Motivation in the Darkest Times

My family is mourning the immense loss of my very young cousin, Geno.  
This has been very difficult to write because his passing was very sudden and it is so close to all our hearts. Geno bravely fought against Huntington’s Disease (HD) after watching his mother succumb to this debilitating sickness. He carried on even though he feared that he may fall victim to the same illness that consumed his mother only to be dealt a blow that yes, he too, was going to face her genetic mutations and would develop the disease. Geno leaves behind beautiful children and a family that are not ready to live without him and
because of this monster of a disease they have a giant void now where their dad should be.

Even though I feel as if my breath has been stolen from me, I know that this will only further my resolve. It will push me to fight even harder and continue to push ahead with my efforts to raise money through HD walks and for the families that we adopt each year to lessen the burdens around Christmas, which is supposed to be the most magical time of the year. The money raised at HD events like the walk directly impacts families, like mine, that are affected by HD by providing funding for desperately needed research to end this nightmare that we call a reality. We have to end this madness because no one deserves this. Of course, I have not fought alone and I cannot thank everyone enough for all of the support, financial and emotional, over the years. I will never forget what each of the people in my life have done for me and there is absolutely no way that I could ever thank everyone properly for all they have contributed.  My hope walk team raised almost $3000 for the event!  I’m floating with determination!

Like many living with the unknown, I know what carrying this abstruse burden is like, and how it affects every decision I make. Every decision, whether it be long-term or short-term, they are all affected because they are weighed against the possibility that I may someday develop HD and how it would affect that situation. For most people it
is incomprehensible, but for people like me, it is our daily existence. Simple decisions that are easy to make for most, are gut wrenching and life-altering for us. Should we get married and risk potentially subjecting our partners to a life of managing every single
daily task for us, no matter how small and simple? Feeding us, bathing us, taking care of the house, and the bills. Should we have children and expose them to this type of  existence? Would our partner be prepared to take care of the children on their own if it happened? Even worse, would we want to risk passing on the potential to inherit
or develop this disease to our children? Should we go to college knowing the possibility that we may never work in our fields after dedicating so many hours to our studies? Should we buy our dream house since it is very possible that the state can come back and take your assets when you need long term care? Everyone, at some point in their
lives, has wrestled with these questions for some reason, but, as you can see, when HD is involved, these questions and the decisions carry much heavier burdens and consequences.

Even so, when you are faced with mortality in such a vicious way that is Huntington’s Disease even just waking up in the morning is a reason to be grateful. Another day with the chance to truly live is something incredibly precious. When you are a caretaker this is especially true because life is often dangled in front of you in such a cruel way. You
have constant fears of your loved one choking or falling or getting hurt doing something taken for granted by so many. Every meal that is eaten without incident is an achievement. Every trip up or down the stairs, taking shower and getting dressed is a victory because with HD, these mundane tasks suddenly become MAJOR defeats!

Trying to make sense of why these things happen can be a tedious and never ending journey, and heading down this path can take your life into so many different directions. Some of those travels turn out to be dead ends and they leave you in the middle of nowhere wondering how you got there and how the heck you get back. Others lead to adventures you may have never been a part of if you did not try to figure it out.  Of course, there are some missteps you will encounter while you are on the ‘wrong’ path that end up as blessings disguised as mistakes, but only if you have the courage to explore them.

People sometimes ask me ‘does it ever become too much?’ I guess if I really wanted to tally up the things I have been up against-yes, it is a pretty damn long list. It has also been an incredibly overwhelming ride, to say the least, and I still struggle every day. However, I prefer to think of myself as a person who has seen much darkness but
who chooses to move past it and use it as an inspiration to never let it ruin me or who I was meant to be with or without HD. When facing the potential to develop any terminal disease, one can easily succumb to the negative that comes with the fear of the unknown, but I feel it is so important to count my blessings every day and call on my experience to drive me to live life to the fullest. As I have been fighting these battles over the years, I have been taking notes and taking in every lesson as it comes my way. I can tell you, at this point, I have one hell of a heavy note pad full of experience to draw upon!

Every tragedy I experience, I try and learn a lesson from it, which seems to be my way of putting my heartache to work for me. One of the greatest tragedies that profoundly shaped me was losing my best friend at such a young age. Losing Geni has been something that has molded me into the person I am today because when I lost her, the reality sunk in that no one is safe from death and unfortunately, we are not allowed any indication of how or when it is going to go down. This realization makes you face life head on and reminds you to enjoy every second of it. No matter how young, how beautiful, how kind, how selfless a person may be they can be taken abruptly and without warning. From the moment you enter the world, the only thing that is
guaranteed is that one day you will die. What you do with your life in between is up to you and ONLY you to make it count!

Understanding mortality creates an urgency to go on the dream trips, take extra time to meet for dinner, talk about your problems and hash them out. Life is so short. I have seen it, lived it, and I cannot stress it enough. You must surround yourself with the people that build you up as well as the things you love to take full advantage of its sweetness. Buy all the shoes, dance on all the tables, and eat all of the cake! Just get out there and make your life count!

If at first you don’t succeed

Silly story.


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.

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.

Better Together

Over the years, I have experienced many of life’s highs and lows; I  recently decided that I would begin writing a blog in an effort to share these experiences and life lessons. My hope is that my story, and what I have learned, will bring some sunshine and positivity to
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!