R.I.P. Ron

I know I’m late, but I just found out that one of my favourite bloggers has died. Ron hadn’t been at all well for a long time, and he was badly let down by those health professionals who were supposed to help him. Still, he blogged relentlessly, everything from disability rights and politics, to wonderful recipes, and so much more besides. He had a brilliant mind, and such a turn of phrase, that every post was a brilliant read.

Rest in peace Ron. May you finally be in a place of no pain, and of peace. You are missed.

https://ronsrants.wordpress.com/

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Remembering LeKZ

For those who haven’t read the backlog, our best friend LeKZ died a few weeks ago, after a long and distressing illness.

For all the antagonism between some of us and them, those of us who knew them and loved them find ourselves missing them more each day. Too many times does one of us think “must tell LeKZ about that”, and then get that sinking feeling when we realise we won’t be having that conversation, ever. It’s not getting easier, but harder. We’re finding ourselves having conversations with them in our head, and we knew them so well that we can easily respond as they would. It almost feels like they’re on the verge of being introjected, but we won’t let that happen. That would be too much, too painful, too wrong for us.

But it’s so hard to let go. Even harder when you know that we’re the executor of the will, and have a room full of their belongings in our house. Constant reminders. It’s heartbreaking to go through her things, stuff that meant something to her, and have to decide what to keep and what to give to charity. The sad remnants of someone’s life, sat in boxes and bags, all there is to show that they were here. Apart from memories, of course. Lots of memories.

The only person/s who knew them, as they were, all of them as individuals, was us. Their names, their personalities, their quirks, loves and hates, habits, voices, nobody knew except us. So it’s down to us to remember them all. We didn’t just lose a friend, we lost so many friends. It kind of feels like a natural disaster wiped out a couple of hundred, and we knew them all.

“There’s just some things that time cannot erase” – Evanescence

Impending loss, and how to fail at coping

Fair warning. There’s some depressing shit in this post.

First off, we can’t go through writing some of this stuff again, so we’re copying the post we had to put up on Fb to let Lex’s friends know what was going on. Real names have been changed to protect privacy.

Hello to all of you who are Lex’s friends. I’m sorry it’s been so long, but some things have happened that have been very difficult to cope with, and updating has been far from my mind.

At the time that Lex made her last posts here, she was suffering from a form of psychosis. It’s not 100% clear what the cause was. It caused her to stop taking all of her medication, including her psych meds, and her kidney medication. The upshot of this resulted in her spending some time in the ICU on a ventilator and having dialysis, as her kidneys were not functioning and the weight of the retained fluids were pressing on her chest.

Unfortunately, the blood poisoning caused by her kidneys not functioning worsened the psychosis, causing her to believe that me and her mother were trying to harm her, and she refused to allow me to visit or call her. It’s taken months of dialysis to reverse the blood poisoning and psychosis, but it has, and she is now psychosis-free, thank the goddess. Unfortunately, the time spent without her kidney medication has caused her kidneys to fail, and she now needs dialysis three times a week.

Lex is now living in a care home, and is having dialysis three times a week. Sadly, the dialysis leaves her feeling quite ill, even though it is keeping her alive. This has been such a struggle for her, and she is very worn out. As she cannot accept a transplant due to personal reasons, she knows that this struggle has no discernible ending.

I find the next parts to be incredibly difficult to write, so please forgive me if I struggle to find the words.

Lex has decided that she cannot go on like this, and has made the decision to stop the dialysis, and let nature take it’s course. She has thought long and hard about this, and has talked with me and her mother about it. As much as it saddens us, and we wish it was otherwise, it is ultimately Lex’s life, and it is hers to live, or to leave. We will support her in every way we can, and stay with her to the end. Once she stops the dialysis, she has less than a month.

Our hearts are broken. I talk to Lex’s mother, every week, and we are supporting each other so that we can be there for Lex without breaking down. It is so very hard. 

Lex is currently putting her legal affairs in order, and is giving me Power of Attorney, so that I can carry out her final wishes, both legal and medical, in the way that she wants. I hope you will support me, as I do what I must.

Thank you all for being her friends. I know she treasures each and every one of you. Please, don’t forget her. She is a very special person, and she should be remembered with love and affection.

I’ll do my best to let you know how things are going, so please check back here from time to time.

With a heavy heart, and many tears shed

Nick

So. Our friend is going to die. Soon. That’s incomprehensible to us. I mean, they’re only 52, we should have years of time yet, right. But, we don’t. That future we all thought we had… wiped out. Gone. How can that be?

13 years of close friendship, more than friendship for some, comes to this. It’s beyond devastating. We’re beyond devastated. Except we’re mostly numb. It’s too big, too much, to feel. We can’t go there. We can feel the cracks, see the fractures, know that we’re slowly, inexorably, shattering, shard by shard. The worst is yet to come.

