Story: that time I stopped counting
Math is difficult. I have trouble keeping track of things. How many days it's been since I've spoken with someone, or taken a certain medication or eaten anything, for example. Somewhere in the mess that's been my last year of life, I've lost track of how much I've written and published here as opposed to anywhere else, besides which I don't recall stories by numbers anyway. More organic, I think, to just call things what they are and remember them that way.
The one vice I haven't given up since my health really started becoming unpredictable but generally very bad is smoking. I've cut back quite a bit and I've no idea why other than that I just don't feel like smoking so much lately. I am still not a happy woman when I have run out of cigarettes which is normally not an issue because typically someone can run to the store a mile up the road without much effort. But my van and my partner who drives it are three states away having a second Christmas with one of my children and the neighbor who usually runs to the store for me when I am home alone has his phone cut off so I can't ask him for help either. The neighbor just next door who has taken an interest in us because he is that kind of man at that age where you bring in the bins after trash collection if someone might struggle to do it for themselves is very busy between his work and girlfriend and having a one-sided feud with the neighbors over the fence (he suspects their children threw a garlic bagel into his yard, and as garlic is bad for dogs and these neighbors are noisy and don't keep up their yard, his assumption is attempted dog poisoning instead of my theory that a kid didn't like garlic bagels and chucked the thing over the fence then told their parents they ate it, not knowing about the whole dogs and garlic thing.) and in any case I only ask for his help in actual emergencies, which in any world running out of cigarettes is not.
Of course it's 16°F outside and will only reach a toasty twenty-something at the sun’s peak. I have been trying to find out what those temperatures will do to my power chair, can I still go to Walmart and buy milk or will my fully charged battery drain before I get home? It is hilarious to me that I can have alcohol and controlled prescriptions delivered to my door, but as of yet tobacco delivery is illegal unless one orders cigars. Surely I can make it to the closest gas station and back, but as my top speed is somewhere around 6mph I'll be outside for at least 45 minutes round-trip and this gas station features neither a McDonald's or Starbucks where I could break the trip up and get a hot drink. I do still have all the jackets and scarves I collected while living in Chicago so I know factually that nothing too terrible will happen to me other than I will be very grumpy and somewhat uncomfortable for an hour, but ankle-length wool coats aren't meant for wheelchair users generally. It seems likely that I'll just wind up with a lot of upper body layers and a rig involving entirely too many throw blankets and no real way to secure them around my legs. That wouldn't itself bother me but I have yet to encounter a drive that doesn't have at least an inch jump from the street onto the sidewalk and so you have to angle nearly perfectly if you want to actually enter a parking lot or cross a road but you'd prefer not to get trapped, two wheels spinning madly but uselessly while the machine you're using tries to find a normal grip on the ground. Most of the time when I'm stuck like that, I can reverse and try again, but in weather this cold every driver on the road will be grumpy and impatient and they won't be thinking about the fact that my hands are numb and I am crying from the cold in my eyes, they will be cursing their car heaters for not working more quickly or efficiently.
And to think, just a few months ago I was gleeful at the opportunity to travel this exact route for myself.
I wonder a lot this week how many recovering evangelicals are watching the weather wondering when the gnashing of teeth will begin. We have the fires and earthquakes and tornadoes, we had a pandemic with another around the corner. We have a declining rate of church attendance and global conflicts that serve no real purpose. We even have an irreligious world leader whom people pray to that's determined to save Israel and return to Jerusalem.
I don't believe in what are likely hallucinations from a really bad trip some guy had a few thousand years ago on an island, and certainly don't think that guy spoke on behalf of all of divinity, but you do have to hand it to John - whatever he saw was pretty hellish. It's like that quote about American fascism coming wrapped in a flag and carrying a cross.
I've been asked a lot recently by internet people whom I don't know what dying is like. They ask mostly because they have friends and family who are dying or have died or will do, and they want to know how to behave. I don't think there's a good way to do research on that, because most of the people giving advice about it are not themselves terminal and therefore are at best guessing. At worst people are projecting their own hopes and fears about how they'd want to be treated.
I have not minded the questions as I think at this point my reputation of being willing to discuss most anything is well-earned. I am learning new things about both intentional and accidental cruelty from my loved ones every week, I am not particularly hurt by strangers being a bit churlish or insulting. They're only trying to make sure their loved ones don't learn about cruelty from them at the end.
The most common advice I give is that you only have to say how deeply this will affect you once. Then go back to hanging out with your person, watching your shared TV shows or gossiping about Hollywood relationships or arguing over whether it's ethical to pretend that vegan chicken exists. You thank them for having been there, tell them you'll miss them and then instead of creating a shadowed mausoleum and forcing them to live in it until it's over, you just take more time with your friend as you can.
Also, try not to be a selfish dick about it. Anyone who has been told by doctors to get their affairs in order for the very near future is likely in pain. They are likely on new weird drugs and trying to figure out which of their seven new medications is causing the bloating and which the vomiting. They are rerunning everything they've ever done or said or thought in their head and likely rethinking their belief or non-belief in deity.
They don't need you sitting by their side telling them that it's hard to watch, or that they are making you uncomfortable, or that they're setting a terrible example for their children. They don't need you stepping into their lives and “helping” however you see fit any more than a wheelchair users needs you to grab their chair and start pushing. They have not lost their humanity and in many cases they are still who they were the day before they got diagnosed, only now with horrific new injuries or diseases.
Offer help, if you want to help. But don't be infantilizing about it. Don't insist that you know better than they do what they need, or demand to be included in their grief.
Someone who is terminal is doing their best to make the most of what's left. For many, it will be the first time in their lives they haven't spent most of their time catering to others, compromising their own comfort to make everyone else comfortable. Them not centering your wants and needs in their deaths isn't an insult to you, it's freedom to them. They are taking charge of their remaining time.
Just show up with the good snacks or equivalent and be their friend like you always were.
I hope this week that your pipes don't burst and your house doesn't burn down and for no reason you can tell, you find something quite charming in your path.
your words captivate me every time. i’m always so grateful i stumbled upon that huffpost comment. the years of wisdom you’ve imparted on me are so cherished. 🫶