Autoimmune Adulting

I’m an adult I suppose, but as someone without kids, I don’t have to act like one when I don’t want to. There is no chore I actually like, so I put them off until I feel like doing them. Laundry usually waits until I run out of underwear.

One adult task I’ve been putting off for a couple of decades is setting down an advance directive (also called a living will). This makes me a hypocrite.

I had an advance directive once. When I was in college, I was taking a drug for peripheral neuropathy, amitriptyline, that had some bad side effects, including lowering my blood sugar. Of course, I didn’t know it at the time, until it resulted in some interesting incidents.

One of the incidents (actually a set) involved me running away from my mom, who had glucagon (an antidote for low blood sugar), around and around the first floor of our house. Finally, 20 minutes in, I literally got tired of it and plopped down in the middle of the den, where she jammed the needle into my thigh. She said the aftermath was the nicest I had ever been since I had become a teenager.

The next day, before we had a chance to renew the glucagon prescription, it happened again. My parents bundled me into the car and took me to a 24-hour clinic. Ignorant of my feelings on having my blood drawn (I was a screamer until I was 17), the nurse who ushered us to a treatment room was slapping the tourniquet against her hand. I turned to her and said, “Get away from me with that thing.” And boom. Because I was not a minor anymore, they couldn’t treat me.

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When I was once again compos mentis, my mom said never again, and the next day a friend helped us put together an advance directive and a medical power of attorney. However, since those kinds of documents are governed by the states, a 25-year-old living will that is registered in Indiana may not be recognized by Maryland. In my situation, it’s kind of ridiculous not to have one.

That being said, it’s not easy to write one, even with the standardized forms available in many medical facilities, like hospitals. You have to think about scary things – about things I personally have no desire to allow into my head. To complicate matters and for my own peace of mind, not only do I need to customize my living will according to some specific situations, I also need to consider who will be responsible for making my medical decisions if I can’t.

My next of kin is my dad, but he is old enough that, at this stage of my life, appointing him as my medical power of attorney doesn’t make sense. My brother, who would make sense, is limited by his religious beliefs, and would not be able to adhere to some of my wishes. I knew that this was a possibility, and I would never ask him to do something so significant that would compromise his and/or my closely held beliefs. This led to a very brief and difficult conversation with my friend Squirrel, who is a little bit younger and a lotta bit healthier. I hated to ask, and she hated to be put in that situation, but she said that if someone other than family had to do it, she wanted it to be her. Difficult as this was, it was much better than having to decide under pressure from a hospital bed.

In a way, the other half – the advance directive – is even harder. I have to decide what I want if there is no hope. After hundreds of little deliberations in my head since I can only take a little at a time, this is what I decided so far:

1. if I am being kept alive by artificial means, wait at least three but no more than 10 days to see if anything positive develops;

2. get a second opinion from someone who has been researched. I trust my medical network. They should know who else to talk to, and they would agree with getting a second opinion even if they are the treating physician; and

3. After the first two criteria have been met, if the situation is deemed hopeless, the plug must be pulled.

I’ve been in a coma before. I know the odds. If what makes me me is gone, there is no point in allowing my body to linger. It’s time to let go.

I haven’t quite gotten to the specific situations yet, but I will. I want to be in control of what happens as much as I can. Plus, it will ease some of the burden on Squirrel if most of the decisions have already been made.

I hate doing this, but my physical condition, especially in the era of COVID-19, dictates that it has to be done. I put it off, and even though I still don’t feel like doing it, it would not be in my best interest to keep procrastinating.

I guess I’ll be an adult on this one. If I have to.