Tumbling Down ever further · 5:20am Aug 29th, 2021
I don’t like talking about my problems. Not in any great detail at least. I do not take pleasure in looking like I’m fishing for sympathy. But when life kicks you to the curb, you want to pull up a stool at your favorite pub and just vent with the bartender.
I’ve been clear that 2018 was the point where my life started taking a downward spiral. And 2020 ended up being one of my most hated years for reasons that even COVID-19 had little to do with. But something I omitted about that year was family issues regarding my father.
I have not been shy about my strained relationship with my father lasting for a long time. Despite an almost celebrity level of public consensus, I can say that he is no saint. But last year, he developed a worsening loss of motor abilities to the point where he could no longer walk after a year. We were convinced it was the result of some sort of auto immune disorder, but it was so hard to pin down exactly what the issue was that the experts resorted to extensive DNA analysis to pinpoint the cause.
My father’s deterioration had been…difficult, due to his complete reliance on others. And it has clashed spectacularly hard with his infamous pride and lack of patience. I would almost say that seeing him break down in tears after a difficult movement from a mere sitting position to another would be karmic when considering his greatest personality faults. At the very least, I knew testing was being done and that a solution would be made clear once the cause was identified. This humbling experience might even benefit him once treatment was made available after the cause was found.
But that all changed today. My mother contacted me last night with the claim that she had information regarding my dad’s condition. My response was dread. Any text message that contains something along the lines of “We need to talk” never bodes well. Although I tried to stay optimistic and went into this conversation expecting at least some bad news along with good news.
What I was not expecting was a revelation of nothing but bad news.
DNA testing revealed that my father is afflicted by ALS. And most shocking of all is that it is the sort that is caused by a gene mutation. A mutation so rare that only ten people on the planet possess it. On top of the possibility that I may possess this faulty gene myself, the revelation of the cause being ALS destroyed any hope we had.
There is no cure or treatment for this. My father will most likely be dead before the decade is over and I am far from ready for it. For all the issues I’ve had with my father over the years, I would never have wished this upon him.
I feel like I am in some stage of grief tonight. There is no happy ending waiting at the end of this. By this point, I feel like I am cursed. Every year continues to get worse, but I especially resent 2021 for dragging my family into this misery. What did I do to garner this trend of worsening fortunes over the past three years?
All I can do is hang in there. Whatever that amounts to…
Fuck man, sorry. I know words from a stranger on the internet aren't worth their weight in shit, and all I can say is sorry. Enjoy your time with him, he might have been an ass, but no one deserves to die alone. 2020/1 has fucked over so many lives that didn't deserve it. I hope you can find some measure of peace with your dad, dying on bad terms leaves a stain on the heart of those who have to carry on.
Dude, I am sorry that your father contracted ALS. All you can do is to be with him. Now I can't speak for your dad but I am sure that he doesn't want you to be sad for the rest of your life. He wants you to be happy. Take your time, dude.
*Hugs you tight*
Dude, that is... That's terrible. ALS isn't something I'd wish on my worst enemy. I'm sorry. My mom just recently experienced the death of an estranged parent (from Covid), it leaves a lot of complicated feelings behind that are stuck frozen in place without any resolution. I hope for both your sakes that you can make some sort of amends with him before it's too late. But don't feel like you're obligated to either, just do what feels right.
Also, GOD I hope you don't have it. A mutation that rare very likely means it's recessive, so most likely you're only a carrier at worst. It'd probably be worth getting that checked out though, just for peace of mind if anything.
This is a valuable lesson in appreciating what you have. Though unpleasant, I'd rather have a father with miminal motor skills than not to have one at all. Mine has been gone since I was 5 years old. I am now 27.
I've learned to always be happy with what I have, even if what I have might not be much. That depends on how you look at it.
It's true what they say: "The less of something you have, the more valuable it becomes for you."
There are no words I can say that will ease the pain of such a loss.... I pray that his passing is as painless as it can be, for him and your family, no one deserves to suffer from constant and inescapable pain.
I pray that you that may not have Als also and I'm sorry for your loved one you have my deepest condolences Humanity I want you to enjoy as much time with him as you can before he passes on when he does he deserves all the love and tears that you give him and when he's gone you will know deep down he no longer has to suffer anymore from ALS regardless I will be praying for you and your family🙏🙏🙏🙏🙏🙏🕊🕊🕊🕊🕊🌿🌿🌿