I wanted to share a story with you that occurred on Friday, the day you have waited to arrive all week long. I returned to work from my lunch break and found that the internet was down. After polling nearly every person in my office, I discovered that it was only my area that was without the internet service. Of course, this prompted the routine, one I am sure everyone is familiar with, where you check to see if there are any obvious reasons why the internet would not be working.
After closer inspection, I realized my purse had knocked the phone connection from the wall. I went to plug it back in and I accidently knocked the plug inside the wall. Whoopsie daisy!
I tried to pull it back out, but no success. So I got up and asked around to see if anyone had a flat head screw driver that I could use to unscrew the unit and retrieve the plug that was now residing behind the wall. Of course, none of my co-workers packed their flat heads on the way out the door that morning so I had to improvise.
I decided to raid the office supply closet, but all I could come up with was a letter opener, a scraper in the paint supply box, and a knife. So I did what any person in need of a flat head screw driver would do, I grabbed them all and headed back to my desk.
Looking back, all of these seem like pretty darn ridiculous choices for the task at hand, but I had a problem that needed to be fixed so I was going to give them all a try.
As you can imagine, the letter opener was a fail, knife also a fail, and there I was on my last, and seemingly ridiculous, option of the scrapper just trying to get this tiny screw off so I could restore my internet service and get back to work. After what seemed like an eternity, I was able to wedge the tiny angled corner into the teeny screw enough to get it to turn an itsy bitsy bit.
After reinserting it and moving it maybe 10 degrees each time the screw was finally coming out, a bit of a tedious task, but it was working so I kept at it.
The second the screw came out, I was overwhelmed with a feeling of exhilaration and I celebrated my victory with some serious mental congratulations, maybe some out loud congratulations too. Yet, in the middle of my victory celebration, I was hit by a flood of memories that had long been forgotten.
My dad always taught me that although there will be many obstacles in life, sometimes the biggest obstacle of all is that you will not have the right tools to deal with your problem.
Even so, the problem will still need to be handled. Therefore, you have to make do with what you have available and figure it out!
The scraper and its ability to get the screw out of the wall, even though that it is not what it was intended to do, reminded me of how handy my dad was around the house in such a unique way. He could fix anything… until his disease began to set in. The sicker he got, the harder it was for him to fix things and continue being the mister fix it that he had been my entire life. As his disease progressed, he went from fixing anything to basically coining the phrase “Dad likes to fix things with duct tape”.
For me, this change of pace was especially infuriating because as things would break, I could not grasp for the life of me why we could not just take the item somewhere to be fixed or buy a new one. Of course, this was a time in my life in which I had zero understanding of how Huntington’s disease (HD) worked or why these changes were occurring. Now, I can look back now and understand why, but at the time it was impossible.
There are many time in my life when I have these epiphanies as to why things happened a certain way, what lessons I learned, and why the hell it was necessary to go through them at all. Right now is one of those moments.
I realized the significance of why I was given every wrong tool to deal with my problems. My dad was preparing me for the harder days in which I was going to have to improvise and on occasion fail, sometimes multiple times, before each triumph. Whether it be as asinine as using a scraper to unscrew my phone line or as significant as finding purpose in life, all of those things have proven to require more failed attempts and new strategies than I ever expected. I always say HD took over my dad’s brain in way that made expression of words very hard for him, but he taught me through his determination and continued attempts so many lessons like this one. I have been so lucky to have him for so long!
Also side note: In no way do I believe that my internet being down was detrimental in anyway, it is very insignificant in the grand scheme of things. However, it helped me get in touch with this life lesson from my dad. You see, for me, one of the hardest things in my HD journey has been being able to separate the disease that has taken over my dad’s thoughts, actions, and existence from who he was as a person, what he stood for and believed in before the progression of HD, which are polar opposites.
It is very easy to get mixed up and forget that his actions are not his own. I still struggle with this and have to remind myself every single day that this is not “him” this is the disease. Being able to separate those things takes time and energy and it is exhausting, but it helps me stay dedicated and that’s what matters most to me.