I listened to a message you had left that sunny September day in 2023, letting me know you were in the hospital – ‘doing okay,’ although you said you were feeling very weak.
It’s hard to listen to now because you’re gone. It was just three months from your diagnosis to your death. As we talked during those months, you said that it had been a couple of years that things were starting to not feel right. You said you were tired all the time, and you couldn’t get to your doctor, and when you finally did, he minimized what was happening. Unfortunately, you weren’t someone who would demand being adequately treated.
By the time they had ordered tests when you had called me from the hospital, it was already basically too late (although no one could know that in the moment).
But I think you did know. I think that’s why you had me take you home that night. I’m sure you were terrified, and you were trying to run from it. I understand it now in a way that I didn’t before.
I’m so sorry that we never got back to the kind of friendship we had in our twenties. I don’t really know what happened, but maybe it was just time moving on and life shaping us.
I hope you know that I always loved you, and always wished that we could be friends again. I know that you loved me, but I didn’t feel like you liked me very much, and I felt hurt and defensive.
If there’s another place where I’ll see you again, I hope that we’re in our best selves with each other. But I’ll be glad to see you no matter what.
I’m also glad I saved your message – I’ll take the bitter to have the sweet.
It’s this inbetween-land. Everything looks strange and inaccessible, but it’s also all familiar and available. I think I’m not liking this aspect of human-being.
Anger has saved me lately. It’s raw and vivid, and takes me out of any other feelings. Its also cold and callous. I see pain around me, even within me, and I’m not moved – except sometimes I am.
I will come back to balance & center again – but I’ve been trying to drink it away, and all I get is 15 or 20 minutes of relief, but hours or a day of feeling sick.
It’s not a good trade off. I feel better when I don’t drink, plus I can’t afford it anyway. I can’t sustain anger either. I have to let the grief be there. I don’t want to talk, I have to walk about and let all of it be there.
So I’ll leave the booze to those it won’t try to kill, and I’ll keep putting one foot in front of the other.
My sister got very sick, fairly quickly – even if it had been signalling its arrival for several years. It was hard to see what was happening until the worst happened.
Systemic scleroderma is a lot like cancer in remaining a general malaise for a long time before it erupts. Some get a milder version they can live with, but my sister got the worst version. It was relentless.
Her death was a relief for her because there was no out. She wasn’t traumatized at the end, her breathing got fast for a few minutes and then just stopped. We did all we could & in the hours before her passing we kept her comfortable, and kept telling her we loved her.
Don’t make any major decisions for a year wiser people say, but all I want to do is run. I want to move to another country or another planet. I want to not be at all anymore, and not because I’m grieving over my sister’s relatively early exit, but because there will be more.
It’s never going to end – it was just much less of it earlier in my life.
Maybe whatever comes next will be amazing and I’ll be so happy once I’m there, but as I am still earthbound, I have to deal with being human. If I hurt myself through carelessness, I’ll just have those consequences on top of getting old or sick.
If I’m going to be here, it’s important to me to be in the best shape I can to live the rest of my time well, and I will deal with my death when it comes.
It’s ok if you go, but it’s not ok. Or maybe I don’t know how I feel.
It’s so complicated. This life. Our trauma. You were so mean to me growing up and then we became friendly and we had so much drug-fueled fun together.
You were fierce and brash – so full of your youth and life.
You laughed a lot then, and danced and sang and played.
Life slowly chipped away at you and you reverted to being mean to me again.
I didn’t understand what happened. I remained who I always was. I’d glimpse your old self now and then, and my hope for friendship’s return brightened, only to be dashed with your harsh words. Your inner bully grew, even though I sensed the conflict within you, the desire to be free again.
‘Nothing is wrong with me,’ you would declare. ‘I’m not crazy,’ you spat out from your deeply wounded, deeply guarded self.
No, you’re not crazy. You’re wounded in a way it takes professional help to navigate, but that’s only for weak people like me, right?
I got to be the scapegoated one. You got to see me as more fucked up than you because I couldn’t contain my trauma. The irony is, neither could you – not really.
We were brutalized. We suffered PTSS before it was given a name.
But you pulled into yourself and declared war on the world – and pushed me out.
I never left. I still loved you & waited for the day you might remember the joy we had through the pain that was easier to ignore in our exuberant youth.
I hate seeing you stripped of your vitality and strength. You’re still trying to bully your way through this illness that does not compromise or get worn down. It just keeps punching.
