Daniel

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#BeWeirdStaySane

I am aware that my recent blog entries have been somewhat on the serious side and so I have decided to take a leaf out of the wonderful Shane Burcaw’s book and ‘laugh at my nightmare’! (LAMN link).

I have decided to write a list of the 6 weirdest things that I do in order to deal with the effects of my disability.  I don’t mean things like ‘drinking through straws using a lidded beaker to prevent spills’, or ‘having people cut my food for me because if I try it is likely to end up on the floor’.

I mean 6 things that might be unique things that I do.  I will be interested to hear from anyone that can relate!

1.       I like popcorn.  It is low on the glycaemic index which makes it a good little snack food for a diabetic.  I don’t want plain popcorn, that just tastes like little balls of cardboard.   Sweetened popcorn is nice but probably has more sugar than a diabetic is supposed to consume. Salted popcorn is ok but the aftertaste of a salt overload is minging!  So I compromise with half my portion salted and half sweet, all ready mixed. When I want some my Mum will put my portion in a bowl and hand it to me.  And now is my problem.  How do I get the lovely popcorn snacks from the bowl, to my mouth?  Picking the kernels out by hand is not an option as due to the worsening dexterity of my fingers most of it is likely end up on the floor.  Likewise, if I try to use cutlery and also popcorn doesn’t fit through a straw!! So my solution = face plant the bowl because popcorn will stick to your tongue!  I can also achieve minimal spillage using this method! #UnafraidToLookStupid .

2.       I buy my trousers two sizes too big. #LookingGoodIsFeelingGood .  It is true that if I could stand then my trousers (currently lounge pants) would drop to the floor.  I don’t just do this to boost my ego and make me feel skinnier, no, I have three very valid reasons:

a.       I have a big butt because I sit on it all day and having larger waisted trousers makes it easier for my carers to dress me.

b.       Being sat down all days means that I am at risk of pressure sores, having my trousers a little bigger reduces this risk and is, well sure, just more comfortable!

c.       Being diabetic I have three to four injections of insulin every day, the majority of which go into my thighs or stomach.  Having a ‘roomy’ waist on my trousers means that these areas can be accessed easily.

Being ‘this’ disabled and needing ‘this’ much help means that I do not have a lot of control/choice over the basic functioning of my life.

·         I get dressed at the time my care agency sends carers.
·         I have a shower on the days that social services have pre-approved.
·         I have tea to drink and food to eat because my mum is kind enough to prepare for me. (not that she would deny me if I asked, she’s too nice!)
·         Etc. etc. etc. etc.…
So how do I cope with this in a perfectly healthy, non-harmful way? I exercise my control muscle over all the stuff that I can, even if it seems stupid to others it is actually very important to me.  It even helps me keep my frustrations in check. (side-note: some people may argue that it doesn’t work and I am still a mardy b****, but I have a lot to deal with ok!! Besides, trust me, I would be worse without it!)

Okay I know I have repeatedly mentioned in my previous blog entries about my obsession with my google calendar, some see it as weird, I view it as practical.  In my experience one of the best ways for me to deal, on a daily basis, is to claw as much control over my life as humanly possible. So my next few weird things have to do with my freaky control issues (I am aware that they annoy people).  So as well as the calendar obsession, I confess to doing the following things:

3.       Planning every outing down to the last detail so I know about timing, access, disabled toilets etc. sometimes even producing a detailed itinerary complete with emergency contacts and possible contingency plans #AlwaysBePrepared .

4.       Feeling the need to be early to everything, which sometimes means that I am early by an hour or even more #AlwaysBringABook .

5.       Keeping my DVD collection (over 200) in alphabetical order, complete with an alphabetised register #AlwaysBeOrganised .

6.       Buying a label maker and labelling my plastic beakers so that I always have the same drink in the same beaker thus avoiding, in my head, contamination (e.g. one for tea, one for water, one for orange…).  Ok that one is arguably quite weird and I can’t really defend it!! #AlwaysBeHygienic .

So, in conclusion, stay sane by being weird.

Mirror, Mirror...

