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

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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

Of hibernation and hedgehogs

Good Morrow to you, oh wonderful handful of people who actually read here! I realise that a post from us is probably a huge shock, so sit yourselves down and take a few deep breaths. The weirdness of it will soon pass. I think.

Between the beginnings of the winter depression, the infection of the kidneys, the struggle to find housing, and the psychotic friend, it’s been a bit of a rollercoaster ride, with far too many big drops. There has been much curling up in bed, plenty of sleep disruption, and a probably-not-healthy amount of mindless games playing. The dissociation gets much worse during the winter months, and we have no idea why. It probably means we’re a hedgehog, and have a primal need to hibernate. Or something. Meh.

So. Winter feels unsafe. And yes, this is really strange, because emotionally, we love winter. Wild weather, storms, snow, it’s all good. But physically, we feel unsafe. Edgy. Miserable. The anxiety skyrockets, the panic attacks multiply, and we have an overwhelming urge to be in hospital. Medical hospital, not psych. Like we’re expecting something bad to happen to us physically. Considering the long list of serious medical conditions we live with, this isn’t a totally irrational fear. But why always in the winter? Most of our medical hospitalisations have been in the summer, as we have lousy heat tolerance and heat makes us very ill. Yet something about the nights drawing in, the darker days, it makes everything seem dangerous, scary, unsafe. So we dissociate, not consciously, but obviously in an effort to escape whatever it is.

There are so many horrible things in our past, yet I remember them all. But this, I don’t know. And that scares me.

-Nick

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

Maybe?

We currently have 7 books actively being read on the kindle. We’re following 150ish different fanfics. Our winamp playlist right now has everything from Iron Maiden to chinese erhu music on it. Each of our fingernails is a different colour. There are 12 different profiles on our mahjong game.

Y’think maybe we’re multiple? lol

Ethan

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