Getting well means accepting that you’re not in charge, and it’s calling the shots. Your chance is in letting go and finding that resilient affirmation to live.
You’re scared and so am I – and I’m still on your side through it all.
It’s ok to go, but I’ll be sad we never got back to the goodness we once had. I’m accepting that it belonged to back then, not now.
I lost you long ago, but keep holding out hope in the face of all evidence to the contrary.
I’m sorry. I forgive you, please forgive me. I love you.
Time has been a strange concept for me. Sometimes I feel like my life has been one long day, and other times it feels like I’ve lived several lives since I was born.
I have clung to people in my past that didn’t cling back, even though we seemed so close at the time. I am lucky to still have a few people in my life that have been my friends through a lot if not most of the journey so far.
I try practicing the Buddhist idea of non-attachment, and try as I might, I still have attachments. I have put time, love and energy into people who seemed to feel the same, but have detached, or our connection didn’t mean to them what it meant to me.
We change. Our desires or our focus shifts and we either fall into, or choose, new groups of friends or acquaintances that give us more of what we’re looking for, maybe?
It’s about acceptance too. I keep hearing the lyric: “If you can’t be with the one you love, honey, love the one you’re with,” from Love The One You’re Withby Stephen Stills.
I naively assumed that the people that were with me then experienced our connection the same way – that it mattered as much to them as it did to me.
It’s not bad or good, it just is. The challenge is to accept that. It’s not like I hadn’t been living my life anyway, but I have to incorporate it differently in my mind, and not interpret it like there is something wrong with me. There is nothing wrong with me – or at least nothing that the right pharmaceutical can’t dampen. (Kidding – sort of). I’m still waiting to get into a therapeutic psychedelics treatment.
Honestly, losing my mother, one of my best friends, and two other very good friends in the space of three years has been really hard. I miss my mom so much lately. It’s more the idea of her, I think – like my longing for someone to make my pain less raw. It’s more archetypal than actual because my mother wouldn’t have won any parenting awards. I think I did better, but guaranteed I still fucked up my kid no matter how hard I tried not to.
This has felt so convoluted, but it’s not, it’s grief. Grief is weird and distorting. It feels never ending and frightening to me – like if I feel it deeply I will dive into the darkness and never resurface – but that’s just not true.
Amnesia seems like it would be an ideal solution, but that would just cause other problems. Balance will return, but it will take a lot longer if I keep stuffing this grief under every internal couch cushion I can find, or shoving it way into my psyche’s back closet.
There’s a pile of papers from several years that have been on my to-do list. I’m an information hoarder. I know it’s illogical – especially today when I can ask the internet pretty much anything and get back more good (and terrible) answers than I could ever want.
I learned that information represents safety. Knowledge is power, right? Only I filed that information away in filing cabinets and boxes. I would look at some of it once in a while, and remember why I kept that information, but most of it pertained to circumstances that never happened – like how to survive in the wilderness.
If I find myself in the wilderness, but haven’t read that damn article stored in my filing cabinet, it’s no better than not having it. I learned from various sources to stay in one place until someone finds me. Well that depends on if I’m in an area of regular traffic.
I know I can eat pine tree bark and needles, and to try to sleep off of the ground, and to try to make a lean-to, but I cannot protect myself in every scenario.
Not once have I ever been lost in the wilderness. I only go hiking with someone, and then only on known trails. I am not an adventurer.
But what if a plane crashes in the wilderness and I survive?
I guess I’d have to deal with that then. Honestly, I hope I don’t survive if that happens. I’ve never been good in a crisis, and I have enough PTSD as it is.
When my son was six-months-old, I was camping near the ocean with three friends and their children. Their girls were eight and nine. I asked them to watch my son, who was clipped into his child seat on the middle of the picnic table, while I went to the bathroom. They said yes, and as I walked away, I hear a loud noise and a thud.
I did that seemingly slow-motion turn around to see that the girls must have each thought the other would stay by the table and they were walking away in opposite directions while my son must have rocked forward and tumbled from the table.
A scream came out of my mouth that I did not know I was capable of making, and I shit you not, at least three mothers from other campsites came running into our site while I stood there frozen in horror, believing my son dead.
They scooped him up, and what I thought was blood turned out to be dirt and nettles. They cleaned him off as I regained the ability to function.
It’s rattling me again as I write this.