Who is the fairest of them all?  Well not me that’s for sure, but that’s ok and here’s why…

I’m going to go off on a tangent for a sec, but just bear with me for a while. Recently my television viewing has included episodes of ‘Body Fixers’ (E4) and ‘Celeb Botched Bodies’ (C5) (usually it’s ‘Game of Thrones’ and ‘The Walking Dead’ but hey, we’re in between seasons!).

It constantly winds me up that some people in the public eye become obsessed over some teeny tiny imperfection and then actually have a risky operation to try and fix it which ends in one of two ways:

1.       They then notice another imperfection that needs fixing leading to more surgery resulting in more risks and a never-ending pursuit of unobtainable perfection.

2.       It goes wrong (more often it seems) leading to complications and more risk-taking blah, blah, blah…never-ending pursuit of unobtainable perfection.

I always think WHY? Why are they doing this to themselves when they are (well mostly) pretty and talented enough to have drawn the spotlight towards themselves anyway. Is it due to peer/media/social pressure?  I mean I’ve read enough to know that being famous can sometimes mean a lot more than just acting or singing it can mean total invasion of your private life (arguably if you let it, not every famous person has their life on display) and also high profile criticism of the way they look or bullying remarks about a particular feature.  The cyber trolls or even just plain old fear of aging and showing those dreaded wrinkles will force people under the knife.

So, what business is this of mine and why does it annoy me so much??

Well I guess it really is none of my business.  Even if these modified human faces are everywhere (and not in a cool Persona Synth way either!).  If people want to change themselves and have the crazy amounts of money they need to do it, then it’s their life and their decision.

However, …

This annoys me because there are so many people out there that are scarred and loose limbs through attacks, accidents and fighting for others and the things that they believe in.  So many people that develop life threatening illnesses and so many people that are born with life limiting deformities and disabilities (me included).  NONE of these people chose to be that way and probably wish with all their heart that it would change. But it doesn’t.  And it can’t.  And the people with bodies that work and look how they should continue to butcher themselves and risk their lives and waste their money all for the purpose of trying to make themselves happy.  They won’t…ever.

Having a visible disability, for me, means that as well as having a (depressingly long) list of stuff I can't do, when people meet me it can go one of three ways:

1.       People assume my disability affects my mental capacity and either talk to me as if I am a child or totally ignore me to try and avoid their awkwardness/embarrassment or speak to those around, about me, despite me being present (‘How is she?’ GGGRRR)

2.       People are over-eager to prove they are okay with my being disabled by noticeably making a point of saying hello and starting a conversation about the one and only topic they believe I am interested in (WTAF!) This is usually the time that they temporarily hurt themselves and had to use a wheelchair/crutches/stick (and maybe said person will raise their voice so that others will notice their benevolence).  These people have good intentions and I would never be rude, although I really want to and they will probably get an eye roll from me when they have gone!

3.       People treat me as they would any other person, see me as a person and not just my manky outsides.

(Meeting people from category 3 can be rare so when you make a friend like this, recognise it and hang on to them!)

It took me a very long time to come to terms with, accept myself and be ok with me being completely physically imperfect and my constantly changing degeneration.

By long time, I mean probably about 20 to 25 years of my life!

By my physical imperfections, I mean unfunctional, twisted feet, weak and useless legs, broken bladder needing a supra-pubic catheter (SPClink), a lot of excess stomach fat, broken pancreas causing type 1 diabetes (IDDM link), weak and uncoordinated hands and arms, nystagmus, dysarthria, liquid dysphagia, ANSD etc.…etc.…etc.…

It took me so long to personally accept my body as it is because it took me a long time to accept the fact that all of my physical problems are completely beyond my control.  I do not have the ability to change anything and no amount of money will cure me (well, more money would make things easier by allowing me to afford better equipment etc. but that is a different blogging subject!).

Once I made peace with my physical self (I mean everything still sucks but I will never stop trying) I felt as if I could cope with life in a better way, be kinder to others and try to positively influence those around me.  I still get MAJOR confidence wobbles, frequently, but it always passes.

Look I know that sounds like crazy, optimistic, unrealistic drivel.  I can even hear how sickeningly false it sounds as I reread it.  For me it is true though.

