Depending on things going according to plan (and let’s face it they don’t tend to do that in my family), the husband and I could very well be taking a road trip to Minnesota to get a second opinion on his ALS diagnosis. While he and I believe the competence and skill of his current doctors, it would be negligent on our part to not make the effort. In addition, I know his family is holding out hope for their own “google search diagnoses” to be true. Since we were told he has motor neurone disease (aka ALS), each one of them has become experts within a few key term searches. The problem with their optimistic perspective is that it’s infectious. Now I too have a glimmer of hope.
I hate how pessimistic I have become. I call him “Dark Josh” and he jumps out every once in awhile when the weight of the world gets to be too much. He’s realistic, but also very cold and, at times, cruel. It’s not difficult to maintain my jaded world view after all the bullshit from this past year.
I say these things, though clearly I don’t believe them as staunchly as I had assumed. Or I wouldn’t be entertaining the idea of this side quest.
Don’t get me wrong, I really don’t want his diagnosis to be real. The last thing I want to see is my husband slowly disintegrate before my eyes, until he’s just gone. I’d rather gargle Trump’s balls while he poured bleach in my eyes. Yet, I can’t undo what’s already in process or ignore the matter-of-fact way in which these doctors discussed his dying… But I guess I can hope.
The hubs’s family holds a firm belief that he has a vitamin deficiency. They assume as much because his symptoms did not occur until after he had weightless surgery (the gastric “sleeve”). It was only a month (or two) after that they manifested. Many of the symptoms tied to this keyboard-diagnosis are very similar to those of ALS. But there are also a lot of symptoms that these articles claim to happen with these deficiencies that he hasn’t experienced. And the same could be said for the ALS. Even the doctor admitted that the timing is suspect and that there have been some atypical results in their tests. He too recommended getting another’s opinion.
The fact of the matter is, I am willing to go to the ends of the earth for him. No matter what it is. I will go with him, hoping for the best but preparing for the worst. And if we get the same answer, then we will take the next steps to slow the process. My biggest worry is that this will all have been for nothing and we will have wasted what little time we do have.
P.S. I hate that both my mother and husband have diseases with ticking clocks. Add some new writer’s to the room, God. You’re getting tired and sloppy with these recycled plot points. At least give me a long lost twin brother.
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.
And here we are. After all the tests and the wondering, we finally have an answer for my husband’s ailments. He has motor neuro disease. For those not in the know it’s a cousin to ALS. Just not a close enough family member to get invited to the family picnics.
I’m still in utter shock. I want to scream. I want to cry. But none of that is going to change the reality of the situation. Like my husband said, the only thing that’s changed is that we have a name for it. It was already happening.
So, in addition to watching my mother die of Alzheimer’s, I get the pleasure of doing the same for my husband. More proof to me that life is cold and cruel with no meaning or purpose to what transpires. There is no god and if there is, he’s wanking it as he’s watching my and my family’s misery.
Nothing makes you appreciate today like knowing it may be your last.
I still find it odd that the one class I took at community college, and got a B in, (my only B and I graduated summa) has been the most influential in my life. It’s shown me so much about death and what it looks like. It truly prepared me for the shit storm I was sailing into the eye of.
Hug your loved ones and don’t take any moment for granted, because it may be your last.
I’m filled to the brim with anxiety. And there is nothing I can do about it. Talking sometimes helps but in this particular situation I feel like conversation about it would only make things worse or even (perhaps) jinx it.
It occurred to me as I was driving, trying not to vomit from the swirling weight of the unknown in my gut, that this is why people believe in a higher power. They want to believe that an all powerful entity is out there looking out for them, protecting them.
I wish I could. I still have lingering residual faith. I find myself calling out to god for help, but after all the things I’ve experienced in just these past two years I have zero faith. And I know the answer to that is, life is struggle and it’s all part of “gods plan” but his plan sucks.
Please keep me and my husband in your thoughts these next couple months. Send all the good vibes your can, pray if you wish. I need all the positive energy to make sure things work out. And I realize that how they work out is how it was meant to be but… I’m hoping what is “destined” to happen doesnt make things worse.
I apologize for being vague. Like I said, I don’t want to jinx anything.