I was so relieved, and then ashamed that I froze. I am also forever grateful to those women who jumped into action.
I’m recycling reams of information that is good to know, but useless if it’s not in your head at the moment you need it – and you’re able to act on it.
I suppose I shouldn’t feel too bad because earlier that year, my son was choking, and I pulled him out of his high chair, tipped him upside down and thumped his back – and out came the food.
I don’t know why I froze at the campsite, but I’m glad I was never tested again in a seeming crisis.
She laughed and smiled, and went home planning to die.
She drank or drugged to feel different, and for several beautiful minutes she felt whole and worthy, but it was so brief, and it didn’t fill the gaping hole of worthlessness.
Justifying her existence became her job. Hiding became her daily pursuit. Hiding in plain sight.
She couldn’t afford to let you know her even though she was desperate to be known, to be loved, to be accepted – to matter.
Every failure confirmed her lack of value, and she told herself that everyone knew she was shit – it was a pheromone radiating off of her.
Shame was her cloak – its vile fabric wrapping its folds so tightly around her.
She didn’t even know she had fallen back into the pit. She had reopened all the old escape hatches, but they didn’t hide her anymore.
Until she remembered, and really understood that she had to change her self-beliefs – to love her unlovable self, and learn to act differently, nothing could change.
Living was becoming unendurable, but she was still too afraid to kill herself. In a fog of self-loathing, she was gifted the memory of once having worked hard to like herself – even reaching a sense of love and self-worth.
“No one provides worth or value,” came the small voice. “It is always self-derived. It was never fostered as a child – that shame belonged to others who failed their duties. But it’s still possible,” said the voice.
“Let the flicker become a brilliant blaze, and know that all fires go out if they are not fed. And a fire will burn whatever fuel its given – so feed it worthy fuel.”
Addendum: It’s also okay to borrow fuel from others if all you have is shit to burn.
I’ve gotten scared a couple of times while driving in the last month or so. My hands are on the wheel, eyes on the road, but twice now I have caught myself having to remember to be in the world?, Something like that. I haven’t figured that out yet, which is what’s terrifying.
Have the leaded gas fumes from my father’s Lincoln Continental that I breathed in deeply several times after he had parked in the driveway finally melted my brain? He must have caught me doing that because I only remember getting to stand there breathing in the lead fumes a few times. It must have been better than the smell of bread or cake or cookies baking, because none of those aromas made me want to stick my nose as close to the oven as I could to breathe it in as fully as I could.
But worse than that, could I be getting some form of dementia?
It’s hard to write about this because it’s embarrassing and scary, but it’s real, and maybe someone has an answer, or has experienced something similar.
In both incidents the eerie displacement of time, or space, or space/time, or whatever was happening to me, left me hyper-vigilant, and desperate to seem normal, to feel normal.
I got to my destinations fine, and I’m now realizing that the drives home were unremarkable.
Maybe my senses aren’t as acute as they were a decade ago (or even last year)?
Maybe this is what getting old is.
Bite your tongue, I hear my rebel yell. Fuck off, and then come back and fuck off again. Old. Pssshh!
That’s like saying I’m defective, used up, yesterday’s news – and that’s stupid.
But I can’t stop what happens to my definitely time-based body, even if my, what? – id, ego, and super-ego? – are up in arms at the seeming injustice of it all.
I just have to accept what is, not approve of it.
I also have to figure out if there is something wonky going on in my brain.
Maybe it’s something simple, something fixable.
The fear underneath everything else is whether or not I matter – whether I have relevance.
Well, that is completely self-determined, isn’t it?
No one else defines me unless I let them, and I don’t have to let my worst thoughts about myself decide who I am either.
Full human – still here, still crushing it … 8 times out of 10 – so far.
“November would be unbearable were it not for knowledge of spring.”
I wish I could remember the author of that quote. An internet search turned up nothing, and I am probably misremembering it, but that is the gist of it at any rate.
I heard it back in my college days, studying literature, and the edge of my brain is saying it was a woman writer in the 19th or early-to-mid 20th century.
I’m thinking of this quote in terms of my mother, beyond this physical world now. I suppose spring represents the mystical realm, where I believe I will see those who mattered to me again. At least the thought sustains me in these darkening days.
The large maple tree in our yard, so recently flush with green leaves – with life – stands bare again as the year cycles. The birth and death of its foliage every year reminds me that I will cycle too, but unlike those leaves, I will not regenerate in the spring – at least not here.
