Tag: Huntington’s Disease
Don’t Wear That Weight
It was not my intention to write another post so soon; however, when something hits you, you have to respond. There is no way to sugar coat how yesterday went for me. I went to the nursing home where my dad has resided for the last two and a half years, and it was a very awful and unsettling visit. On a normal day, when I walk into his room, his eyes
light up and I am greeted with a giant smile that spreads from ear to ear. However, today, it was as if he was just looking right through me. His big blue eyes were blank and there was no smile. He was so out of it that he barely even responded to me.
He could have just been having a bad day, since every single day is different with HD, and that is what I am praying for. However, this was not the only thing that was off, but I am not quite ready to relive all of the more painful events that happened during my visit.
Even so, no matter how awful today was, it serves as a reminder to me of my mission with this blog. The reason I am writing is to say that there will be many difficult days. Some days that will knock the air out of you and drag you across the ground, which is how I am feeling right now, but I want you to know that this is okay. Not every single day can be sunshine and rainbows, but the most important part is picking yourself up off the ground and moving forward when days like this happen. Even when you feel like you cannot breathe and there is an 800 pound man sitting on your chest, you have to dig deep to push
that jerk off and pull yourself out.
It is perfectly okay to take some time to process what has happened and to go through the emotions, but you absolutely cannot stay in the “sad” mentality for too long or it will take over. It is up to you to fight back and not let it win.
The weight of the world we place on our own shoulders is far too great to continue to bear.
It truly is such a toxic way to live your life. So I implore you, grab your shovel, your spork, your ladle, or whatever tool you can find and dig yourself out.
I honestly believe that part of why we consistently think, “Oh, here’s another bad day” or have this crappy Monday mentality is because we hang onto something that maybe went wrong for 10 minutes and use that as an excuse to say, “Dammit, here’s another bad day”. When 90 percent of your day was good, do not use an excuse to ruin it.
An excuse like your shower suddenly turning from a stream of hot water to a death trap shooting frozen ice cubes at you because you set out amazing Mountain fresh smelling towels in the sink and accidentally turned on the HOT water, which in turn soaked your fresh towels and drained all the hot water while you were knee deep in a hair mask that
you desperately ‘needed’. Too specific? That was actually my real-life Monday scenario.
Normally, I work out every morning before work for energy and a sense of well-being, but this Monday morning I did not because I did not set my extra early alarm (first mistake), but I choose to turn things around instead of dwelling on the negative aspects, even though the universe appeared to have other plans.
I woke up a little bit later than I wanted, the shower situation occurred, and instead of letting it get me, I leave the house 20 minutes early to treat myself to some Starbucks because I earned it. Am I right? Boom, behind an accident by the Hostess sign and I sit on
the highway for 25 minutes making me late for work, no caffeine and no breakfast. Once I finally made it to work, I realized I also have no food. So, as I am only using one brain cell because I have not had coffee yet, I realized I had a decision to make, I could either A.)
let the small fraction of unfortunate events ruin my day and send me wallowing in self-pity, eating tacos and cheese dip for lunch or I could B.) laugh at those ridiculous early morning situations and make it an awesome day. Which do you think I choose? B, the good day -duh, because I know option A is just using excuses, which will ruin (and
waste) an entire day, and I ain’t got no time for that. Therefore, Monday was a good day because I did not let those bad things outweigh the good!
This brings me to an important point I feel I must make. I have concluded that a majority of the things that we are so caught up in life are all so short-lived and stupid. I believe that if we were able to look at the big picture, we could see that they really do not matter. Therefore, my advice to you; let that shit go.
those who read it. I want my page to serve as a place where one can go for a pick me up when it is needed. I also want to use this space to share my journey as a caretaker of a parent with Huntington’s disease (HD).
My mission in life is to help others, whether it is to help someone see past their diagnosis or assist someone who is having a tough time, and show them that they can still have an amazing, fulfilling life. I am a firm believer that the minute you stop focusing on the parts of your life that you cannot change or those in which you have zero control suddenly things begin to look very different.
Trust me; I know what it is like living life fully aware that I have a 50 percent chance of meeting the same fate as my dad– you are not alone. I am also very familiar with the feeling of not wanting to get out of bed and deal with life, but I want to show how perspective can be an amazing way to cope with the unknown.
This idea of this blog is not new to me. In fact, I have started writing it many times, only to decide against it out of fear of exposure of vulnerability. However, I was recently searching for support materials and books on HD and found them to be nearly nonexistent. This prompted me to take the leap to ensure that those who need support or a friendly voice in this fight have somewhere to find it.
Even if this blog only reaches one person and helps them feel less alone in their situation, then the leap is entirely worth it. I am no doctor, I do not have any degrees regarding the subject, and I am nowhere near a writer of any sort, but what I am is someone who wants
to help make a difference in the world, especially the world of HD.
I can assure you that there will be endless typos, run on sentences, and commas will be missing, but that is not what I am here. I am here to inspire those who read this and lift them up when they need it. There is a chance that no one will read this, and that is okay too. I am sure that this will serve as much as a therapeutic tool for me as it could for others.
This is a judgment free space and I am hoping to maintain a judgment free zone as long as this page is up. One of my main goals, as previously mentioned, is to provide a space that is full of love and support that I feel the HD community is missing. The angels on earth
known as social workers can only do so much.
I made a deal with myself in 2016 that I was going to work on communicating more effectively with all of those around me. I have never been one to talk about my feelings or struggles with anyone, which more than likely stems from growing up in a home where no one openly discussed or even acknowledged feelings. Even so, I began having this urge to get my story out. I wanted to share my hopes, dreams, and fears. I wanted to share it so others know that they are not alone, and writing has always been the easiest outlet for me.
My ultimate goal is to help someone find his or her inner badass warrior I know that no matter what you are going through that badass warrior IS in there somewhere just
waiting to be unleashed!!! Please know, that no matter how deep you are in, there is always a way out. We need to band together and offer kindness and acceptance to every single person we meet!