Tag: disability

Unbecoming Is Hard

Bones

I have been peeling myself apart, slowly but surely, piece by piece. I take each piece and examine it, because without understanding your habits, you cannot change them. Without understanding your motivations, your fears, your protective measures, you cannot truly discard them.

It’s difficult and painful and terrifying. It’s powerful and ugly and messy and freeing.

I’ve been doing this work with the Enneagram, which is another one of those ‘personality typing’ things. In this case, it types your personality, points out your primary fear, your primary goal, how you go about it, and how you typically behave when you are wrapped up in your ego – that part of your brain that is linked with your personality and reality testing.

But more than that, it identifies ways to develop, how to let go of your ego, of your fixation with your personality. Because you are not your personality. You are you, your personality is what you have constructed between yourself and the world. It is usually based around a childhood hurt – in my instance, a lack of stability – and how you respond to it and grow your walls around that.

I’m doing this by slowly reading my way through The Wisdom of the Enneagram by Don Richard Riso. I’m doing it slowly for a number of reasons. Firstly, I can only handle so much spirituality talk in one day – I wasn’t raised in a spiritual household and the style and content can be quite difficult for me to take on board. Secondly, I can only handle so many jarring insights into my psyche in one day! There have been moments of physical shock upon reading certain sentences. Even when I don’t get mentally electrocuted, it is disquieting to pick yourself apart and to bring a mirror up to the ugliest parts of you.

It’s what you have to do, though. You need to know yourself, the good and the bad, so you can work on improving yourself and how you interact with the world. I have the time, I have half of the motivation, and the other half is just sheer bloodyminded stubbornness. I pause regularly and let things settle in myself before moving on to the next bit, although I strongly suspect I will be reading over the whole book again. I’m not even up to the bit where they discuss the individual personality types in detail, I’m still reading the explanation on how the Enneagram system works!

Some days I cannot imagine that I will be able to develop past this road block of chronic illness. It has consumed me these last two years – new things have cropped up every few months to drag me back down. It feels like I claw myself back up only to be king hit as soon as I’ve got my feet under me, and I haven’t really been able to process anything that’s happened to me. I’ve just responded and gotten on with it. Processing these health traumas and actually sitting with that feeling is … terrifying. It’s why I have so many coping mechanisms around distracting myself. It’s also probably partly why I sleep so much – can’t process anything if you’re asleep! But running away won’t get me to where I want to be.

So I am slowly but surely dismantling myself and examining each piece of me. It is hard work, and some days I cannot bring myself to do it, but it is worth it in the end.

Your Feelings Are Not More Important Than My Disability

Bones

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I am a people pleaser.  Always have been, probably always will be to at least some extent.  Other people’s feelings are simply more important than my own needs, and I will go out of my way to avoid doing what I think might hurt someone else’s feelings (even if it’s unlikely to actually hurt their feelings).

I also have a warped sense of what will hurt someone else’s feelings, but that’s for another time, and probably a lot of alcohol.

Regardless, I put other people’s feelings above my own needs.  And I do that now, even when my needs are great.

I use a cane to get around.  I’m fine getting around home, but if I’m walking around places like university, or the mall, I need a cane.  It hurts to take little itty bitty steps.  My happy walking is huge swinging steps where I can really stretch out my hips and swing them.  I still need a cane for that, because to do it best I need to keep my hips nice and loose, which negatively affects my balance, but I can do it for a lot longer and it’s a lot less painful.

But yeah, I need a cane to get around.  I have to be careful how I get up off chairs, sofas, and the like, because I have balance problems.  I often have to catch myself with my cane to make sure I don’t fall over.  It relieves a lot of pressure on my hips.

I’m looking into getting an Assistance Dog.  Well, a dog that I can train up to help me with my mobility issues and in the future become certified as an assistance dog when a spot becomes available to do so.  Except for one, big, problem.

My amazing human dislikes dogs.  He does not want me to get another dog.  He gets the pinchy face and says he could not cope with another dog.

Now under normal circumstances that’s understandable.  But these aren’t normal circumstances.  This is a dog that will help me with the mobility and balance issues I have now, and will help me with any fluctuations of my mobility and balance issues (i.e. what I consider to be my inevitable decline).  This is not a pet dog.  This is a working dog.  A service dog.  A dog that provides a measurable benefit to my wellbeing.

I had to say, very explicitly, that it hurt that he could not see past his own feelings to support me in something that will benefit my life and wellbeing, both now and in the future.

Now some people (like my mother) will see that as a very selfish thing, and yes, it is.  Because it’s more than just his feelings – I will also be imposing on his time, he will need to develop a solid working relationship with the dog, he will need one on one training to change his current habits, and he will need to continue to work with the dog.  I’ve suggested agility as suitable work for them both, as it involves issuing commands and having them followed while requiring no contact between the two.

