I’ve tended to preferentially highlight my good days living with this shitty disease. I mean, who really wants to write about a bad day, or a negative experience or shudder…admit to some kind of weakness.
Just why is that?
Well, I think that we feel judged by the world. Sometimes, we’re our own biggest critics.
And all of us at one point or another have been made to feel awful by some insensitive a**hole. I’m not being condescending. Many of us have played that part. I am that a**hole from time to time.
I have at times been too wrapped up in myself to notice that someone had opened a door for me to provide (presumably) much needed sympathy, compassion, or support. Instead of recognizing this vulnerability, I slammed the door in his face with some callous remark. If I’ve done this to you, I’m sorry. I deeply regret having done that.
So to prevent this kind of pain, most of us tend to put on a bit of an act. A show.
My Blog might as well be titled, “Welcome to the Eric Slominski Show!! Step right up and witness this badass show life who’s boss! On This Page is his Shrine to Himself!”
But let’s forget about that for a moment. Because I’m feeling like being real with you guys. Because really I owe to you, dear reader. Believe it or not, I think we need each other.
Stick with me here.
Life at times can feel so lonely, can it not? I tend to internalize my struggles. The last thing I want is to appear…vulnerable. But guess what? Underneath my hardened exterior, put in place to protect me from the aggressive blows regularly delivered by life, lies a remarkably soft interior.
Sometimes, I just need a bro hug.
Despite our tendency to fabricate the images of ourselves that we want others to see as a protective shield of sorts, we absolutely rely on one another for support. For the strength to carry forward through this sometimes wonderful, occasionally terrible experience called life. The trick is knowing when someone needs that support. I know that when things are going well for me, I can be pretty insensitive to others needs. I’m working on that.
The truth is, sooner or later, life is going to beat you up a bit. That’s when you need someone in your life to lean on for strength.
I used to struggle with anxiety. Well, I thought that was in my past. However for the past couple of weeks I’ve been more anxious than I have been for a long time. I’m not exactly sure why but I think it’s very likely due to sustained stressors at work. It’s not works fault. My job doesn’t have to be stressful really. I think it has more to do with the unrealistic expectations that I place on myself. So I tend to try to put up a “show” of sorts at work as well. Well, despite my best efforts, the man behind the curtain has been exposed.
As the head mechanical engineer for an effort I’m working, I fairly regularly have to go into the office to provide briefs or updates of various kinds. In a recent routine brief I was supposed to provide an update on the current status of the design of an important piece of equipment. This shouldn’t have been a big deal. In fact, to give you an idea of the scope of the brief, it was only a handful of engineers and the project lead. Maybe about a dozen people. I consider many of them my friends.
So it should have been a relaxed atmosphere. But me, being hyper-concerned about…what? I don’t even know really…was anything but relaxed. Still…I didn’t expect the ambush.
When I started briefing, I soon found that I was having difficulty projecting my voice. Not an uncommon feature of Parkinson’s disease. I attempted to simply speak louder. As I struggled to project my voice, people were still having trouble hearing me and started to ask questions. Now, I’ve had trouble speaking before. But the degree of difficulty I was having speaking was alarming, even to me. So now, I’m starting to get more anxious…because now I see the Parky ambush coming. That’s when things spiraled out of control.
Verbal and non-verbal communication is more complex than it would seem at first. A phrase can take on very different meanings depending on how it’s delivered. Very subtle changes in your tone, voice inflection, and body language help convey the message we wish to send. When I’m speaking and I’m not “Parky”, these things happen automatically. But as I’m gradually slipping towards the gaping maw of this Sorlac called Parkinson’s, I’m increasingly having difficulty with the fine movement necessary to communicate well. That means I’m stiff, I’m shuffling my feet, and I’m sloooow. Both in my physical movements and in my mind. And of course, all the nuanced communication tools I would normally have are stripped away. Because I’m having so much trouble croaking out answers I’m keeping my responses short. So much so that I’m not providing satisfactory responses. The questions are now coming in faster than I can react. The project lead (who knows I have Parkinson’s) is getting angry. He’s concerned that I haven’t taken into account important factors in the design. But there are a few things that he didn’t realize in that moment. 1) This is, in fact what Parkinson’s can do to me; and 2) I have most definitely taken into account those factors he is concerned about but I’m presently far too Parky to adequately allay his fears.
It was a fairly humbling experience. Many, if not most people in that room knew I have Parkinson’s. None of them really knew what that meant. They do now. For those that got frustrated with my lack of answers, I don’t fault them. I’d probably be frustrated too if I were in their shoes. I only ask that they start to realize that some people have invisible struggles. Not all disabilities are readily obvious.
So overall it was a tough day. By the time it was all over, I was absolutely drained. When I’m Parky like that, it’s exhausting.
You would think I would be able to quickly recover and carry on, after all it was just mostly a group of colleagues. Life will go on. But it seems that since that blow to my ego occurred, my confidence has not been the same.
This week my Parkinson’s symptoms have been terrible. I’ve been stumbling around like a drunkard all week. This is new to me…and my colleagues. I’ve been told twice this week that I should go home because there was concern I was going to fall down and hurt myself. I’ve managed to arrive totally unprepared and provide an distinctly underwhelming brief on something I’ve worked hard on (and should be quite proud of really) to an important friend of the organization. My boss was standing nearby and I’m pretty sure he was not amused. The struggle goes beyond work as well. When I’ve gone climbing recently, my movements have been pretty badly effected. The same at BJJ. At home, lately I’m uncharacteristically shuffle shuffle, shuffling all over the place.
So what, exactly is the matter with me? How do I get my Mojo back?
Well, I’m hoping that by simply getting some of my recent struggles off my chest will help. Maybe by relaying these experiences to you, dear reader, this will help you in some way? By being open and honest about my struggles, maybe that will help you to see that you’re not alone in your own challenges? Writing about these things helps me too. In fact, as I write these closing words, the spring sun streaming though the window, I realize that I’m already feeling less tense. Less stressed. Less Parky.
Oh and one more thing. Remember that we all need somebody at times. Try to be present enough to recognize this fact even when you yourself are not the one in need. I’ll do the same. Together, we’ll make little steps toward making the world a better place for everyone.
Hopefully I’ll soon pull myself out of this funk. I’m feeling better already.
One thought on “Bad Days”
Hi buddy. The struggle is real. My nurse practitioner says I have 4 years tops before Parkinson’s disease will make me retire. Until then we do the best we can. Before I had this disease I had no idea of the many ways it affects us. Most people dont get it. I told my colleagues if they ever feel i can’t pull my weight to come to talk to me privately. I want to work, but I also don’t want to hurt my team.