How did I get this way pt. 2

// draft conversation

Before you read this post, can you take a look at “Integrity torso compromised”. Basically, my spine/shoulder-blade relationship got totally screwed (I.e. they caved in my thoracic spine) and then they used the “abrade” to keep it that way. Permanently.

Not only that, but they kept the “abrade” tight.

Imagine a private conversation:

For context, it’s 2023 in Karori. After getting out of the set of people I was with (family etc), I found a new set of people…

Normal guy, named Ian, the interviewer, maybe a lawyer 

Me, I just want to get my story down on paper

“I want to get my story down”

*recorder is on* *they are taking notes*

Me: This is my first take. We’ve already covered up to age 27.

Ian: so where do you want to begin?

Me: I’m going to talk about my life from about the age of 27 to 33. We already covered up to the age of 27, more or less. So let’s start at the age of about 27.

Ian: so what angle do we take?

Me: I’m just going for descriptive. I’m painting a picture, not crafting a legally defensible statement. I will describe aspects of my life to you, and hopefully it works out.

Ian: I get it, just go. We’ll get the legal stuff done later. Just talk plainly.

Me: The support of my spine collapsed at 27 (described in “integrity of torso compromised”). Things are now different, and I had to live in a screwed up way for years. It was awful, okay. It was hell. It was cold and monotonous.

When the support of your spine collapses, your legs and arms are affected. You cannot use your arms properly, you cannot use your legs properly, you cannot use your eyes properly.*

Ian: What do you mean?

Me: I don’t know how to put it into words, but I’ll try to put it into examples that help you to understand.

Me: I couldn’t wear clothes properly. I couldn’t wear long sleeve shirts for example. I couldn’t wear a sweatshirt. Getting in and out of a large t shirt was difficult. Even large shirts.

I would put a t-shirt on and sometimes keep it on for days (the sweat and grime would build up in my left armpit. It was disgusting). Sometimes I’d go without a shirt for a couple of days.

Ian: Wait, wait? You had grime build up?

Me: Yeah, I had problems. My left arm was so strongly clamped to my left side, that my shirt was stuck there… it was clamped in place. It would accumulate sweat and stink. Also dead skin and grime would accumulate.

Ian: umm

Me: I’ll come back to it later. Can I talk about the cold?

Ian: No, you have to explain. Right away.

Me: The spine tightening thing was so strong that my left arm was strongly clamped to the left side of the body. For long periods of time. I had dark streaks of dirt stuck there. So well engrained that a flannel couldn’t wash it off without hard scrubbing.

Maybe it was that way for years on end (arms clamped). I forget, but umm yes it was, for years. My arms were clamped to my sides. My right arm was clamped a bit, but my left arm clamped strongly.

When I put a T-shirt on, I had to work the t shirt in there. Into the arm pit.

Ian: holy fucking shit, your left arm was clamped _hard_ to your left hand side. For years..

Me: yeah, I’ll get back to it. Clamped. Clamped hard. My spine was so tightened that it was clamped hard. I’ll talk about the cold now. It was cold, okay? Really cold. Summer was okay, but winter was awful. My body was so screwed up that I couldn’t wear jackets or hoodies or sweatshirts. I had issues with wearing socks and slippers. I couldn’t wear socks or slippers. Winter without adequate clothing is awful.

Heating was a problem too. The heat pump didn’t work properly. I couldn’t heat the lounge with the heat pump, it was always too cold. In hindsight, it had been sabotaged. I think I had a fan heater in the lounge. And other heaters in the bedroom. But keeping the house properly warm was often a hassle. My overall body temperature was an issue. I think that my overall body set point temperature changed because I was cold almost all the time. It affected me long term.

Ian: really?

Me: I don’t actually know. I was shirtless often, and had inadequate heating. I think that I became cold adapted. But it isn’t healthy. I think it changes you. It’s not a medical thing, or a scientific thing, it’s like you go dormant from cold.

You’re always trying to stay warm, but you can’t. You get used to it. It becomes your normal. Honestly, it’s not healthy. Being used to being cold is unhealthy.

Me: I’ll talk about clothes more. I can’t explain the cold thing properly. It’s like the cold becomes a part of you.

Clothes…

I wore sweatpants or pyjama pants. But tops were an issue. I struggled with t shirts. The sweat pants were warm enough, but my top half was cold.

Eventually I got some sleeveless shirts. I created a test shirt (flannel shirt) and chopped off the arms with scissors. And that worked. But the arms frayed a bit. A lot. Eventually I managed to get some decent ones made. With arms taken off properly.

That happened when my support worker showed up (G, from Geneva Healthcare). She put together some sleeveless shirts. We bought some XL flannel shirts. And she removed the sleeves, tidied up the cuffs.

I used to need help to get the shirt on, but eventually I was able to do it myself. Geraldine used to help me out on my sleeveless shirts. I couldn’t put them on without her (or Amanda’s help). Umm. I couldn’t dress myself ahahaha. I only learned how to dress myself in my final year. I got stronger by walking and doing “mini squats”. And then I found that I could swing my shirt over my back, and put it on myself. But only after I got stronger. I needed to get stronger before I could dress myself.