Except that it’s a small imposition to him for a huge benefit to me.  I am disabled.  I will likely always be disabled.  I will likely get worse.

No one is going to stay around with me and help me get up from the sofa, or stay home and cuddle me on the couch when I’m having a flare up day.  No one is going to follow me around uni making sure I don’t fall over, or help me up the stairs.  No one is going to be there when I need help getting out of a chair, or getting up from the ground.

I have to fight to do these things.  I have to fight my own body, I have to fight gravity (damn you and your apples!), awkward chairs and even more awkward canes.

But a dog can alleviate some of that.  A dog may be able to alleviate enough of that that I have more energy to spend on other things.  There comes a point where feelings are overruled by benefit to self.

This is that point.

He’s allowed to dislike dogs.  He can continue to dislike dogs.  I am still getting an assistance dog, and he can either work through his feelings about dogs to be fully onboard and work with me and the dog, or he can go.

Because at the end of the day, my disability is more important than his feelings, and if he cannot work past his own feelings to support something that will improve my disability, then he is not right for me.

Fibromyalgia, Stress, and Exhaustion

Bones

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I had some news on Wednesday that reminded me of my beloved pets’ health, the fact that they are old, with many of the associated diseases, and had a realisation about their mortality.

You don’t think about it that often.  Or at least I don’t.  I’ve had one of my cats since he was barely a month old, and my other since she was 2.  I’ve had my dog since she was 6 months.  My derpy boy is now 13, my girly cat 15, and my pupper coming up to 6 years old.  They’re starting to get into their ‘geriatric’ years.  Both of my cats have geriatric diseases – hyperthyroidism and renal failure (to differing levels) – and my girly cat has other serious problems with her back and legs.

It hit me like a Volvo truck to the face.  They’re old.  They’re going to die.  If I’m lucky I’ll get another 3-6 years out of any of them.  But sometime soon they are going to die, and I’m not ready for that.  I’m not ready for my babies, who I’ve had since they were so young, to be old.

So I did what all people do when they’re faced with mortality: I had a meltdown.  I sobbed.  I curled up and rocked for a bit.  Then I sat and put on high quality distractions so I could just exist as a brainless blob for the rest of the day.  By the time I was due to go to sleep, I was already aching.

The next day, yesterday, was agonising.  The stress kicked off a flare.  All my joints were stiff and muscles burned.  My head was foggy.  I could hardly see straight, let alone keep my eyes open.  After a few hours of fighting the fatigue, I curled up on the couch and slept for 5 hours.  I was still incredibly dizzy and exhausted, so I continued my blob.  I slept like the dead.

Well today I’m still overly fatigued and my entire body feels heavy.  Even typing is hard today, and I strongly suspect another nap is in order, despite the long sleep I had last night.  My joints are still stiff and achy, especially my knees and hips.  My motivation levels have completely bottomed out.  My ability to do even easy things, like play a game, is completely nonexistent.

And the only thing I can do is ride it out.  I’ve had to put on hold all the things I needed to get done because I just can’t.  Some of them involve driving for hours and heavy digging, which I can do on a good day, but holy hells bells I can’t do when I’m like this.

When this kind of thing happens you can either fight it or relax into it and embrace it.  I’m still working on the relaxing into it, I really have to force myself.  But it’s better to relax into it than to try and fight it!

The Journey from Victim to Vulnerable and the Dichotomy of Being Disabled

Bones

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I had a thoroughly eye-opening discussion with my therapist the other day.

I spoke to her about what had happened with my friend who, after I wrote my last blog, sent me a long message where she accused me of a lot of things (predominantly to do with empathy and consideration, two things she knows I care deeply about), denied she had ever acted in a way that would have me guard myself against her, attack me for what I did to her by making my decision without consulting her, and then cast herself into the victim.  She used DARVO – Deny, Attack, Reverse Victim and Offender – to a rather good initial result.

But I had an uncomfortable feeling in my gut.  Her response didn’t feel right.  It felt like she was trying to guilt me, to suck me in and force me to conform and appease her.

I contacted my good friend who is well and truly experienced in these things, having had years of therapy to work through a narcissistic mother.  He was the one who pointed out what she was doing, and from there we unravelled the past abuse and control so I could see it for what I was.

I explained all of this to my therapist and she pointed out to me that my friend (well, now ex-friend) exists in the Drama Triangle – that is “Fixer”, “Offender” and “Victim”.  The alternative triangle is “Support”, “Assertive” and “Vulnerable”.  Now I exist in this latter triangle with my good friends, and this was where I thought our relationship had existed.  Looking back now, even my behaviour indicates that we weren’t.

I feel like when I acted, when I advised her of my decision, I was being assertive.  I definitely wasn’t in the offender role, I was very careful with my wording so the ‘blame’ for our incompatible conflict styles didn’t rest on her, but rather on both of us, because it IS both of us who have incompatible conflict styles.

