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?

January 25, 2021

Reading-Road Trip

The anxiety I get posting about travelling is real. I love my twitter peeps but they will turn on your in a second if you do something irresponsible. Travelling in a pandemic is definitely one of them, yes. I do not disagree. However, when someone is literally dying, with only so much time left, all they want to do is travel. What then? It’s a conundrum. I want to share these journeys with these friends but at the same time… Some person will inevitably pop up on a comment thread commenting on how “selfish” I am by not following the stay at home order.

I have just come to the conclusion that I am going to travel with my husband. If someone decides to add their two-cents I will provide the reason. Whether they want to agree or not is on them, but I won’t feel sorry for trying to enjoy what moments remain. Nor of making the most of them during a fucking pandemic.

If I had to choose when my husband would get such a deadly disease it wouldn’t have been now. I would have chosen a time when we could go on cruises or travel abroad. He’s seen so much, yet so little. When one is faced with the inevitability of being human, all the other petty bullshit falls away. You’re left with what is important and that is LIVING.

I have heard that sentiment so many times, but (I believe) for most it doesn’t really hit the mark until you live it. The understanding of this particular human flaw wasn’t made aware to me until I did this thing called the “landmark forum.” What I learned there was that we are constantly given the same advice but until we are ready to hear and accept it, we don’t pay it any mind. Even though we may have been told it over and over again. That’s how landmark was. They told us the same bullshit repeatedly, until they told us, “we’ve told you the same thing all weekend.” If you’re interested, I highly recommend the experience. It’s pricey AF and TOTES a cult. But if you keep that in mind you can gather what you need for the experience to matter.

This weekend I got a wild hair up my ass to go to Salt Lake City. My husband (who is the one that is dying) wanted to take a trip somewhere, he just didn’t care where. The last time we had done one, we had stopped in Salt Lake just to sleep and move onto the next stop early in the morning. (This was during out journey to get a second opinion on his ALS diagnosis at the Mayo Clinic in Rochester.)

We packed up a bag for the weekend, the boyfriends, and headed out on the road. I had an ulterior motive of forcing the boys to listen to my novel. The hubs joked that I was torturing them, but at the conclusion he told me he thought it was good. “Just be done with it!”

The boys seemed to enjoy it too. My BF told me that I could get it finished in a month. (How overly optimistic of him.) My husband’s boyfriend opined to him (when I was out of the room) that he was excited to read the next one.

The one opinion that really mattered, and took me by surprise, was my own. I genuinely loved my book, by a lot. It was odd. I couldn’t wait to hear the next chapter or see where I took the narrative. I was surprised at the little clues I left that seemed innocuous to the boys, but meant so much to me. I felt proud.

Overall our little jaunt was fun. We got to see more of Salt Lake, the parts that weren’t obstructed by snow clouds that is, and got out of town. Most importantly I got feedback on my novel, from three people at once. Sure they were trapped in a confined space for almost 20 hours, with nowhere to go, but we’re only going to focus on the fact that I liked my story.

January 17, 2021

A storms rolling in

Grief, for those living in a household with a terminal diagnosis, comes in waves. One moment everything seems just fine and then the next the floor falls out from beneath you and you plummet into the black abyss of depression. Your thoughts are consumed with the inevitable even though you are no where near where you fear. It sucks. Tonight was one of those nights.

For all things considered my husband is a rock. How he is handling his diagnosis is astounding. You wouldn’t guess that he even was going to die with the way he jokes about it. “I have the Als,” he says it like a name. Most of the time he’s comforting me, when it should be the other way around. He is hardly ever sent into bouts of depression. If his skies start to cloud, and comes into contact with my own storm front it creates this twister of depression. In the beginning it was horrible storms. Since then we’ve learned how to cope. At least I’ve learned when I need to take some time or just change the subject.

I can’t imagine how he is doing so well. Sometimes I wonder if it’s just denial masquerading as calm resolve. But then there are moments where he loops back around and we revisit the other stages of grief. But, like I said, for the most part he is taking it well. If this were me I’d be devastated. I’d be angry. Not him. He is so strong.

More than anything, I want to be the rock when he’s weak. He’s the one who is dying, yet he’s the one comforting those around him. It should be the opposite.

Inside I am a devastated. I feel a storm moving in, but I can’t let it build. Staying strong is the only way for us both to get back to our blue skies. However momentary they may be.

January 13, 2021

Housing Crisis

If my world wasn’t already in enough chaos, it has been decided that it is time to sell our house and move to something bigger. The husband is still able to walk at this point but it’s only a matter of time until he’s in a wheelchair. When that happens our current house just doesn’t accommodate the space requirements. It’s a single narrow hallway and hard right angles. Our living room barely allows for enough walkway with the furniture we have. I don’t think it’s going to get easier with a bulky motorized chair.

This house holds a special place in my heart. It was my and my husbands first home purchase. It was also designed to my specifications. I picked out everything. My husbands construction business paid for and did the renovations. This house is us. Letting it go is letting go of the past. And it makes sense to do it, everything is drastically different. I just don’t want to. I’m quite the sentimental bitch. But a house isn’t really us or our marriage so clinging to it is just ridiculous.

The idea of putting the house up for sale causes me so much anxiety. The preparation. The people coming to view it. The back and forth. Then the ultimate move. Every thought twists my stomach into a ball and pulls my lungs into the knot. Even as overwhelmed as I feel, I know that just taking a step back and doing one thing at a time will make it much easier. It’s just hard to do that. On my own I could (I think), but my husbands constant back and forth is what makes it difficult. One minute we need to get a new house immediately, then the next it’s just selling the house, or it’s “we could just rent.” I know that it’s just mental vomit, but I hate holding the metaphorical bucket.

The plan (as of right now) is to replace this with new construction. I want to trick out the new place and make it a smart house, so that when the hubs can’t use his hands anymore he can do things with his voice. Maybe that would give him a sense of control in a situation he has none. Plus it’s cool to turn shit on and off at your command. It’s like you’re a king. “Alexa, suckle my balls.”

I’m just overwhelmed. It’s going to throw a wrench into most plans. His mom and sister know about our situation (his and my boyfriends) but how does it work while we have to stay with his mom while our home is being constructed? Or will things get so bad that she’ll just say that we need to stay with her, so she can help care for him? I love my mother in law like my own mother, but I do not want to live with her. I don’t even want to share a home with the woman who gave me life.

That’s another reason we’re moving. My mother currently has the capacity to somewhat care for herself. But little by little her ability is diminishing. It’s only a matter of time until she has to move in with me. At least, that’s what Charlie is pushing for. I would prefer putting her into a care facility with professionals who can bathe her, feed her, and watch her. Doing those things for her would just be their job and not cause them constant emotional and mental anguish. Whenever I do them I have to spend a whole night recovering.

All of it is unknown and uncertain. I just have to remember that for most of these things “we’re not there yet.” Right now, the only task is to get the house listed. Just that is going to be a fucking endeavor. We have to paint and put in new carpet. Then we have the added burden of rearranging furniture to give the illusion that the home has space.

One step at a time.