The Monster That Steals


A Monster. It lurks just out of sight. It’s around every corner, in every closet, every room that isn’t lit bright enough to hurt your eyes. The monster follows you, the monster is to your left, and to your right. The monster is everywhere you are. I imagine that it might even be better if you could at least put a face on it, so you could at least know when the monster is coming for you, at least then you would know to take a left rather than that right. You don’t know when that monster is going to show up. You only know that it will.

You will have good days, even wonderful, fantastic, miraculous days, or weeks, or even a month. However, you’ve learned from the past that, My God, a month is too long, a month and a half? Well, that’s just plain terrorizing in itself! You’ve conditioned yourself for the fight but, if it goes too long, what happens then? Am I going to get weak? Am I soft now? Is this the time the monster comes out the other side and I don’t? What if I’m….what if I’m…anywhere but a safe place? What if the monster picks the battleground? I better stay home, I better not, I better stay in bed. I better sleep all day. On the other hand, I better stay awake! I have to be ready for the next round. I can’t let myself be attacked with my eyes closed….

What if there is no safe place? Then what? What if everything I’ve tried, everything I’ve done until now is just wrong? Is there a right and a wrong? How will I know? Even if I ask someone for help, how can I trust that THEY aren’t the pitch black, in disguised just to get the jump on me? I better not trust anyone!

I’d like to play another game now, please! Can anyone reset the board? But, then I remember because the monster reminds me. THIS IS NO GAME! This could be life and death next time.

The problem is this monster is real, but it has no face, it has no form, no color, and no mass. This monster lives inside, and when it gets out…when it attacks…it attacks through ME! It is me. But, it’s not me, not really. Somewhere inside I am beauty, light, and love. I KNOW that I AM – DAMN IT why can’t anybody see me? Does anyone see me? Nobody cares anyway! Do they? Maybe it’ll be easier not to care either.


The above is not a description of my persona. It is, however, how I imagine mental disability feels to those that struggle with it.

It is a part of my life because someone I love more than that person can understand battles mental disability. I am sure I cannot, and have not done it justice. I am only able to write how I feel as an outsider who has deep empathic ties to the people I love.

In the event the monster doesn’t know, I’m calling you out now! I am coming for you, and I have a history. A history of staying in the fight. I will fight to the end because you’ve picked the wrong opponent. You’ve picked someone I love.

I have one word of advice for you.   RUN!


Lessons learned through disability

I’m don’t know who said it, or who thought we should adopt the phrase “failure is not an option” but I’m relatively certain whoever it did not live with a disability. Good for them; I guess? I am certain they lived an overly privileged life to never be introduced to failure. The other possibility is that the person who said it was misquoted, and it should be: Failure is not an option, it’s a requirement.

I have been struggling with failure recently if you haven’t guessed already. Failure is nothing new to me. It’s more a fact of life. Living life with a disability has a way of teaching you lessons early that many wait most of their life to learn. What surprises me about it this time though is that I’m frustrated with myself over it. The problem is that I’m not trying to learn something new, making my body do something it hasn’t done before, or do something in a new way. I expect failure then. I think it was Nicola Tesla that invited failure, saying that he didn’t fail, in fact. He just learned new ways how NOT to do something. His genius and statements like this have always given me drive when learning new things. Of course, I like to combine this with a quote from Chow in “The Hangover” “…but did you DIE?” For me if I failed and didn’t die, whatever I failed at just taught me how not to do whatever it was I was attempting.

Recently I have begun to learn the lessons of getting older and doing so with a disability. I’ve noticed that not only do my major muscle groups tighten without upkeep but my fine motor skills are also fair game. I’ve been an Information Technology professional for about 20 years now. This has brought me through everything from Level 1 call center, to deskside support, to building desktops, servers, running and building cables; I’ve done it all just this side of programming. I understand how to read a good portion of several languages and the logs they produce, I just don’t have the desire to write it.

I mention all of this because my home network is growing past casual use and is heading toward industrial requirements. This doesn’t concern me, but it’s starting to look like the proverbial cobbler with no shoes. I still work in IT, but I do it remotely so my internet use is just this side of business class, I have a secure VPN router just to connect directly back to my employer in Hartford, CT.  My wife also works just feet from me with her businesses, then add in the typical social media and streaming use of two nearly teenage girls. I have network devices, cables, laptops, and PCs EVERYWHERE. I’m currently building a server from ‘bare metal’ up purposely for Voiceover. Here is where I found a problem. I am having trouble making the small connections to the system board. I even bought an adapter (that is supposed to work but didn’t). Next, I want to clean up the network cables so I went ahead and broke out my network tools. The same connections I’ve made dozens of times now cramp my hands and are inconsistent. I have to ask for help and walk my wife through building a PC. I also have to buy new connectors that help me work around dexterity issues.

I understand the lesson here is that YOU are not defined by what you do. However, there is a level of frustration that needs to be dealt with. I also have to come to terms with the fact that what used to drive me I’d rather put it off for weeks. This must mean that new opportunities are coming for me. I’m feeling excited about looking for what may be next. It’s going to be fun!