Her response, however, was entirely trapped within the Drama Triangle, and she was trying to pull me back into it.  She was very clearly attempting to goad me into responding and returning to her triangle, which will feed her need for drama (she once admitted to me that she would actively seek to start fights, and she would actively continue fights with her best friend – this included calling her a bitch – because she wanted to).  I refused to do so.

We have since had a number of university classes together, in close enough confines, but without direct interaction.  I have felt myself subconsciously fall into the ‘victim’ mentality.  My thoughts go sad, I hunch in, and I feel guilty at the same time as feeling abused.  This is not a role I want to be in, because it means I have fallen back into the Drama Triangle, so I take a moment to breathe, draw my shoulders back, and reaffirm myself and my actions.

While I’m not around her, I am able to stay in the other triangle, in the ‘assertive’ role.  When I am around her, even with her very deliberately and completely cold shouldering me, I find myself falling back into her triangle.

This is because our relationship exists in a ‘closed’ system, where our roles are fixed and there are set rules.  I was, of course, cast into the role of ‘helpless cripple’ while she was in the role of ‘fixer’ or ‘hero’.  In a closed system, there is no movement about the various roles that one can be in a relationship, there can only be these two roles, and when one person in that relationship attempts to move into a different role, or out of the fixed role, the system seeks to return to homeostasis.  That is, the system seeks to return that person to their fixed role, sometimes through any means necessary.

In my other relationships, I exist in ‘open’ systems, where we move through the various roles one can take in the relationship depending on what’s going on at the time.  This means when one person is feeling vulnerable, the other can support them or be the hero, and vice versa.  There is the give and take of healthy relationships.  There is also room to exist in two states which, for someone who is disabled, is exactly what we do.  We exist as ‘vulnerable’ (as we are disabled, and therefore always vulnerable to some extent) but we can exist as ‘hero’ at the same time.

This is the dichotomy of the disabled.  We are always ‘vulnerable’, but we exist beyond that at the same time.  It’s a surprisingly difficult concept to wrap ones head around, and indeed it took me until earlier this year to really grasp it.  Initially, it was my own mentality trapping me there.  Then it was her mentality trapping me there.  Being a pathological people pleaser meant I adapted to what was expected of me, and remained adapted to that long past where I should have.  I remained in her closed system, and placated her closed system when she snapped (because I took a teeny tiny step out of it), for quite some time.

But now I’ve challenged that closed system, and I have removed myself from her Drama Triangle.  She made an attempt to draw me back into both and, due to a combination of being blocked and having no phone credit, as well as being surrounded by amazing friends, I did not return to it.  I did not placate the system, and I did not engage with her aggression and abuse.

It’s a surprisingly freeing feeling.

I Don’t Want Your Pity

Bones

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I’m back at university, which means interacting with other people, group work, class-wide work, and all that jaz.  This of course means explaining to a new group of people that my medications can make it difficult for me to talk at times – I’ll forget words, stumble over others, supplement one word for another without noticing at the time (I usually notice a few seconds later that I’ve done it), and the like.

And now explaining why I have to look like a robot and have no facial expression because I have trigeminal neuralgia throughout all three trigeminal branches – optic, maxillary and mandibulary branches.

Why I’m only coming to compulsory lectures / tutorials / practicals for a little while.

I am in an amazing group for my group work.  I am in a group that love each other dearly, who are open and inclusive, and who are genuine rays of sunshine.  I know their looks and their consideration come from a place of genuine care, but I don’t want it.

I don’t want it because it means they hear what I’m saying, and they think that’s awful, and I can’t allow myself to think that, because if I do I will break.  Because this is my normal, this is my life, it can’t be awful, and I can’t think that it is.  I can’t let myself think that my life is awful.

Because once I go down that road I meet nothing but expansive depression, and I don’t have the time for that shit.  I have a degree to smash.

I also don’t want the pity from my friends.  Or suggestions that I should take a semester off.  Not when I’m actually doing better, not when I’m improving day by day, not when they don’t see that because they don’t interact with me day by day.  While I appreciate it’s from a place of concern, I also found it rude and overbearing.

Except I also feel guilty for finding it rude and overbearing.  I feel guilty for asking her not to mention it again, for asking her to trust me when I say I’ve got this.

Managing disability surrounded by able bodied people is a challenge.  Dealing with their perceptions, their opinions, and their ignorance is, at times, completely beyond me.

So instead I whinge about it in a blog.  Hey, it gets it out there, and it makes me feel better, and hopefully someone else will read this and know they are not alone in what they are feeling or what they are struggling with.

I don’t know the answer to these challenges, I just know that I have to work through these feelings to understand what it is I don’t like and come out the other side.