The true legend that is Roald Dahl wrote this in his book ‘The Twits’:

I think that sums up the subject nicely. Just be a good person.

Now when does TWD start?

(in reference to my earlier blog submissions: a haircut does NOT count as a body modification. Tattoo's are a permanent form of body modification but the tattooing procedure is not a risky operation, which I suppose is why programs like 'Tattoo Fixers' exist!  Always think before you ink!)

Undefined: Sexuality, Gender, Disability...and me!

I went to see Josh Widdicombe’s touring comedy show the other day (link to Josh’s website).  I love watching ‘The Last Leg’ (LL link) and a few years ago I was lucky enough to see Adam Hills perform his stand-up and he was fantastic (Alex Brooker, watch out you’re next!).  Whilst Josh was not the best at improvising (microphone breathing is not attractive!) his stand-up routine did make me laugh and his reminiscing of his younger years was highly amusing.

Josh was supported by a very funny lady called Suzy who I had never seen or heard of before and it is her stand-up routine that has inspired me to write this blog entry (thank you Suzy x).

There I was, all dressed up for the show wearing my semi-new and expensive ‘going out’ top from Next (well £30 is a lot for a top in my terms!), with a touch of make-up and my new hairdo and in the fabulous company of my sister…then some of Suzy’s comedy made me simultaneously laugh out loud and blush like mad (thankfully the lights were down!).

Side note: it is physically impossible to shrink down and hide whilst sitting in a large power chair with a chest strap!!

Embarrassing comedy moment number one:

Suzy: "This haircut is not an accident – yes I am a lesbian."

Well thank you, my new haircut is remarkably SIMILAR TO YOURS!!

Embarrassing comedy moment number two:

Suzy: "I know all about checked shirts because I’m a lesbian."
Yes, you guessed it, my NEW TOP IS CHECKED!!

Fear not Suzy you have not ‘outed’ me. There is nothing in my closet except my clothes and occasionally a nephew pretending to look for Narnia.

This very funny occurrence (together with reminiscing about various throwaway, teasing comments from others over previous years) got me thinking about sexuality and disability.  This is not an unfamiliar subject for me as I wrote several assignments on this subject for my feminism module as part of my Health Sciences degree.

Over my three years at University I had several relationships and spoke with/witnessed the ups and downs of the personal relationships of my friends, all abilities, all genders.  Currently I happen to be an eternal singleton, having been so for the past 15 years and I do not see this status changing, however to be honest I am not looking for it to change and that status, for me, is filed under the name ‘unimportant things’.  I have enough meaningful relationships in my life through friends and family and so many physical issues that maintaining a relationship with a boyfriend/girlfriend or whoever I would choose to be with in that manner, is just not a priority for me.

It makes me laugh that in stereotypical terms, your sexuality can be (wrongly) judged upon by something as stupid as your clothes or hairstyle so in order to straighten out a few rumours and stereotypes, here is my list of rights and wrongs:

CORRECT:

Everybody should be able to have a relationship with whoever they want regardless of gender, sexuality or ability (or clothing!).

WRONG:

Disabled people are asexual (definition link).  (My singleton status is not only due to my disability, there are other issues at play such as my impossibly high standards).

CORRECT:

Just because I have a framed picture of Angelina Jolie as Lara Croft hanging in my room does not makes me a lesbian (She is hot though right!?).

WRONG:

I am pansexual (definition link) as I have #Pan on my twitter page.  (I have this on my page as I believe in total non-discrimination, though I would also include ‘all abilities’ in this definition too).

CORRECT:

Just because I have ‘a little thing’ for Matthew McConaughey does not mean I am definitively heterosexual (He is hot though right!?).

WRONG:

People should ‘come out’ and declare their orientation, beliefs and preferences

(Why???).
Some people choose to be out and proud and that’s okay.  Some people don’t and that’s okay too.  Really though I do not care how you define yourself just be a good, kind, respectful person.

So in conclusion I, like most disabled people, would not define myself asexual – you may just consider me as undefined, just, as with my disability, accept me as I am.

(Maybe because I have not had enough experience to be able to define myself and A. I don't want to, B. I shouldn't have to justify myself and C. It amuses me to let people wonder!!)