Lex is also Multiple. Some of us have long-standing relationships with some of them. There are families being torn apart, kids losing parents, partners losing partners. Never to hear their voices again. Numb.

They want us to introject them into us, but we don’t think we can. It’s not the same. They speak with a voice that isn’t ours, think with a brain that isn’t ours, they are not us. Introjected, they would be a shadow of themselves, and that would be like being haunted by the loss of who they really are, never-ending reminders of the pain. Can’t face that. Numb.

This has been an ongoing struggle for over a year now, fighting to get them to accept help, to accept that something was wrong, to make the doctors and hospitals see how serious the situation was. It took them ending up in ICU for the doctors and psych docs to see how badly they needed help, and to finally start taking us seriously. By that time, it was too late. Too damn late. FUCK. We were exhausted a year ago. Now, we’re just flat-out finished off. Our own health has suffered, badly. The sheer emotional stress has physically crippled us. We have nothing left to give.

Yet we have to keep giving. Lex need emotional support. Lex’s mother is 89 and lives alone in the US, and needs us too. We have a Partner and kids who need us. We’re running on empty, we have no reserves left, where is all this strength supposed to come from? We don’t know, but we have no choice but to keep going. We’re very afraid of the price we’re going to pay for all of this, mentally, emotionally, and physically.

We really miss being here, with you, our friends. We miss reading your blogs, hearing your words, sharing life with you all. We want so badly to be able to be there for you, to support you, to be with you. In our hearts, we always will be. For now, all we can do is hope that’s enough.

We love you, our friends. 

Ethan

Dunno where this is going, but…

This might make sense, there’s even a remote chance there’ll be pearls of wisdom in here, but don’t hold your breath. It’s more likely to be stream-of-consciousness crap.

It’s been a while so I doubt there’s anyone left to read this, but that’s ok. We haven’t been here to comment or support anyone, so that’s fair.

Our friend has been in hospital since January. In and out, bouncing between the medical hospital and the psych hospital. They’ve had a total breakdown. They spent a week on a respirator in ICU coz they won’t take their meds coz they think they’re poison. They’re refusing to let us visit, or even talk on the phone. They’re refusing to talk to their mum, and she’s 88 and lives in the US and is worried sick. It hurts to be rejected like this. Some of us have relationships with some of them, but now we don’t know if that’s true anymore. Left hanging. It hurts bad. Saddest of all is the cold, dead spot that’s growing where the love used to be. We can only take so much, and they’ve been pretty terrible to us for years. We feel like we’re losing them, already lost them, and we’re losing the will to care. That should break our heart, but somehow it’s just a hollow ache of no-more.

Life is hell sometimes.

Our shrink changed our psych meds. We’ve come off Zyprexa and changed to Seroquel. The plus side is we’ve lost 21lbs. The downside is that it doesn’t seem to keep us emotionally level like the Z did. We’re having highs and lows again, and we’re struggling to cope. Badly.  But after 4 years of being level, the lows are horrific. We’re a turtle in a shell, able to peek out at the world, but incapable of interacting with it. It’s too much. It feels like crushing pressure, and we hate that. We like interacting with our friends. We miss you, all of you.

Especially Jaime, a faint voice whispers. Soft, broken sobbing is heard, then fades away.

We start psychotherapy soon, and that terrifies us. Telling a stranger how we feel, what we think… Who We Are. That we’re here, we’re real, we exist. No no no, that’s all wrong, oh no. Back in the shell, denial denial.

We’re in constant pain now. We don’t see the colo-rectal surgeon till October. October. In 24/7 pain, can’t sit, even lying down hurts. Let’s not talk about the fear of needing the bathroom. Burning, stabbing pain that never ends. And months to wait for surgery. Don’t think we can cope for that long. Pain makes a person crazy out of their minds. We’re crying a lot.

Everything seems like it’s spiraling out of control, like a plane falling from the sky, trailing plumes of smoke and fire in it’s wake. Will we eject before it hits the ground, or will we be paste on the runway. We can’t find the eject button. Oh gods, where is it. The g-force is crushing our chest, it’s so hard to breathe. Don’t wanna write this, don’t wanna say. Wear the mask and pretend we’re good, like always. Don’t be a burden. Ever.

안녕  annyeong

Samhainn and Hallowe’en

We had a good Samhainn this year. We lit our candle, and thought of those who have gone before, and told them we loved them and wished them peace and love and happiness. It was very uplifting, and calm, and full of love.

