Life can be such a strange thing sometimes. You are cruising along and everything is going great, and then out of nowhere life nails you. Bad things happen to good people all the time, leaving us with the choice to either sink or swim. And while swimming is tiring, sinking is not an option.

I know back in 1997 when I found out I was at-risk and then tested positive for HD the Drs told me it was unfortunate that I had not been raised with my HD family, because I would have had people to mirror myself to. I would have seen my HD symptoms in other family members and they would have seen them in me.

All HD families have so many tragedies in their family tree like my own family tree that is riddled with people who died way too soon. I lost my HD Grandmother before I was born. I often think about how much we would have had in common, had she lived a full life. Her three siblings all died of HD as well, including one who died of JHD. I have lost two uncles and a Father to HD as well. I cannot help but to grieve the lost opportunities of having these role models in my life.

There are obviously some things that we have no choice in, Huntington's being one of those things. But we still have the ability and the choice not to let Huntington's win -- to choose to live life to the fullest despite having HD, to focus on what is left, rather than what has been lost. We have an opportunity to rise above the HD label and show who we really are.

Opportunities really are Golden because it gives us choices at ever turn on this journey. It is both the opportunities we took and made something of, and the opportunities we wasted in life, that has shaped us into who we are. People are the authors of their own lives, and they live with what they themselves create. Good or bad.

Missed opportunities appear all through life. Regrets are a waste of energy and will only bring you down. But if we are lucky the opportunity will present itself again, and we can choose another path. We always have the power to change our lives for the better, but sometimes we lack the courage, or the strength, or the know how of how to change things.

Try to live life rather than letting it pass you by. You only get one shot at this lifetime. Try new things. I guarantee you will have a lot more fun by saying yes to new experiences, then by saying no. Try to shake things up a bit to jumpstart your life. Make a list of things you want to do while you are still able and try to do as many of them as possible.

Try to make a lot of time for memories and moments, fill your world with life. Connect with old friends or family members who you have drifted apart from. Bury the hatchet with loved ones and move on. Try not to let yesterday use up too much of today, because today is all there is, until tomorrow.

Let people in. We have all suffered traumas at some point in our lives. Sharing them with others can be very liberating. We need to cope with trauma by acknowledging that it affects us, or has affected us. We can choose to share or we can choose to let it fester. Secrets only isolate those people around you who care, and prevent them from being there for you.

I know for myself since being diagnosed with HD I have felt a driving need to tie up all my loose ends, as well as a need to leave my mark on this world before I pass through it. I am hoping that these written words will live on long after I have turned to dust.

I write about Huntington’s because I live it, my family lives it and my HD friends live it. Because I am not in denial about my HD symptoms, and I am still articulate at this point, I feel it is my duty to express in words what some of my HD comrades cannot. HD is a very lonely disease as we spend so much of our time trapped in our own head. Reaching out for us is very difficult. Asking for help is even harder. We lose the ability to initiate communication and need to be drawn out.

Self-patience is my greatest challenge. I get quite frustrated at myself at times. Each time I have to give up doing something it is like losing to the HD Dragon. And knowing when it is time to give something up is half the battle.

One of the things I had to give up was splitting firewood. Years ago my husband said that with my bad balance and my body-in-space thing being out of whack he felt it was now dangerous for me to split wood. My argument was that I had not once hurt myself or had a close call and until I did, I should go on splitting wood. Ultimately, I gave up splitting wood because of how much it worried my husband. (I think it was the way his face was pasted to the window each time I went out to chop wood.)

It is so hard to give in on some things. Giving that up was a hard one for me because I had split wood all my life, enjoyed doing it and was really good at it. Had I been told I could NOT split wood I would still be splitting it now, just out of sheer pride. But because he brought his concerns to light and we were able to discuss it and I had to agree that he had some valid points. But in the end the final choice was completely mine, and that is how it has to be.

Each ability lost is a piece of ourselves lost and I think that is why we fight giving things up. On the surface, it is a reasonable request, but underneath that it is a loss of self. And each loss we have previously surrendered to, we tend to hold on that much tighter to what is left. That can make us look unreasonable on the surface, but when you look deeper down you will see a person struggling to hang on all the things that make them who they are.