Midweek Cringe-Fest.

So I was digging through some old notebooks that my parents had kept and then brought to my new apartment, and I found these two beauties. Bear in mind I was in the middle of puberty, at the peak of awkwardness…

The children smile,

They don’t discriminate,

Very few decide,

To gawp and gape.

 

I’m not so different,

As you’d like to think,

If I may be blunt,

I’m not thick.

 

Please don’t stare,

What if I stared at you?

I’m in a wheelchair,

Not an animal at the zoo.

 

I’d like to say,

That life is fine,

I’m free of pain,

But that’s a lie.

 

I’m not gonna mope,

Though I’d love to cry,

Is there any hope?

Will M.E say goodbye?

 

Please don’t stare,

What if I stared at you?

I’m in a wheelchair,

Not an animal at the zoo.

 

The children smile,

They don’t discriminate,

Very few decide,

To gawp and gape.

Complete with badly drawn wheelchair:

Wheelchair.png

A couple of months after writing that first one, I wrote this:

A giant hoover came out of the sky,

And sucked all my energy away,

Then came the lead weights tied to my limbs,

I have to pull them night and day.

 

I lie awake in the night to find my sleep stolen,

Right from under my nose by a robber,

Unrefreshed, unhappy, and unrested,

Why should I even bother?

 

It hasn’t got better, it hasn’t got worse,

At least I know where I’m at,

I feel so small, so insignificant,

In the wheelchair in which I’m sat.

 

But at least I’m sure of two things in life,

Two things it has taught me so well,

I know for sure who my true friends are,

And not to take them for granted, even if I’m unwell.

Let’s just say that I think my writing skills have improved since then…

Bisexual and Almost Bipedal.

I’m a bisexual, female, disabled scientist; so nuke me, Trump.

My identity is pretty much an amalgamation of social rights issues, but that doesn’t mean I’m not genuine as some people might presume. It’s a strange phenomenon, but I do know a few people with disabilities who are uncomfortable about coming out as LGBT because they might be deemed fakers, and I honestly can’t decide whether the problem is with the way disability is perceived or the way the LGBT community is perceived.

There are people out there who assign themselves a long list of labels to do with gender identity and sexuality that don’t actually apply to them, who do so because they want to be perceived as modern and unprejudiced. While the intention of being open about equal opportunities is highly commendable, it leaves those of us who are genuine a little conflicted, because coming out as a member of the LGBT community for most people is simply terrifying.

My sexuality confused me long before I became disabled, but I was afraid to discuss it for fear of disappointing my parents, or being bullied at school any more than I already was. For fear of what being open-minded would make me, I suppressed any feelings I had on the matter, and vehemently denied to myself that I was anything other than heterosexual. This actually got easier when I first fell ill as I had something else to be concerned about, but as the years went by, no matter how much I stamped down on them, my thoughts would turn towards my sexual orientation time and time again.

Leaving home and heading off to university should have been the time when I started to express my sexuality; I lived alone and away from those who had bullied me at school, but I still couldn’t shake off the fear that engulfed me every time the thought crossed my mind. I kept my mouth shut, as I always had done, and tried to move on.

The thing to finally bring me out of my shell was actually Jarred, who was openly bisexual from the day we met. It sounds ridiculous but I saw the freedom he had in being able to express himself when a good-looking man appeared on TV, and I wanted that freedom. Jarred helped to strengthen my self-esteem and boost my confidence, and I began to realise that if I did decide to accept my sexuality, no matter what happened upon being honest, there would be at least one person I could rely on to get through it. However I was used to being scared of my sexuality, that I would be deemed old to “come out”, and that on top of the wheelchair it would simply seem like a plea for attention, that I continued to keep my feelings to myself.

I can’t quite explain it but one day the desire to have that freedom simply outweighed the fear of appearing fake, and with the help of a glass of wine, the truth seemed to just fall out of my mouth. After a quiet moment Jarred said, “I know.” I stared at him dumb-founded, feeling foolish for thinking that I would have been able to hide something of this scale from the one person I allowed close enough to see such a thing.

