has worked.

With my husband’s ALS diagnosis, it has made things even more complex than before. Exclusively for me.

When I was first dealing with the initial shock I went through this weird range of emotions. I was overwhelmed with guilt that I was basically replacing my dying husband with another before he was even gone. Then I shot off on a mental tangent that my in-laws would look at me as though I was brushing my husband aside or that I didn’t care for him as much as I should. The worst of all of them was that I thought my boyfriend wanted him to die so he could “finally have me.” All of this was thought up and manufactured in my head. There was nothing that anyone had done or said for these to be legitimate.

Regardless, I couldn’t shake them and these lingered like a cloud of gnats at the back of my mind.

I have since moved past it all because of communication. It was through that that I was reminded that when we agreed on all of this there wasn’t a terminal diagnosis. (Maybe our marriage, but that’s been recovered.) So, I can’t get caught up in these negative thoughts when they don’t apply and don’t exist.

I felt my guilt and shame because I was driven to do more for him. Be there. Do whatever I can. With the way it is, there is nothing dictating that I can’t.

I felt even more remorse toward my boyfriend because he was unfairly getting the brunt of my anger (about my husband dying) for absolutely no reason at all. It was unreasonable of me to even think he felt that way, and since we’ve talked I know he doesn’t. He’s even gone as far to say that he will help me care for him when it gets the most difficult. Again, offering way more of himself than he should. I never expected that kind of reaction.

Again, the key to all of this working is honest communication. The only hold out is, usually, me. I am so quick to share every detail of my personal life, but there are certain truths that I can’t be open about. Maybe it’s my need to still have “secrets.” It’s just stupid for me to even attempt at being emotionally guarded when I’m wounded, because I have THE WORST poker face. Anyone who is within my orbit will immediately know something is absolutely bothering me, no matter how I empathically remark to the contrary.

September 11, 2020

Angerville, Population 1

Within the five stages of grief I am currently at anger, and most likely will be here for some time. How I know is I am usually an angry person. It’s a fact that I don’t know how to show any other emotion. I have surmised it is because I get this feeling that by showing it, in place of sadness or confusion, I don’t look “weak.” I guess that’s the only time I am quintessential male.

I was never taught from my parents that any emotion is unacceptable. On the contrary, my mother fostered the idea that all emotions are welcomed and should be released. My father never gave any inclination that any of my feelings were not valid. So, this concept wherein I refuse to look “weak” is kind of bizarre, all things considered.

Generally, I am just angry about everything. There is no specific topic that draws my ire. It’s anything. Part of me wishes I didn’t feel that way, but the other half doesn’t want it to dissipate. In my aggressive feelings I receive a weird sense of control, while being nowhere near it.

I will say, the one thing that does have me upset, is my husband getting a second opinion. While I was initially on-board (and still am) I have become increasingly concerned that we are wasting our time. Unlike my husband’s family, I do not believe the doctor is incorrect in his ALS diagnosis. I wish it was just a vitamin deficiency, but I have accepted that it isn’t. In doing so, I have picked my pony on where we should go to next, and for me that’s treatment, not in following this foolish path to a fantasy land that is merely a side route to the ultimate destination.

There is no cure for ALS. There are only scientific elixirs that delay the inevitable. The sooner you get on them, the more likely to slow it’s progression. The decent into it brings about paralysis and the inability to breathe and swallow. I am uncertain if speaking is in there (I have stopped researching because I can’t deal with the gravity of his illness) but I imagine it is. Not being able to go to him for advice is going to cut me the most. I go to him for his vast knowledge and because he knows better than anyone how to soothe “the beast.”

The hardest part is I can’t share these feelings. I feel like I am burden to him or making it worse. I don’t want to bog down the time he has with my inability to cope. He’s doing miraculously, or at least pretending better than I. For being a somewhat trained actor, I am a horrible one in real life.

I want the doctor to be wrong, but life is clearly not about giving people what they want. Example, this wouldn’t be happening at all. He could have been like all the other people who’ve had the weight-loss surgery and gone about living his life as normal. Nope… he gets to have his ability to do normal tasks taken from him. (It should be noted that there is no scientific evidence that one lead to the other, it just appears that way from an outsider’s perspective.)

I just hope we’re not wasting time. In the end it can go either way, really. Either he starts the treatments and then we find out it’s just the deficiency, or he waits and the diagnosis is reconfirmed. Whichever it ends up being, the process in getting additional review is agonizingly slow against a disease that isn’t about taking it’s time.

September 9, 2020

Terminal in the time of Covid

Covid truly has ruined everything. Even getting a terminal illness.

The most human thing people do, when they’re given a prospective date of expiration, is they want to make the most of the time they have. They don’t want to waste it sitting at home. They want to drink, travel, have new experiences. Well, that is made impossible when everything is shut down.

The other odd side effect is even if you manage to do something, people get up in arms about you “endangering lives” and not continuing to quarantine. They shame you for not doing what they’re doing.

They’re allowed to feel that way, but what if you are given 3 years left to live. Would these same people be cool with sitting inside their home, waiting until they die? And even if the person with this disease caught Covid, they’ve already been deemed terminal. It is quite the ethical conundrum.

My husband was diagnosed with ALS in the time of Covid. He has approximately 3-9 years left, depending on his progression. And even then, that’s just living. He could have 6 months to a few years remaining where he can walk and move around on his own. At some point he will be wheelchair bound. When that occurs is all up to the disease and entirely out of his hands.

True to natural human desire, he and I want him to live everyday like it’s his last. We want to make the most of the time he has left. Whatever that may look like.

This previous weekend we wanted to take a trip, somewhere, to kick of his “Farewell Tour,” as we have dubbed it. Knowing that things are closed made our options real slim. I thought about just doing a road trip, but fuck if even that isn’t super difficult. Every time we made a pit stop every restaurant had their bathrooms closed to the public. I wanted to scream.

Ultimately we decided to visit family in Arizona. It got us out of the house and gave us a destination that didn’t require us to make plans or wear masks. We did still isolate and just spent our time in their homes, drinking; which made things awkward. My aunt got really hammered and started hitting on my husband.

“Have you ever had sex with a woman?” she asked, as we swam in her pool, in between the times she kept playing with my husband’s feet.

In the sober hours she had no recollection, or chose to ignore it. Which I am all for. Liquor makes people do the dumbest shit. And, boy, was she drunk. My favorite part was her telling us repeatedly how she had designed the layout of her backyard. “I’ve never designed anything, and I designed this. Can you believe it?”

I love her.

For a couple days we got to pretend that my husband isn’t dying.

While we were in Arizona, we decided to take a detour over to the Mayo Clinic. We may be getting our second opinion from this particular campus, since the hub’s primary at Cedars is referring him there, to one of his colleagues who specializes in ALS. If he’s accepted, that could very well be where we spend a good chunk of our time.

Overall, it was a good weekend, even despite the challenges Covid creates. It’s just super shitty to try and live while the world and the disease dictate us to not.