Inside, we had huge roaring bonfires, and everyone walked between them to cleanse themselves. The kids Inside went trick or treating, and got tons of sweets and chocolate! There were turnip lanterns, coz we’re traditional that way, and warm cakes, and treacle tarts, and cinder toffee, and the adults drank honey mead and warmed cider. We put out offerings of food and drink in thanks for the harvest, and for the spirits of those gone before. The celebrations, if that’s the right word, went on through the 1st, and the whole day was warm and comforting and filled with peace and a sense of community. We ended the day with a feast of epic proportions, with tables and benches in the streets, and everyone contributed something, and there was much feasting and raising of glasses and merriment!

Outside, on the 31st, we watched Boo, Halloween 4 and Halloween 5! Nothing like a good horror movie marathon on Hallowe’en!

We manage to celebrate both holidays, without blurring the meanings of either one. Samhainn is for remembrance and reflection, of giving thanks, of meditating on the year gone by, and of those who are no longer with us. A time for community and closeness. Hallowe’en is for fun and sweets and the laughter of kids, and of movie marathons and popcorn. Both have their place in today’s world.

-Bethanie

interacting is so hard sometimes

some days, it’s so hard to interact with the outside world.

we can read, and we do, but when we try to interact, to post, to respond, it’s like having a handful of sand.

every little grain of sand is a word, a thought, a feeling, but we can’t hold on to any of them, they just slip through our fingers.

life goes on inside, but the world outside of the body seems ephemeral, out of reach.

we sit and stare at the walls, at the computer screen, nobody really fronting, just drifting.

we write blog posts, long intense emails, but somewhere between the brain and the keyboard, they get lost.

we are not disconnected from each other, but we are from the outside world.

Life is hard. Dissociation is easy.

days like this don’t scare us. it’s peaceful. just drifting.

It cannot last though. We must reconnect. We must find our anchors again.

We always do.

But never think that we don’t care. We care a lot. It’s just sometimes we have a hard time saying so.

forgive us? we are sorry.

Bad times

Our friend, and for many of us, more, is in hospital. They’re a multiple system that some of us have relationships with some of them. It’s complicated!

They had a wound in their foot which was stitched up. The very next day they ripped out the stitches, and left the wound open for a week, so of course it got infected. Cue the ambulance and a stay in hospital. They started acting really odd and paranoid and kinda delusional while they were there, and ended up signing out AMA. Did I mention that we were back and forward from the hozzie coz the nurses kept calling us to go in and calm them down?

2 days later, we’re on the phone, and realise they’re not making any sense. Totally confused, paranoid, thinking people have guns and are coming for them. So again, we call them an ambulance and stay on the phone for an hour waiting for it to come. They had to wait for police backup coz our friend has a history of being abusive and aggressive. They get rushed in, and the docs think the infection has spread and is making them act this way. We think different.

Turns out we were right. They did scans and lumbar punctures and tests, and the infection hadn’t spread. Instead, it’s a psychotic break, and they need psych care. We go in to visit, and they don’t recognise us much, and are spewing hate and vitriol at us, hitting all of our weak points and triggers. So they recognised us enough, I reckon.

They’re still there, waiting for a psych bed, as far as we know. The poor nurses. Our friend is raging delusional, thinks the nurses are trying to kill them, and are wandering through the ward, bursting into the other patient’s rooms and screaming at them. They now have a dedicated nurse with them all the time.

We’re angry coz we’ve been begging them to get psych care for 6 years, and they’ve always blown us off and attacked us for even daring to think that. They always have to be right, you see. It hurts to know that we were right, and to be hurt because we dared to say something. We’ve been hurt so many times over the years by them, but we stayed coz we care. So yeah, we’re angry that all that hurt could have been avoided, if only they didn’t have the burning need to always be right about everything.

And we’re worried about them, coz we care. We don’t know if they’ll be the same people when this is under control. Will those of us with partners there still have them? Or will we be left, alone. We don’t know. We can only hope.

It’s a bad situation all round, it really is.

-Blaine

Friends

It’s hard to make them, specially when you’re an inside bloke in a female body. People see the body, and that’s it. Sure, we have friends, but they’re either Nick’s or all of ours collectively, coz they don’t know about us all being here! That’s cool and all, but sometimes we feel like it’d be nice to have friends who know we exist, and want to be friends with us individually. That’s even harder, coz our natural instinct is to stay hidden.

But now, I have a friend! And what’s more, he’s an inside bloke in a female body too, so he totally gets it! Do you know how fucking rare that is? To find someone like me who wants to be friends? Friends with me. You have no idea how cool this is! It’s early days yet, but I get a buzz every time he emails me! I HAVE A FRIEND!!! And he’s super awesome lol

Ok, enough with the sappy shit. I just really felt the need to get that out there! I’ll go do manly things for a while now lol

Blaine