I would like to be able to tell you that my fears and reservations about being open about my sexuality evaporated in an instant at this point, but that would not be the truth. I gradually began to make my closest friends and family aware of the situation, always a little reticent for fear that they would react badly, but with each positive reaction my confidence grew, until one last hurdle remained. Now I had to be open and honest with the rest of the world.

A simple post on Facebook sufficed for those who knew me who I hadn’t already told, and then I started to declare myself as bisexual on job application forms. The freedom it gave me in being able to express myself without a serious fear of being deemed a faker for social reasons was even better than I could have ever imagined. For the first time in my life I felt like I had an identity that was true to my own form, which encompassed my sexuality, lifestyle, and preferences. In telling the rest of the world who I was I had managed to find myself.

LGBT

Rolling Rosie.

One of my friends who also suffers from Chronic Fatigue Syndrome (CFS) has just started her own blog, and it may interest you. It’s a quick read! Check it out here: https://rollingrosie.wordpress.com/2017/08/01/is-it-acceptable-to-not-be-accessible-spoiler-its-not/

If you haven’t already, why not like @diaryofadisabledperson on Facebook? You can receive a notification every time a new blog post is released, plus additional posts every single day, and can talk to me personally via messenger. I currently boast a 100% response rate!

Medal of Honour.

Most people upon first meeting me fall into one of two categories; either I am to be ignored as a blemish upon society’s “flawless” beauty, or I am treated as if the life of a disabled person is so grueling that even existing is something of an achievement. I am not brave because I woke up this morning. I am not brave because I got dressed. I am not brave because I ate breakfast. In fact, I am not brave at all. Anyone who has seen my reaction to any kind of insect or arachnid other than a ladybird or butterfly can confirm this.

One unfortunate truth of living with a currently incurable illness is not knowing if you will ever get better or if you will live the rest of your life experiencing symptoms. Given that Chronic Fatigue Synrdome (CFS) is thankfully not particularly life-threatening and only so in rare and very severe cases, my future in terms of health is a big, blank canvas. I do not know when I will get well, if I recover at all, and I do not know how much life I will have left after recovering, if I have any at all. That would be a daunting prospect to anyone and I would be lying if I said that I did not feel fear of such a future. Frequently I am told that this sort of thinking is pessimistic, but it is not. I’m a realist, and this just is a rather ugly aspect of reality.

Those who have seen me at my very worst, barely able to move in bed and having no interest in food or drink whatsoever, would not say I was brave. They have seen me cry, and they have seen me shake with fear when I realise that this could be my life for a long time. They have seen me withdraw into myself shortly before a medic pokes and prods me and then says that I’m a mere attention-seeker. Everyone else sees me on my better days, when I’m cheerful and upbeat because I’m not in as much pain or as fatigued. They have not seen me cry or shake, and when these people tell me that I’m brave, they have not seen a representative view of every aspect of my life.

No one in their right mind makes the choice to experience chronic, debilitating illnesses. I did not make the choice to face this illness, so why should I be deemed brave for trying to live with a circumstance I can do nothing about? Bravery, for me, is when someone makes the choice to face their fears, or to put themselves in harm’s way to protect others. I have done neither, and so will adamantly deny any bravery on my part.

My wheelchair is not a medal of honour. Neither should it be a setback, or invisibility cloak. It is a wheelchair, and it’s only function is to carry me from place to place because I cannot carry myself.

M.E Awareness Week.

M.E Awareness Week takes places from Thursday 11th May to Wednesday 17th May 2017. To commemorate this week, I will be releasing a special blog entry dedicated to a charity that has massively supported me as a sufferer of M.E on Sunday 14th May. Besides this, I will be posting an M.E “Fact of the Day” every day throughout the week on my Facebook page.

If you enjoy reading this blog, then please like my Facebook page, which can be found at https://www.facebook.com/diaryofadisabledperson/?view_public_for=1644357455866689. Not only will you receive a notification every time a new blog entry is posted, but you will receive additional content throughout the week such as photos and fun facts.

Facebook Page

I have set up a Facebook page to accompany the blog, that will announce new blog posts, discuss relevant media articles, and will serve as a place to ask me questions about living with a disability. Please feel free to like the page, and get a notification every time I release material here!

Thank you very much for your readership and support.

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