On Death & Dying, Luckily

Okay maybe “luckily” is too strong a word, but I didn’t want you all to be scared off by the headline. I have an incurable disease, and I Have Thoughts to share. Well, many thoughts but just two today, a rant and a reassurance.

Starting with the rant, so I can end on a high. Not literally high, as I’m not yet taking anything to help with pain/insomnia/appetite, but a tonal high. Reader, be warned, I am having a stream of consciousness kind of day and apt to wander off in all directions, and am not in a self-editing mood.

So, the rant. Someone quite close to me said, after I commented about dying “Well Liz we’re all dying”, in a rather short, impatient tone. Now, this isn’t someone who also has a serious illness, no, this was said in the way that people spout out “We are all dying” as though it was some big philosophical ideology when instead it’s just a trite, overused phrase that makes the speaker appear less like a deep thinker and more like an insensitive, disconnected ass.

Sure, yes, we’re all technically dying I suppose (but then if you think that way, can you ever live?) But more to my situation, here’s what I wish I had been able to articulate at the time:

Yes, sure, we’re all dying. Someday. But most of us don’t know how, or when, or why. Most of us are free to plan, and hope, and dream for a future. Most of us don’t have our thoughts for the future filled with worries about money, equipment, medication, deterioration, progression, end-of-life scenarios. Most of us believe we have a future, until we don’t. Most of us do not have to try and reach an emotional balance that allows us to live while we’re, you know, actually DYING.
So think about that difference, and try and keep your pie hole shut until you can practice a little sensitivity and empathy.

Rant over! Happy thoughts!

An ALS death, according to the support group coordinator here, is a peaceful one. This was one of the first things she told me, literally before she came through the door, and has remained with me.

Now, I’m not talking about the road that takes us to that point, but the point of death itself. Most ALS patients who let things progress without intervention (except a feeding tube, where necessary) will die of suffocation; as the muscles falter, the respiratory system is affected and fails. But it’s not a lack of oxygen that kills, a situation where the patient gasps for air, panicking, unable to breath; it’s the inability to exhale carbon dioxide efficiently. So, we begin to sleep more and more until we do not wake up. Sounds good to me, I love to sleep.

That’s a rather simplistic version, but it does help demonstrate why it’s considered “peaceful”. (I’m glad that set your minds at ease, Boo & Jenny, I never thought to explain that to other folks xo)

So in theory, I can get all gooned up on pain meds and go to sleep, and that to me sounds a whole lot better than say, getting mangled in a car crash, or drowning, or being trampled by a herd of angry water buffalo (hey, it could happen, I just learned this week that there actually WAS a herd of water buffalo on Vancouver Island at one time. I don’t know if they were angry but I don’t know their lives. Maybe they didn’t like being up Island and having to come over the Malahat to go shopping?)*

I do know one thing about being diagnosed terminal, one glorious, life-affirming, amazing, wonderful, incredible thing: I will not have family and friends gathered around my coffin saying great things about me. Because they do that now. The outpouring of love and support and reflections and kindnesses that have been heaped upon us is…is…I think I used up all the superlatives. I have the benefit of hearing about how I’ve touched people, and what they really think of me, while I’m still here to be warmed, humbled, moved, and ever-grateful.

Everyone should be so lucky.
xo

*water buffalo!

More VI water buffalo!