Friday, August 12, 2016

Awkward Laughter and Uncomfortable Silences

I don't like the look on that guy's face. Something ain't right. He's changed. He's grown away from me. He is barely a streaked facsimile. This trembling heap looks like a haggard Nicholas Cage after a Hangover movie level bender. Sick and tired.  I'm sick and tired of that guy looking sick and tired. I want to look at least a little better in my Facebook pics with all my recent visitors!

I have come to accept that my blog for some time will be at least a little bit of a journal of my current health issues, as they've only declined for the last eight weeks. The rapid decline is itself a story. With my continued loss of motor skills, even my being able to still type this is itself quickly becoming a story.

Lord, may I only shuffle in my father's physical footsteps, and not down the cold, dark mental paths and dead-ends that he has been lost within for years now. I don't want my written chronicle of this current health fiasco to devolve into a poignant yet rambling, dribbling pile of nonsense. Don't get me wrong, that could be entertaining. But Amy and the kids have to watch that too and it could get embarrassing. And since I have always been the weirdest person I know, good luck determining if and when I cross over to that much weirder and more colorful mental side.

For most of the last six years, I would jump out of bed every weekday about 4:00 am, to go to work by 6:00 am or 7:00 am. Now, I don't jump. For anything. That's how frail people like me get hurt. When I shower, I must hold the handicapped bar (I'm glad I was too lazy to remove it. Sixteen years. So awesome.) to not fall over. I need to hold the bar to be able to close my eyes as I rinse the shampoo from my twenty or so head hairs. Otherwise, my hips shoot left and right like my knees are a painter's scaffolding being loosened and shaken by shithead little kids. All I can picture is the diapered little baby on YouTube shaking his butt to Beyonce bellowing All the Single Ladies!

Funny, right! Except all I can imagine with my eyes closed (besides the hilarious and come on, let's be completely honest, totally adorable baby video) is the glass shower door just inches away from my ass and shaking right hip. I'm afraid I will finally fall over, take it out and severely hurt myself. So, I hold the handicapped bar a little tighter. With my eyes closed, I shake worse than a drunk man suffering veritgo with Single Ladies stuck in his head. I imagine fate hates me enough that I would actually survive a shower door accident, but it would still tragically take something important, like an entire arm.

That would make sense, actually. That would quickly overshadow the current problems. With every new Book of Job level trial and memoir chapter, I get closer and closer to just renaming the book, "Well, I Suppose Things Could Always Get Worse."

Chapter 1 - They Do. So Much Worse, Dude.
Chapter 2 - Yup, Again
Chapter 3 - Ok, This is Getting a Little...
Chapter 4 - Oh Shit, I Just Lost An Entire Arm
Chapter 5 - Etc.

Amy is not always a huge fan of my making wisecracks about my condition. Sometimes my timing is way off. Other times I sound more sarcastic or angry and not lighthearted. Or yet other times, I use phrases like "once I'm dead and gone...". So, I've been working a lot more on my timing, at least! Also? Cool little thing, guys... check it out... at least I'm trying to make jokes. Maybe my smartass comments being funny or not funny is less than relevant at this point.

For a couple months now, I have just prayed to God to please let it stop getting worse every week. I'm going to let you in on a secret. To be completely honest, so far His answer has sounded remarkably identical to, "NOPE".

In fact, my seizures have worsened considerably in even just the last few days in both frequency and intensity. My continued loss of balance and leg strength has been measurable, even in just the last two days. I almost fall every day and then I finish each night with amazement that I have not already fallen. Several times every day, I take a step and my left foot hovers in midair, unsure of which direction to go. I look like Captain Morgan, if he wore pajamas during the day and forgot to brush his beard again. Or his teeth. Disgusting, but true. Anyway! And that imbalance and weakness has just barely, gradually increased every day for weeks now. I often wonder when and where my first fall will finally happen and I think about how much I hope that I can mitigate any serious injury when it does happen. 

Ok, enough with the bad news. Now for the awful news. We found out yesterday that unless I make a comeback in the next month, I will be terminated and let go from my company in September. They bore with me patiently for weeks and weeks, but they only had short term disability to offer, which they even generously paid out of pocket. But they simply need a full time I.T. guy again. Amy's job ends by being outsourced ten days before mine ends, but she has some months of severance at least. That's good, since our health insurance continues as long as she is on the severance.

Two weeks ago, I was assigned a Parkinsons case manager from Neurology. On Monday, I was assigned an Epilepsy case manager, because of my increasing seizures. The worst seizure was last Saturday, when at about 2:30am, I was unable to text Amy or call 911 for almost five minutes. Since then, the moderate to mild seizures every few minutes throughout the day have become part of the regular routine.

The weight loss is still a serious issue, as I still spend the first half of every day with no appetite and with severe nausea. With intense focus on calorie dense protein shakes and large meals in the second half of the day, I was finally able to gain 4 pounds this month. But I am still drastically underweight.

Well, this was a cheery blog. Bye bye for now!

Ok fine. This is where I say something philosophical or funny or inspirational or religious, right? Or, maybe I could blow up and rage against the fucking unfairness of it all? Because that is always super helpful.

I've told Amy and my mom that if I progress any further to requiring a wheelchair, I will then want to quickly plan to go out to New York to visit my dad a final time, before travel becomes any further prohibitive for me.

Despite all this happy horseshit, I am excited about the memoir I am writing and the fellow writers I have been able to work with recently. As I've struggled with memory loss and confusion, their interaction is so valuable. There is also a good chance, despite all this, that I may take another writing class in the fall.

Thank you all for your thoughts, prayers, texts, calls and visits. It means the world to me, especially during the hardest time that Amy and I have ever gone through.

And there is easily a 4% to 5% chance that I won't have even more awful news in my next week's blog, so stay tuned!

What? That was funny!


  1. This is not funny anymore, kid! Time to go ninja and get those doctors' testing every orifice.

    God doesn't give you more than you can handle, but we all have bench pressed Buicks and it is okay to say "Uncle" enough is enough.

    And it is okay to get pissed at circumstances but know God can and does heal. Like the leper that dipped 9 times before the answer - one never should give up, and give in until God says enough, "Come home to me."

    I pray for a breakthrough and healing for you, because like Amy, I believe this is a trial and you will win the battle.

    I love you!

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