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:

Image description: a black and white pencil sketch of a manual, self-propelled wheelchair. I drew this as a teenager.

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.

Image description: A classic wheelchair/disabled sign, coloured to look like the pride flag.

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.

Pimp my Ride 2: The Outfit.

If you’ll pardon the expression, there is another way to stand out as a wheelchair user besides decorating the wheelchair itself, and that is the way in which I decorate myself. I have always loved clothes and it is rare that I am able to resist the tempting call of a sale rail or charity shop bargain. You don’t need to be rich to be stylish.

Showing personality can be as simple as wearing a graphic t-shirt, like a band or film t-shirt, immediately showing the world a little bit about yourself and your preferences without having to say a word. It gives people a way of talking to me that doesn’t immediately concern the wheeled contraption beneath my behind, and that can make social situations a great deal less awkward. When I went to see an amateur production of the stage musical American Idiot, no one had to ask why I would want to see the production simply because my beloved Green Day t-shirt spoke for me.

Image description: sat in a local bar as a student. I'm wearing black converse with silver spots on, black & white striped knee socks, black shirts, a Green Day t-shirt, & a denim shirt worn like a cardigan.

Of course I would hardly be able to go to a job in such an outfit, but formal attire doesn’t have to be dull either. One of my favourite items of clothing is a red skirt with black dots all over it, which I have affectionately christened the “ladybird skirt”. It’s bright and cheerful, and when I wear it I frequently receive complements about my sense of style. Paired with a linen blouse covered in large, black swirls, I look as ready as ever for any work situation, even if the blouse did come from a charity sale.

Image description: stood in my room in student accommodation. I'm wearing a red skirt with black dots on, and a white blouse with black swirls embroidered on the front. My hair is in a bun.

Colour coordination is another simple trick I use to draw attention away from the wheelchair. Pairing black jeans with roses on the hips with a plain black top, studded belt, and red scarf is simple but effective. With Jarred following me around like a lost puppy, I knew that was an outfit that I had thought out well.

Image description: slouched in a coffee shop armchair. I'm wearing black knee-high boots, black skinny jeans with red roses embroidered on the hips, a plain black top, & bright red scarf.

Even evening wear does not have to lack personality as a wheelchair user, although admittedly long, flowing gowns would only become entangled around the wheels and motors on my chair. The little black dress is a timeless classic, and is suitable for most occasions too. Paired with a little colour in the tights I manage to give the classic dress a slight twist.

Image description: stood up in my student residence. I'm wearing black heels, plum-coloured tights, & a plain black dress. The dress is made of a velveteen material and is form-fitting. My hair is straightened and loose.

I also own a leopard print dress, and another black dress, this time with silver sequins on the skirt. Both of these always seem to make people smile when I wear them, and I am told that they suit me well.

Image description: taken from a professional photo shoot. I'm wearing a leopard print dress with a fitted top & short sleeves, and a thin black belt at my waist. My hair is loose. On the left I'm looking down, & on the right I'm looking at the camera.Image description: taken at the same photo shoot. I'm resting my head on my crossed hands, which are placed on the back of the chair. The photo was taken at an angle to make the pose look more natural. I'm wearing a black dress with a skirt of silver sequins, & a purple cardigan.

None of these outfits have ever left me out of pocket, but flamboyance leaves people easily fooled. Before I begin to sound as if this was merely an excuse to show off the few photographs of me in existence that don’t look weird or dorky, I will say that the way I dress does actually have a purpose. It informs people that I am more than a girl in a wheelchair. It tells people that I am a human, with likes and dislikes, and that I can make choices for myself. I find that a little character goes a long way as a social outsider, and anything that helps others to feel less awkward towards disability can only be a good thing as we move towards equality.

Galled.

That very night at approximately 4 am, the pains started up again. The area just below my diaphragm gave the sensation of intense cramping, and the pain spread upwards around the entire rib cage and shoulders. I was denied the pain relief that I had been prescribed the week before and offered one that I was allergic too, which was stated clearly on my medical notes. The pain continued to build up and the nurses on the ward repeatedly rang the doctors in charge of my case, trying to get one of them to come and see me. However, despite the fact that you could hear my screams half way down the corridor, I was deemed to be attention-seeking and unimportant.

At 7 am I rung Jarred. I don’t think I even said a word, just screamed, but he knew what was wrong and dropped everything to rush over to the hospital. When he arrived one of the nurses was sat with me, holding my hand. Jarred said he had never seen anyone look so worried and upset before in his life; the nurses believed me and my supposed attention-seeking antics. Jarred sat by the bed and held my hand while the nurses continued to fight my corner against the doctors. At 9 am the pains began to fade, and by 10 am they had virtually gone. I apologised to those on the same ward as me for waking them up, but not one of them held it against me.

It was evening before the registrar showed up again, clearly unconcerned about that morning’s episode, his response being that “it had gone now, anyway”. He then informed that I had a 3 mm gall stone wedged in the lower region of my common bile duct blocking pancreatic secretions, and that I would be having an endoscopy to get a closer look at it the next day. I had never been so angry with anyone before; had the surgeons checked for further gall stones after removing my gall bladder, which takes only a simple test, this would have been spotted and I wouldn’t have gone through all the pains afterwards.

To numb the back of your throat prior an endoscopy, inhibiting the gag reflex, a numbing solution is sprayed into your mouth which tastes like rotting bananas. After some sedation the camera was passed down my throat and through my stomach into the top part of the intestine, while I lay on my front on the table. The screens above me showed pictures of the gall stone well and truly wedged at the end of the pancreatic duct. After a few attempts to dislodge it the doctors decided that they would need to open the duct to pull the stone out. They sedated me to the point of unconsciousness and removed the stone, finding that the stone was in fact 5 mm wide.

