Is This Thing On?


I’ve always had a, shall we say, short attention span for stupidity. From the blonde girl (Sorry blondes of the  world. This one is the reason the stereotype exists.) that once dumped a full mug of beer all over my bar so she could look at the bottom of it, and then stated “Hindsight is 50/50.” afterward, to the passengers who came on the cruise ships I used to perform on asking questions like “What’s the altitude here?” and “Does the ship generate it’s own power?” (Honest! And the worst part of it is there are several more I could tell you. Maybe I will at the end of this blog.) Discussing this disease with some people has stretched my ability of restraint to new limits, at times. It can become frustrating as hell. The toughest part about it is that I know most of these people mean well. They just don’t realize how callous certain things sound when they  come out of their mouths. Their brains just don’t figure out that saying something like, “Man, I wish I had a good reason to get out of doing lawn work.” really isn’t what someone who has the reason of a degenerative disease wants to hear. They forget, as they are speaking, that the same ‘reason’ that gets me out of lawn work also keeps me from things like golf, or a hot afternoon sitting out on the screened in deck with my wife, who designed and built the structure herself. I helped a little, but I was really just an extra pair of hands for her when our friend, Chris, who had carpentry experience wasn’t available. (Thanks Chris!) The irony  of that is, I was diagnosed with MS shortly after we completed it. These days, I only get to enjoy it for a total of about six or seven weeks worth of days a year now. But, I’ve gotten off point here.

I used to be much worse, dealing with this situation. This disease has caused me to change a bit, though. I’ve gotten better at turning my microphone off when it doesn’t seem to be working any longer. I’m much better at just walking away, or simply clamming up and letting them go on. I’m not quite sure that it’s any sort of maturity in the least. I think it might just be exhaustion. I just don’t have the energy to debate or re-explain to someone who just isn’t listening. It’s just not worth the energy, since I have quite a bit less, these days.

Now, I’m not sure if this is a good thing. I haven’t been able to determine if I’m becoming a stonger person, or if I’m just becoming more callous, myself. Maybe you can help me figure this out.

If you have told someone that you have become very familiar with the process of getting an MRI because you have had so many since your diagnosis, stating that is how they track the physical progression of the disease, and the person you are speaking asks, “Why do they have to do so many, if they  already know you have it?”, is it wrong to want to hit rewind, let the conversation play from the beginning, and just walk away letting them recap on their own?…………. I’m sorry. I said I was going to be honest as I could be, and I wasn’t just then. Is it wrong to want to put a hand on each of their shoulders, look deep into their eyes and say, speaking through clenched teeth, “I just fucking told you why!”

I don’t do this, but boy howdy do I want to, sometimes.

Or when someone who has just learned I have MS says, “You don’t look like you have MS.” Yes. I know. This is when I launch into the explanation of why it’s called the ‘Invisible Disease’. Yes, I know I was just as naïve about it before I was diagnosed, but it’s amazing how quickly you get accustomed to having prepared responses to these questions tucked away in your back pocket. Trust me. I recognize how ignorant I was, but it doesn’t change the fact that it gets old real fast when you experience the other side of it.

It’s also difficult to explain why I would tell someone that I have it. I imagine, no I’m sure, some people think I’m just looking for sympathy. I assure you, I’m not. I’ll try to explain why.

I know that my mind doesn’t work the way it should, all the time. As I’ve stated before, at times, it’s very difficult to keep my attention on something. Even when it’s something I am deeply into. My brain just won’t latch on and take hold. Hell, it happens when I’m writing. The problem is, I don’t want the person I’m engaging in conversation to think I’m intentionally being rude. I want to make them understand that there is a reason my mind drifts off now and then. Especially if I’m having a really bad symptom day.

Sometimes, the tremors are so bad, it looks like I’m agreeing with everything someone is telling me. I simply can’t stop my head from nodding. Sometimes I get a massive series of twitches that cause me to toss something right out of my hand, or my hands are so numb that I end up dropping the same item from my grasp several times in a row. It can be extremely embarrassing.

You see, I simply want them to know there is a good reason for it. I don’t want them to think I’m a klutz, or an idiot. In short, I don’t want them to look at me the same way I have looked at someone who has asked me, “What time does the Midnight Special start?”

Ahh. And there is the crux of my situation. It has caused me to look back at the way I have treated people who I thought were below me. It has made me rethink quite a bit of my past……well…..assholiness. I rarely lived by the credo, ‘If you can’t say anything nice, don’t say anything at all.’ If it came into my head, I often said it. Without thinking about what it truly sounded like, or how it would affect the person to whom I was speaking.

By no means am I saying I’m perfect, now. (Ugh, this honesty thing is tough, sometimes.) I still often think these things. Due to the disease causing me to be on the receiving end of the funny looks, whispered comments, or straight up hurtful comments, I try to think twice before I vocalize the thoughts, now.

The problem is, I don’t know if I’m doing it right. By clamming up, am I now coming across as an aloof asshole? Is walking away before I say something sarcastic, coming across as rude? Am I just becoming an internal asshole instead of an outwardly snarky smart ass? I really don’t know.

I do know I’ve become more introverted, physically. I don’t feel the need to be the life of a party I’m attending any longer. Hell, I don’t have the energy. I don’t take over conversations the way I used to. I often trip over my words and have trouble getting them past my lips, now. Yet another common symptom of MS. My mic may not be off, but MS has definitely turned it down a decibel or twenty. The disease is changing me.

Yes. This disease is changing me. I am in the process of learning how to live with the sound turned down, the party more laid back, the show more subdued. My amp no longer goes to eleven. Is this a good thing? I don’t know. It might be. Then again, it might not be. I don’t know where it’s taking me, as of yet. Maybe I’ll end up being a more thoughtful person, or maybe I’ll fully  become the old man shouting “Get off my lawn!” like my wife jokes I’m already close to being. I guess we all will just have to wait and see.

I know this was a short one this week, but I’ve got a headache the size of the state of Texas, and I’ve had about enough of my own honesty as I can take this week. So, I’ll leave you with a few more of the questions I heard asked when I worked on the cruise ship, just to let you decide how you would have reacted. Enjoy…..

“Does the elevator go to the front of the ship?”

“Which side of the ship is deeper?”

“Does the staff live on the ship?”

“Do these stairs go up or down?” (I’ll never understand that one.)

“Why, when I paid extra for a cabin with a port hole, can I only see the wooden planks of the dock as my view?” (Think about that one for a minute.)

And the big winner…..While the pool was closed due to rough seas.

Passenger: “Is that ocean water in the pool?”

Cruise Director: “Why, yes it is. We pump it in through filters straight into the pool.”

Passenger, turning to friend: “See. I told you. That’s why the water is so choppy in the pool.”

Until next time, try to remember, there might be a really good reason for a not so bright comment, statement, or action…………maybe.

 

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