I am forty-seven years old and I have a brain aneurysm. At 11mm it is considered medium-sized. It has an irregular shape, called a fusiform, and it’s in an awkward position in the artery. Every option, including doing nothing, is risky. My neurologist is the Professor of Neurology at one of the top ten neuroscience centers in the country. He is the one who teaches neurologists. The one patients would want to see for their second, third, or fourth opinions. As of this writing, even he isn’t sure what to do next, but is consulting the neurology team. He mentioned clinical trials I might qualify for. This is not encouraging. I don’t want a clinical trial. I want a treatment that makes this go away. Forever.
After discovering I had fibromuscular dysplasia in a renal artery that was likely causing my high blood pressure, I had surgery. This appears to have helped tremendously and I am grateful for that. But curiously, the FMD is linked to brain aneurysms, so it’s just one big party in here.
Now what? I do all the things I’m supposed to do: take all medications as directed, eat smarter, go for walks, yoga, try to channel the demeanor of a chill slug.
While I’m Waiting-For-Something-To-Happen, I get to think a lot about what it means to have a time bomb in my head. I don’t know when. It could be anytime. It could be years from now. Maybe I’ll live a long time and this bulging artery will just sit there, hanging out. I think a lot about dropping dead in the middle of whatever I’m doing. I hope I’m not driving. I hope my kids aren’t around. I hope I’m not in a public place. But then, where do I want to be? Asleep, right? So imagine what bedtime is like. I-n-s-o-m-n-i-a.
Or maybe it won’t be sudden death, maybe I’ll just be paralyzed or go blind. Or lose the ability to speak or understand anything. That would really suck for all involved. Or maybe I’ll die in a car accident. Or fall on a pencil. Or have an anaphylactic reaction to some shellfish.
I don’t get to choose. But that’s LIFE. Most people don’t choose how they are going to die.
Most people don’t want to talk about such things. Especially my family, who would obviously be the most affected. But I do. I want death to be part of ordinary conversation. I want to be able to talk about it without feeling morbid or awkward. I want to express fear and sadness and I want to laugh about it. I am all about gallows humor. I want it to be like this:
“How are you feeling, Melissa?” “I’m good, no explosions yet!”
“You have a headache? Holy shit, Melissa, that’s not cool.” “I know, right?”
Me: “God, the strobe lights at that concert were mind-blowing!” You: “Very funny, Melissa.”
I want it to be okay to talk about being scared. I want to be able to wonder, out loud, the things I hope to do before I go — not a bucket list (I never understood that concept). I may want to talk about things I really, really regret. The common phrase “have no regrets” is ridiculous to me. Of course I have many regrets. Ok, maybe I don’t want to talk about those.
I want to have that thing that everyone has after a loved one has passed on, that “celebration of life” thing? I would like to have that before I go. I want to remember and talk about all the great things I’ve done (and have people remind me that I have done some great things). Listen to my favorite music. See a thousand photographs of friends, family, and the places I’ve been.
There are many other threatening illnesses. Friends and family rally around, cheer their loved one through treatments and recovery. Many have support groups, colored ribbons to signify awareness, walk-a-thons, marathons, fundraisers, bumper stickers. But not for brain aneurysms. Once an aneurysm bleeds, the chance of death is 30 to 40 percent and the chance of moderate to severe brain damage is 20 to 35 percent, even if the aneurysm is treated.They can kill at any time, even young people. It’s so random. That’s the scary part. So no one wants to talk about it. There’s no “etiquette” for this.
Want to have coffee sometime and talk about death? But it has to be decaf for me, because I gotta keep the blood pressure down.
(*I had a Pipeline Embolization Device implanted in July. Except for easy bruising due to the mega doses of blood thinners I have to take, I’m good for another 47 years and I feel GREAT! But sadly, no roller derby in my future…)