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.

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?

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.

Adventure on the Horizon

…And we got it, an appointment with the Mayo Clinic to get my husband a second opinion.

According to the Mayo call center they had attempted to return his request on the 11th and left a message, but I don’t know where this supposed voicemail could be. Because it is certainly not with us. (That’s just my frustration for this whole thing showing.) Regardless we have it in hand.

I am nervous, mildly excited, and a little hopeful. The actual appointment date is on the 12th and I have this ridiculous notion that whenever I come across this number, good things are in store. This number has followed me my entire life and… fuck I’m starting to tear up. It’s stupid to think like this. I know it’s a human reaction to hope when faced with the most dire of circumstances. However I have to be realistic. Seeing his progression, even since we found out, is upsetting. I am certain the intial ALS diagnosis is correct, but that’s also my pessimism rearing it’s ugly head. I can’t let myself be optimistic.

I’m excited because we’re making this a pseudo vacation. We’re going to take our time getting up there, stopping wherever we will on the way. And then when all the appointments are over, the plan is to take a quick trip over to Chicago. Neither of us has been there before, and there is no time like the present right?

Live for today, kids. You never know what life will throw at you.