Sunshine Triumphs Rain

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!

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.