Umm. “G” showed up at some point, and she would help me with things like clothes and washing. She would help me get my shirt on. I’ll describe washing later.

Blanket:

I would sometimes use a blanket to warm myself. I’d use a blanket when I couldn’t warm myself with a shirt. You know, when a shirt wasn’t enough.

Here is the process for getting a blanket onto my shoulders. I have the blanket on the chair. Base of it on the seat, rest of it draped over the back of the chair. I take the drape, roll and fold it into the top of the chair. I lay the lower part of the onto my legs. I use a pair of long bbq tongs to pull the left side over my shoulders. I use my hand to pull the right side over my shoulder. I clip it shut with a hair clip. I slip my feet into slippers.

Me: it’s heaven at that point. I’m warm. Just truly warm. My chest is warm, and everything from my chest down. It’s heaven. Everything is warm from the chest out. It’s like being alive again.

When you’ve been cold for ages, and then you’re warm again. It’s like heaven. You feel totally different. I’d just listen to music for about 20 minutes. I can only use the blanket if i don’t have a shirt on. I can’t use the blanket if I have a shirt on. And I can’t explain why. [It causes “mind-body” problems if I use the blanket while wearing a shirt].

Hygiene:

I didn’t shower for about 6 years… Because I couldn’t. If I could’ve, I would have. I wasn’t able to handle stepping into and out of the shower safely, and balancing on the slippery steel. My feet are covered in built up dirt etc, which would have been slippery when wet. I couldn’t have washed my hair even if I could have got into the shower.. I have too much hair. I have too much grease and built up dust/skin/grime in there. I cannot wash my armpits. I cannot get my hands in there. I wouldn’t be able to dry myself with a towel after showering either. Hygiene is awful.

Umm. I didn’t shower for years.

Ian: Words fail me. How can you go years without showering? This is because of the thing they did to your spine?

Me: Yes. I couldn’t shower because of my spine.

Moving along.. I seldom cut my hair. Because pressure/resistance relating to head is awful. I had my hair cut, or shaved sometimes. But it was “costly”.

Ian: how costly? What does that mean?

Me: it really took it out of me. Neck, back issues. I can’t explain how it worked. Whenever I did anything to cut my hair I had problems for ages.

I couldn’t wash my armpits normally, because I couldn’t lift my arms properly. I had to wash my armpits with a face cloth on a coat hanger. With warm water and soap.

Even with the face cloth on the coat hanger, it was hard to wash. Because my arms were so tightly pressed against my torso. Especially my left arm. I sometimes had to kind of push the coat hanger into the gap.

I would wash my chest/belly/groin myself with a face cloth.

I went a long time without washing my back. I had dead skin, and deep, thick dead skin. The skin was breaking down beneath. It was itchy, and disgusting.

I later had a support worker to clean the scabs off of my back. It took multiple attempts to get the skin off. It was a bit of a mission. It was too deep to manage in one go.

I had a ton of grime on my scalp, I had a ton of dead skin on my back. I had dead skin on my legs and arms. It was disgusting.

Movement ability:

Umm. When your spine is borked, and the thoracic/shoulderblade/chest/sternum relationships is “inverted” everything is affected. (Ie, when your thoracic spine has been caved in.)

Movement ability is affected , especially as it relates to arms. I cannot move my arms around properly, the upper arms are clamped to my sides. I cannot move my legs properly. I cannot lift them up properly. For example, I cannot do “high knee marching”. Even my eyesight is affected. Also, I cannot move my neck/head properly. I can’t do circles with my head and neck. It’s weird! Basically you cannot stand on your own two feet, or move around properly. You also can’t navigate uneven ground.

Ian: So, what next? You cannot move your arms legs properly. Can you give me some examples?

Me: ummm, I have a strange way of getting in and out of bed.

Ian: Wait, what? You have trouble getting in and out of bed?

Me: Yes. I cannot get in or out of bed normally. I have to hook my right heel onto the side of the mattress. To get enough leverage to get out of bed. 

I can describe the process of getting in and out of bed to you.

Once I leverage myself into position using my right heel, I balance on my right hip, and then use my right elbow to support myself. And then I come to a sitting position. I cannot get in and out of bed without using my right heel, and also momentum. I actually cannot do it using just my arms. It is really not great lol. It’s sooo horrible. I’m sometimes worried that I’ll lose me the capacity to get out of bed altogether. Remember that at this time, I have no real knowledge of why I am sick/broken. I don’t even know about “abrade tech”.

To get into bed I have to slip onto my right hip, lean on my right elbow. Roll onto my back, shuffle the pillow side to side. Push my head into the pillow. Move my hips side to side. But I also scrunch up my neck, back and shoulders, so that I don’t end up with neck/back issues when laying in bed.

Sometimes I have to get in and out of bed a few times before I can manage to rest comfortably.

[there is a sit stand process to go through, when I am in Princeton Road but I cannot describe it in detail here].