My mother told me once that she heard in her mind: “we’re waiting,” when she stood outside on a frigid winter day, wondering what happens to the leafless trees through the long winter months.
November maple tree 2021
Are you waiting now, Mom?
I glance at that tree through my window, and think about my mother having cycled into the underworld. She is literally under the ground now – no word on what happened to her spirit or soul.
Wouldn’t it be nice if there were spirit journalists – envoys from wherever they are now – sending their observations on the work-a-day spirit world back into this physical realm where we could pick up their papers and journals, or read their blogs?
I’d particularly like to read Mark Twain’s (Samuel Clemens’) observations. I’m sure my mother would too.
She had a good sense of humor, and appreciated irony and satire.
I took a trip to my mother’s old trailer, and was depressed about the state of it.
All the wood and the walls and the ceiling and floor are rotting away. All I could think was “as above, so below.” I try not to think about my mother decomposing in her grave – but she always spoke almost reverently about becoming “worm food.”
A grave robber broke into Mozart’s tomb and was shocked to see him sitting there, furiously erasing what looked like one of his symphonies.
“What are you doing?” blurted out the startled robber.
“I’m decomposing!” replied Mozart. (one of my mother’s favorite silly jokes)
Besides missing laughing, joking, and talking with her, it strikes me that I probably never knew my mother as she saw herself, and I didn’t particularly like aspects of my mother that can bring up terribleness even now.
I see my mother through my lens of need, often forgetting that her neglect and dysfunction helped cause much of my disturbed emotional being.
But, I still love her for what she was able to do – for her trying to do better. I remember how she was there for me when my son was born, and throughout his growing up – even though I curse the hell that was wired into my brain, which hurt my ability be the mother I had wanted to be. Even so, I did far better with my son than was done for me.
People like to quibble on the nature vs nurture question, but time and again we see those who mostly had what they needed as children doing far better than those who didn’t. All you need is one appropriate, concerned and loving caregiver to get you through awful circumstances, and perhaps even thrive, but not everyone gets that. Humans are resilient, and I know that we continue on regardless – I and my siblings are proof of that – but we still paid, and in some ways, continue to pay for what we endured.
We are all on a heroes journey. We all suffer, face challenges large and small, and we all have the potential for victory. But those who don’t slay their dragons are not less worthy, they’re just less celebrated, or honored for having done their best. They “failed” to vanquish the darkness, but they still tried.
Sometimes there’s more to love in a loser than in a winner. We can all relate to loss.
I once heard how a goldfish swimming around its bowl is perpetually surprised to find someone looking at it on each go around. I feel like that’s me.
Once again, I’m trying to hold myself away from the darkness.
Every year – every year!, I think this year will be different. This is where the therapists, psychologists, psychotherapists, etc., have it wrong. They just do. This just has to be endured. I don’t encourage this, or ask for this, or want this. I do my best to change the circumstances, the feelings, my attitude, my situation, my – being.
It’s like something descends upon me, or pulls me, or – I don’t know, but I have spent the last 30 years of my life trying to fend this off and I have yet to change it.
Maybe I have allowed it without being aware? I reject that. This is not my doing. I work toward a stable, content, capable life – all the time. Maybe something is attached to me that has the most power this time of year, or whenever I’m most vulnerable?
Trying to think my way out of this does not work. I know that something lets go – eventually – but I get closer to stepping off the world too.
All I can do now is be as kind as I can. Don’t judge, don’t demean or belittle myself – and don’t accept defeat.
So, the goodness I thought would reign didn’t manifest, and the people chose darkness.
They chose hate, fear, misogyny, and it’s the first time a known sexual predator was elected to the highest office in America.
We are lower than we’ve been since John F Kennedy, Bobby Kennedy, and Martin Luther King, Jr’s assassinations.
Healthcare – such as it is – will be repealed, and people won’t be covered for pre-existing conditions. Women’s rights – even the right to vote – risk decimation.
Supreme Court justices who are anything but just will be installed, and America will not get over this ruination.
President Obama barely got us out of the hell President George W. Bush got us all into, but at least we were making progress.
The bully elect will knock down and crush the building blocks so painstakingly erected over these last 8 years of a do-nothing Congress, that America also saw fit to continue.
I am bereft, bewildered, and sad for my fellow Americans, especially us women, and for the children who will wonder why we did this to them.
Making A Way 