So, what would you do if you knew you were going to die before the age of 50 and the last 10 years of that life would be in various stages of dementia?
I teach introductory biology at the college level. Every year about this time I am finishing up the genetics portion of the class, specifically inheritance. We talk about dominant versus recessive traits and what they mean for diseases, such as Huntington’s Disease.
Huntington’s Disease is determined by a dominant gene. What this means is that if you receive the defective gene from your mother or father, you will have the disease. This is in contrast to a disease like Sickle Cell Anemia which is a recessive disorder, meaning you must receive the defective genes from BOTH your parents. If you have Huntington’s disease (a dominant disorder) and you have children, there is a 50% chance that your child will also have the disorder. It would be like flipping a coin, heads your child has the disease, tails they do not.
What is Huntington’s Disease (HD)? Huntington’s is a disorder that affects the nervous system. People with HD will lose muscle control, and most noticeably, loss of mind control. They will eventually develop the characteristics of someone with Alzheimer’s and then die. Currently there is no cure. Once symptoms begin, the life expectancy is 10-20 years. Symptoms can begin as early as age 20. Although there is no cure, the test to determine if you have HD is relatively simple. As a matter of fact, we simulate testing for HD in the introductory biology lab.
So, why am I writing about this? Well, every year I ask my students a simple question: If one of your parents had HD, would you want to know if you have it? There is a 50% chance that if your parents have HD, you will develop it as well. I generally get a 50/50 split on those that would want to know and those that would not, however, if a students wants to know if they have HD, the reason is always the same. I have paraphrased the most common reason below:
“I would want to know if I have HD because I would live my life differently. I’d have more fun, do the things that I want to do, knowing that I would die in the relatively near future.”
And my response is always the same:
“Why aren’t you living your life that way NOW?”
So, my question to all my readers out there is; “Why aren’t you living your life that way NOW?”
I am always amazed at the number of people that I meet that are miserable, I mean just plain miserable. They hate their jobs, they hate their marriage, they hate people, and in general they hate their life. Don’t get me wrong, I hate people, but I don’t hate life. I love my life. It is not perfect, but there really isn’t much I’d do different if I knew I were to die tomorrow. Actually, that is not true, if I knew I was going to die tomorrow, I certainly wouldn’t spend it at work, but if I knew I was going to die in 10 years, I don’t think I would quit my job. I like my job. Trust me, my life is not perfect, but I can honestly say that I would not plan drastic changes for my life.
What I think the Huntington’s Disease question does is make you think about how you are living your life. Are you living a life that you are proud of? Happy with? Or, like my students, would you make drastic changes if you knew you would die in 10 or 20 years? Do the people in your life know that you love them? Are you making choices that make you happy, or are you waiting for the world to be different so that you may reap its benefits? Trust me, if the latter is you, wait no longer, because the world ain’t changing.
If you believe in God, are you right with Him? If you don’t believe in God, are you OK with that? How will people look at your life after your gone? “I can’t say much about Frank, but one thing I do know, is that man loved to sit on the couch and watch TV.” Will this be you? Funny thing is, that is partially me, and I am OK with that. The bottom line, are you OK with things, knowing that one day you will die? I’m not saying eat, drink, and be merry, but be right with yourself, and be happy with where you are NOW, for tomorrow we die.
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If I die tomorrow after posting this blog, know this, I died pissed. It doesn’t mean that I don’t believe in what I wrote above, it has more to do with the fact that I HATE irony. If I die tomorrow, you know what people will be talking about, this stupid post. I am almost not going to post this for that very fact. So, if I do die tomorrow, and you are being interviewed about this post, here is how I want it to go down. “Excuse me miss, it is my understanding that you read Brett’s post before he died? How did that make you feel? Was it eery?” Here is what I want your response to be:
“Post, what post? Ohhh, the one about dying? Yeah, that sucked. No, not that part about him dying, but the post. It just wasn’t his best. He even bragged about it as one of his favorites. Honestly, I just didn’t get it. I did like the post about the McRib though. Mmmmmm, McRib. As a matter of fact, I’m heading to get one now. Gotta run. Peace!” [Give your back hand of the two-finger peace sign and bounce].
Then the McRib has it’s best-selling year EVER! How could you not think of me every time you saw the McRib. Pure Awesomeness! I’m just sayin’ …
I agree for the most part. One difference might be doing things you thought you were going to have more time to do, a bucket list. It really isn’t practical for most of us to live our lives that way when we don’t know how long we have. To quit my job now and do and see all the things I have ever wanted to, and then die 40 years from now is not really in my best interests. But if I only had a year or two, and I knew it, that would be a different story. I promise you this, that Aquaman feature film would get made. Unfortunately some diseases, like Huntington’s, don’t allow you that time in the last few years. It might be advisable to take advantage of the time to do your bucket list at year 10. A friend of mine, who does not have the disease, had a sister who died from it. She was incapacitated for most of year last couple years. Horrible disease.
I would want to know and I would do things differently but I would be just as happy. I wouldn’t spend 15 of those years in undergrad/medschool/internship/residency tho. Thirteen on House is ridiculous! Especially with the cost of med school these days. That chick is crazy. (Hope you watch House!)