What HOPE means to me


As I sit here pondering to write this article, I wonder what people may think about me as they read it. Should I make this a "fluff" piece, should I "sway the truth," or should I "speak from the heart"? Well, as you get to know me, you will see I write from the heart. The good, the bad, and the ugly. I try to write as openly as I can. So keep that in mind when you dive into what HOPE means to me.


The definition of HOPE is:

"A feeling of expectation and desire for a certain thing to happen."


Looking at this as a person with HD, I can tell you I lost hope the day I received my positive gene test results (pre-symptomatic), and again the official diagnosis (symptomatic) was given to me.

I was angry, why me, with everything that has happened to me in my life and NOW THIS!!!

There was no "catching a break" for me.


I had no hope.


I felt like all odds (50/50) were against me, and there was nothing I could do to make that outcome better because, let's be honest, I was diagnosed with a terminal disease - where is the hope in that.

As the time past and I tried to move on, I still hadn't come to terms with having HD. I would talk and share my diagnosis with people, but I never personally felt an internal connection to it. To be honest, looking back was because I paced it in my head inside a safe that not even I had the code to unlock.

Now, Michael, my husband - he has HOPE.

He reads everything he could about HD, research, news, trials - you name it he reads it.

It's his way of trying to "fix me." So, having hope that a cure or even more medicine options are a way for him to get through each day. Without hope, what else does he have?

I love him more because of it.

However, I do look at him and make comments. I even roll my eyes when he tells me about new trials and research. That's because, without hope, they don't matter to me. Having hope gives you that drive to believe something better is going to happen.

I want to believe that in my lifetime there will be a cure, I want to believe that we will have more effective medicine than we currently have, and I want to believe that I will be here longer with Michael.

I struggle thinking that there will be hope for my future. I will, though, promise to everyone that I will have a more positive outlook about my future and how I live each day - and for me, that's a start.

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