I cannot easily pick things up off of the ground. I have to use a reacher. I cannot get onto the ground and up again. It is dangerous to not be able to get onto the ground and up again.

Ian: please keep going, tell me more

Me: I cannot read books.

I literally can’t read for pleasure.

My favourite thing in life are books. I love books. They are my favourite thing. I love reading. But for 6+ years, I cannot read. I cannot habitually read.

When I was younger, I would read a lot. I’d read because I enjoyed it. And because I love books. And I’d read for the sake of my mind. I like improving my general knowledge? I just accumulate knowledge from books. It’s like an obsession. So I just read everything. Everything. In particular I love non fiction. I inhale books. But I don’t read during those years, because I can’t. It’s awful, just awful.

How did it work? Why couldn’t I read? It was an eye sight thing. Eye sight connected with my spinal health. Somehow I couldn’t read/track text left-to-right without it causing issues with my spine. When I read, it compresses the spine. I don’t know how, but I experimented. I used trial and error and found I can’t really read more than a page or two before it is time to stop..

When I stop, I just have to walk back and forth through the house for a few minutes to let my back reset.. until my back/torso decompresses..

It is difficult to explain.

Umm. They robbed a genius of the ability to read for pleasure. Yeah. Not great. I try to figure out a way to (habitually) read again, but I can’t. I love reading, and if I could read, I would.

Ian: okay, we get it. Sort of. What do we do now?? How do you pass the time?

How do you pass the time?

Me: umm. I pass the time by listening to music. I scroll through stuff on my phone, I walk back and forth through my home. I write in my notebook sometimes. I come up with fun ideas. I listen to dumb pop music mostly. Rock/metal is better, but I need zone out music. Zone out music is better for me physically, but rock/metal is better.

I don’t know why I am sick

I don’t know why I am sick and or broken. I don’t know why my body is doesn’t work. I don’t even know about abrade technology. But I carry on my with life anyway. It is kind of a big deal to have massive physical problems but to have no proper idea of why those problems exist.

Asylum fears, and other fears

I am worried that if things get worse, Amanda will throw me out and I’ll have to live elsewhere. I might end up living with family, and they’ll be unwilling or unable to put up with me, and I’ll end up in an asylum or some other thing, like a nursing home. I am concerned that I won’t survive in such a place. Or, I am worried that if I see a doctor, that they will tell me things like “it is all in your head” or “There is no physical basis for you being sick.” And by being being dismissive, it’ll increase the chances of my ending up in an asylum. I don’t think I can survive in an asylum. I wouldn’t have enough freedom to cope/survive.

I’m also worried about being put in touch with mental health services, or having mental health people put in control of my life. I’m also afraid of having something like a conservatorship placed in control of my life..? Someone like my father being in control of my life. I couldn’t handle having my father having a conservatorship over my life 🫠.

And so I am afraid of the asylum thing, or the nursing home thing.

Hope:

But always I think that things might get better someday, and so I maintain hope.

Ian: what future?

I might have a future where I do something like science. Engineering. Come up with cool ideas, like new home appliances, or medical tech. A guy can dream, right?

But at the same time… I kind of feel like “I’m already dead”. Like my life is over.

It’s awful. It’s like you have no actual existence. Everything is just like, you survive, and you’re freezing cold.

And you think that “I could kill myself”, but at the same time, I could just put it off for another day. And that way, just as long as I know that I could quit life, I know I can carry on. Life is easier when you acknowledge that you have the option of suicide, at least in theory. Umm. It sounds melodramatic. But my life really was that awful. Besides, with the whole “I’m already dead” thing is that if I end up with a proper life again in future, anything else is just bonus. [I’m being bullied into removing the suicide comment. But I’m going to leave it there, as an act of mild obstinacy]. Suicide is actually a dumb idea though.

It’s all just bonus, if I have any life at all after those awful years. Any half way decent life is “pure gift” after those years. As far as I was concerned, I died at 27. Sort of.

Life can be good though, right? Books, music, cats, coming up with fun ideas. Tea, video games, movies, comedy, martial arts movies. Spending time with friends, playing cards, board games, video games, or just talking. A lot of conversation with interesting people.

There’s always the possibility of life that is good, or at least I hold on to that possibility.

*************

Umm, at any point over the years 27 to 33, they (especially J, could have turned off the “abrade” to set me free). They “wooled” (I don’t know why, but they like to use the word “wooled” when they talk to me mentally) my spine at age 27, and then kept it ruined for years. Including all that stuff with the thoracic spine and shoulder blades. It is HELL to live that way. They ACTIVELY and deliberately kept me in that state, when they could have freed me from it easily. [they held my spine hostage for years, and KEPT the abrade SUPER tight for 6-7 years. When the abrade is tight, the shoulderblade/thoracic/sternum relationship never heals, and the legs never work, and the arms are very tightly clamped to my sides.] I’ll try to explain it better later..

They ruined my back!! And then kept the abrade so tight that I could never recover.

You just can’t live like that.