Five More Years and HD

Luckily, not many people can say they know what it feels like to be given an expiration date on their lives. We all know it could happen at any time, and we hope that it doesn't for a long time. But being given a prognosis and a deadline is very hard. In my particular situation, I don't know specifics. Based on the experiences of others I have heard from, my body might not die for another 30 years or more. Obviously that is a good long time. Unfortunately, for me, this isn't the only deadline. There is another concern.

My brain is going to start dying much sooner than my body. MUCH. This disease can last for 20 years from the first symptoms. I know of people that start having symptoms at 30. Hence the title of this post.

I might only have five more years before my depression starts.

I might only have five more years before my memory starts going bad.

I might only have five more years before I start to become a different person.

What would you do if you knew you only had five years to be the person you are today? It changes everything. What should I do now while I still can?

I don't want to be a different person. There is no way around the fact that these changes will not be for the better. Losing yourself to this disease it worse than the eventual death. Much worse. I won't have the same thoughts or feelings. I won't be able to do all the things I can do now. I won't be the capable, intelligent, happy person that I am today.

When I do silly things and have trouble with my memory, I already think, Is this HD? I usually have a great memory so it is worth questioning. When you research this disease, it may seem like symptoms happen later in life. But I think for a self aware person, it could be seen that the deterioration happens even sooner than expected. It may be slight and slow, but we just don't know for sure when the symptoms will start.

For anyone who has looked into what happens to someone with HD, let me just say, I DO NOT want to live like that. I don't care how it sounds when I say that I would rather be dead. Maybe I am selfish or spoiled by who I am today, but I do not want to live for years as someone else. Someone lesser. This disease takes a toll. The care I would need would drag down everyone I know.

How do I want to spend my last five years as me?

I want to travel.

I want to spend time with loved ones.

I want to have children and teach them what I can.

I think I need a bucket list.

Couldn't I do these things later?

Not really. Not the way I want to.

I remain hopeful for better medications and treatments for this disease, but I need to also be realistic. Turning 30 will be really sad for more than the usual getting "old" reasons. My life as I know it is too short to do anything I don't want to. I need to start living like I am dying.

“So many people walk around with a meaningless life. They seem half-asleep, even when they're busy doing things they think are important. This is because they're chasing the wrong things. The way you get meaning into your life is to devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning.” 
― Mitch Albom, Tuesdays with Morrie