28. Big Kid Stuff

Nothing gives you the warm and fuzzes quite like completing an Advance Directive with your husband of less than 3 months. Fortunately this wasn’t a new conversation, or one that we haven’t had many times in various forms, but it still seems like a foreign concept, you know the whole death thing and all.

For me, like most things in my life, it’s about the opportunity to educate and doing what I can to alleviate any and all doubt, blame, heartache that accompanies making decisions of this magnitude for someone else without them being able to voice it for themselves. Type A, control freak – but we all knew that about me. It’s really been interesting to have this conversation evolve with each episode of Grey’s Anatomy that Kenneth and I watch; would you want that? if that was us, how would you want me to proceed? and so on.

I’m a blunt and straight forward person (understatement), so this conversation started when I was 15 going through drivers education. My mother and I would discuss the “what ifs” of driving, accidents, and life in general. We are in the same boat as far as no extreme measures, no diminished quality of life, etc. but it’s easy to talk, an entirely different ballgame to execute. I would hate for anyone to have guilt over a decision that I would have made for myself if given the opportunity, hence the importance of an Advance Directive.

I completed this document at my very first ALS clinic, with my mom, Dawn, and Mr. America (Luke) there to support me. Lots of changes have taken place in two years, I met an amazing man and made him my husband. I can still remember telling Kenneth about my ALS on our second date. I had casually played off my terrible bowling score on our first date so that it wouldn’t be tainted with the truth, and then crying two months later as we were getting ready to ‘ring in 2016 as a couple, begging him to get out now if he wasn’t in it for the long run, judgment and blame free, that this was going to get worse before it gets better and that better is death. It’s a lot for a new couple of 20 somethings, but we continued and look where we are now? Married almost 3 months and planning our end of life directives, yay!

I’ve always been conflicted on burial plans: the idea of being buried seems wasteful and constricting; the idea of being cremated seems more logical than being in the ground, but then what? I don’t want to be on the mantle, or in someones closet, or scattered. Weird. Death is weird. My Brett family has always donated their bodies to science, and that makes the most sense to me. It’s my hope that there isn’t anything left after my organs are donated, but ALS is a sucky, mean disease and I’m realistic enough to understand that any organ donation will be a blessing. The idea that my body, after years of trial and error, years of wear and tear, and ALS could benefit the world in some way, science in some fashion, is enough for me. I know where I’m going when I’m gone, and I don’t need this bag of bones when I get there so anyone that can learn or heal from it is welcome to it.

Here is the link to the Texas Advance Directive

Each state has their own form, so make sure you have the one that correlates to your state. You don’t have to get it notarized, but you can, and there’s places to detail your wishes. I think it’s funny that you can name your decision maker or “Agent” without having to obtain their signature or social security number, like “Surprise! You’re the sucker who gets to pull the plug, sorry I didn’t get your permission”.  You can also read about hospice care, grief, and other info on that site.

“Dying was a part of living. You had to keep tuning in to that if you expected to be a whole person. And if the fact of your own death was hard to understand, at least it wasn’t impossible to accept.” Stephen King, The Shining

When did we get old enough to think about stuff like this?


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