I made this vow over the weekend, and it should come as no surprise to anyone who really knows me: Regardless of my diagnosis on Wednesday, I will fight this neurological disease with everything in me. It has no idea the mistake it made coming at me, son. And once I’m back to feeling like myself, I’m hitting the world like an emeffing tornado. Stand back and watch because the show will be entertaining!
Tag Archives: spirituality
Afternoon Whining
I’ve forgotten what it feels like to feel normal. I don’t mean in a behavioral sense; I’ve never fit into society’s definition of normal, which by the way is a myth at best. No, I mean I’ve forgotten what it feels like not to have this neurological condition. I’m aware that not so long ago I had energy and could concentrate on intricate tasks and could function at a high level, but now, because of the multitude of issues I’m dealing with, I can’t remember how it feels to feel healthy. It’s similar to how in the summer when the heat is oppressive and sweat coats your skin it’s hard to recall the chill of winter and the need for a sweater. I know I once felt strong and virile, but the memory seems as if it belonged to someone else’s life.
Mentally, I was not designed to be disabled. I know there are people in this world who would relish the opportunity to lie in bed or sit at the computer most of the day, and if I could concentrate long enough to write throughout the day, I might be able to adjust. But I am not the kind of person who likes idleness. I’m happiest when I feel productive. Every time I look at the yard and see how far behind I’ve fallen on the upkeep, my stomach aches. As I watch all of the progress I had made on the property being reclaimed by nature, a piece of me cries out internally. As the days roll by and book five still isn’t complete, I just want to scream. I have too much to do to feel this sick.
Once I have a confirmed diagnosis, I’ll hopefully be able to receive treatment and feel better. Once I have that diagnosis, I’ll try to describe and explain in more detail what the symptoms are like. For now, I don’t want to go into much detail because I don’t feel like speculation on my part or anyone else’s will be helpful. I know people mean well when they ask if I’ve considered X, but it’s really not productive. Most likely, yes, either I or one of the doctors has considered X, and it has already been ruled out. Again, I know you mean well, but after three years, we’ve covered all the easy stuff two and three times.
I also don’t like being at the mercy of the system. So far, all it has done is let me down at every step of my life, so I don’t have much hope for it to take care of me now. That said, I’m blessed and grateful for the dear friends who have reached out to help me navigate this new reality. You know who you are, and I’m more appreciative of you than I can express. Once I have beaten this illness and am back to my rowdy self, I hope I can repay the kindnesses. That’s all for now. Physically, I’m quite uncomfortable today.
First World Whining
I keep seeing social media statuses that are some variation of “I’m so tired of seeing this ice bucket challenge.” Those poor people whose lives are so wrought with tumult that they have to endure a Facebook or Twitter newsfeed filled with people spreading awareness of a lethal neurological disease. How will they ever endure such hardship?
Nevermind that before this challenge began most people only had a passing acquaintance with ALS and some vague association of it with Lou Gehrig and his famous speech. Nevermind how much money has been donated to the ALS Foundation over the last two months. Nevermind that the reason this disease needs more awareness is because, despite the horror of its 100% lethal degeneration of nerve endings and voluntary muscles, it doesn’t affect enough people to warrant attention from pharmaceutical companies because there aren’t enough profits associated with treating it (that sentence alone pretty well summarizes everything wrong with our current healthcare system). No, the real travesty is that innocent people have been burdened with unwanted videos clogging up their social media feeds.
As the world teeters on the brink of war with the tensions in Gaza and the Ukraine and the United States, god forbid people come together and try to do something positive for others. As people die in Africa from the worst Ebola outbreak in history, god forbid human beings be so selfish as to record themselves dumping ice water on their heads and challenging their friends to do the same in the spirit of charity. God forbid sports celebrities make the news for something other than domestic violence or substance abuse. God forbid people display an act of humanity whether they fully understand the seriousness of the disease or not. How dare they clutter up the internet with this drivel!
The Ice Bucket Challenge represents the best and worst of America and humanity. On the one hand, the sheer volume of money raised for the foundation is staggering. Over $50 million at last check. In two months. That’s what people can accomplish when we come together, which is beautiful and inspiring. On the other, selfishness rears its head as certain people whine (and there is no other word for it, really) about the inconvenience of having to endure so many videos. That self-absorption, closed-mindedness, and judgmental self-righteousness is everything pushing humanity to the brink of extinction (and I don’t think that’s hyperbole; our situation is that dire). It’s funny how something so simple can become so much of a phenomenon and reveal so many layers of humanity.
For the last three years, I’ve battled an as yet undiagnosed neurological condition. As I type these words, my left hand twitches nonstop, muscle spasms flutter everywhere, and a host of other symptoms have nearly crippled my mind and body. As such, I have been deeply moved by the Ice Bucket Challenge because at the very least I see my friends and neighbors learning more about neurological conditions, and awareness goes a long way towards finding cures for illnesses (when profiteering doesn’t interfere). I for one am grateful to see each and every Ice Bucket Challenge video because they represent a sliver of hope that maybe human beings can still rally together to face challenges, and thankfully those who have accepted the challenge and embraced the spirit of giving still outweigh the selfish and self-absorbed.
Big Owl's Tree 