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!