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.

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.

Grief Fragments

I really don’t know what to write. I know I should. I want to. But for the life of me, I am such a bundle of emotions, I can barely string together a coherent, pensive thought. Instead they’re fragments of grief.

It’s almost been a week since I found out my husband is dying/going to die. And it has been quite the emotional roller-coaster. The moments where I glide along an even track are my favorites, because it’s then that I can readjust and get my bearings. Although even then, I will barely have had any time and something will plunge me into a spiral. And it can honestly be anything. (Songs, I’ve discovered, are the worst.)

We have since spoken with the doctors handling his diagnosis and they seemed optimistic, in regards to treatment. (Or at least I took it as optimistic, even though the diagnosis is terminal.) The primary doctor or attending (whatever it is) was pretty certain he has ALS. I guess they went with motor neurone disease because it’s too soon to make a concrete diagnosis, and MND is kind of an umbrella, with other bizarre things beneath.

In regards to time… Well, even he said from the start that’s a loaded question. He said from his experience with the disease that it averages 4-5 years. Which, is good, and shitty. It all depends on the person and each one is different. The primary physician suggested doing clinical trials for treatments, and my husband definitely wants to (because he wants this to have meant something.) The resident also suggested a secondary treatment that would involve my husband getting shots three times a week, and would include a permanent port in his body for injection. I thought the hubs would say no to that but he was on-board. The doctor said this “infusion” typically adds about 1/3 to the time.

For whatever reason, I have a number of years stuck in my head. I only think of it because between the two of us, there is usually a 12 or 7 between us. And with the husband it’s always 7. However, I understand that’s just a grieving spouse clinging to hope. I should know, more than anyone at this point, that nothing is ever certain.

All down hill from here

As is custom, when I sit on the edge of a new year I take a look back at the previous one. And it must be said that 2019 was quite the train wreck. All the politics and world issues aside, my personal life was a rollercoaster.

Going chronologically, it started off great. In February of last year I passed my real estate appraisal licensing exam (on the third try) and officially became an appraiser. Then in May I was awarded my AA degree, summa cume laude (then proceeded to transfer to a more distinguished college campus). And in the space between these two landmark achievements, I felt empowered and returned to editing my novel (because nothing could stop the success train!)

I got halfway through my revisions before life turned on a goddamn dime.

The first punch to the gut was my mother getting, officially, diagnosed with Alzheimer’s. (Prior to that a nurse practitioner diagnosed her weird mental failings as being under too much stress.) Her loss of memories be damned, it was her erratic and bizarre behavior that finally showed my father and I the ugly truth we had been denying.

Following that my grandmother was diagnosed with stomach cancer. She was given a month to live and that she did. She passed away in the early morning hours after everyone had left her to rest.

Immediately after that death, my father fell and hit his head while taking his morning piss. (His third time falling that week.) He arrived at the hospital unresponsive and stayed that way until I gave the order to let him rest. He was gone in less than a minute, surrounded by his family.

Since then it has been failure after failure as I struggle to balance my job, my academic life, my romantic relationships, and being the sole caretaker for my mother. I try to keep up but I’m always letting someone down or forgetting to do something.

This had been the way of things until very recently…

After my husband had his weight loss surgery he began to have issues with his balance and walking. It got to be so worrisome that he was sent to a neurologist who ordered MRIs of both his brain and spine, and who gave an early diagnosis of “pressure on the spine.” He has since had them and now we wait for that news to hit us across the face.

To say that 2019 fucked me up would be an understatement. It bludgeoned me and left me on the side of the road to die.

But all is not lost…

This notion that at the stroke of midnight we are all given new lives and new opportunities is ridiculous. In reality we have that at all times. Even when things are shitty. Every moment is new and undiscovered. We get to forge new paths everyday. But just like any route the terrain is vastly different from the one that came before it. How you navigate through it depends solely on your willingness to keep going.

I am glad this year is done. But the shit storm that has become my life will only get progressively worse. It’s just the path I tread. However, I will take every moment I can to find happiness. I will surround myself with love and companionship to remind myself that in the end all that matters is what we did with the time we were given.