A few days after the endoscopy I was released from hospital, although this time I was less confident that the pains would not return. Thankfully, the passing months proved me wrong, and I was finally discharged from the surgical outpatients clinic the following July. While I find the first surgery somewhat comedic and can laugh at the awkward experience, I still find it difficult to smile when I remember its aftermath.

Utterly Galling.

5 days after returning home from hospital the pains returned, but this time they were much more intense and lasted longer. I ended up in accident and emergency, and within five minutes of arriving I was being treated because of my breathing difficulties. 10 ml of intravenous morphine later I was feeling a lot better; it’s difficult to tell whether this was because of the pain relief or the fact that I was as high as a kite. It was difficult for Jarred to tell too, because apparently my speech was an incomprehensible slurring murmur.

I was transferred back to the care of the surgeons who had removed my gall bladder, who this time were far less welcoming and seemed to consider me a waste of time. However, having had more than enough pain and vomiting for one year crammed into a matter of days I refused to go home without some form of medical help, and Jarred thankfully backed me up on this because it gave him a few days where he could leave the toilet seat up without being nagged.

First of all I had a chest x-ray. Being a somewhat busty woman, this was actually quite difficult, because when I was told to press my chest against the flat surface of the x-ray machine, my stomach couldn’t touch the surface, and perhaps this is why the x-ray showed nothing.

Next, they tried a CT scan, which is like being passed through the hole in the centre of a large polo mint. I was quite happy to watch the cameras spinning around me; it was strangely hypnotic. They took one scan without any dye injected, and then another with the dye which would highlight my blood vessels to spot any problems occurring in the cardiovascular system. The only thing wrong with this dye is, because of its ability to produce a sensation of warmth in the thighs, it quite honestly felt like I had wet myself. Apparently this sensation is perfectly normal, I was assured by the radiographer, and I was relieved to find that I hadn’t wet myself at all.

The CT scan showed nothing so then I had to have an MRI scan. Of all the tests I had had this was the one that made me feel deeply uncomfortable. My face was less than a foot away from the white roof of the tunnel, and I imagine that for anyone with full-blown claustrophobia it is a daunting experience. I managed to keep calm, although I couldn’t help being annoyed that the grey stripe painted along the roof of the tunnel was off-centre and wonky.

The night after having the MRI scan a registrar came to visit me while my parents and Jarred were there. He told us that he had seen nothing on the scan, despite him not having the special training on interpreting MRI scan results, and when I pointed out where the pains were the most intense, he told me that it wasn’t the liver that was hurting. This was despite the fact that the liver spans the abdomen just below the diaphragm, which was exactly where I was pointing. My mum, who is a nutritionist herself, looked like she wanted to rugby tackle the registrar to the ground, and both my dad and Jarred who have no medical background at all knew where the liver was. The registrar tried to discharge me but I refused until the pains had been dealt with properly. Little did I realise at the time that my stubbornness would prove to be such a wise decision…

A Galling Experience.

As a 20 year old woman with a healthy body weight and balanced diet, even the radiographer was surprised when, during an ultrasound scan at the local hospital, my gall bladder took on the appearance of the asteroid field scene in Star Wars Episode 5: The Empire Strikes Back. I had been suffering periods of intense pain just below my diaphragm for about a week making it difficult to breathe, and blood tests revealed that one of my liver enzymes was at almost ten times the concentration it should have been. Anyone with medical knowledge will now be shouting at the screen “gall stones” and they are not incorrect. My gall bladder was crammed full of the blighters, and was so inflamed that they were worried it would burst.

Image description: a diagram showing where the gall bladder is found in the abdomen. The gall bladder is highlighted in green, and rests beneath the liver, above the stomach and small intestine.

24 hours after the ultrasound scan, which I suppose I ought to be grateful found gall stones and not a baby, I was being prepared for emergency surgery. The surgeon visited me on the ward shortly before my operation and she perched on the bed to explain what was wrong with me, and what the procedure was. As a nutritionist with a lecturer who specialised in liver and gall bladder disease, I was well aware that the gall bladder “was a bag of bile that helped digest lipids”, and what exactly was entailed in an emergency laparoscopic cholecystectomy (emergency key-hole gall bladder removal), and took great delight in informing the surgeon as much. Fortunately she saw the funny side of this, as I only realised after I had said this that it probably wasn’t sensible to annoy someone who would shortly be digging around inside my abdomen while I was unconscious.

I was wheeled down to theatre on a rickety trolley and was surprised at how calm I was feeling considering that this was the first time I had ever had surgery. In the preparation room the surgeon asked me how I was feeling, and in response I did perhaps the most British thing anyone has ever done, and said;

“I’m good,” while giving a thumbs up.

I woke up just under two hours later very dazed and confused, particularly because the cannula had moved from my right elbow to my left hand. I was also rather disconcerted to find that I was still in theatre; thankfully the operation had been completed, and they were simply injecting the last lot of morphine prior to transferring me to the recovery room, but it scared me nonetheless. The morphine must have knocked me out again because I woke up about an hour after this in recovery, and after a few minutes a porter came to return me to the ward.

A few hours after coming out of surgery I realised that I needed to pee. There was, however, one small issue. Trying to get to a toilet while attached to a drip and oxygen tube, with a drain hanging out of my right side and still feeling woozy from the anaesthetic, is like trying to ride a bicycle backwards up Mount Everest in a blizzard. I resorted to the use of a commode, which was made far more awkward by the presence of my parents who sat outside the cubicle. Perhaps most embarrassingly of all, I had to get Jarred, who was also visiting me, to pull my kickers down for me, as I was so tangled and confused that it was simply impossible on my own. Fortunately, the effects of the anaesthetic seemed to wear off overnight while I slept, and by the morning I was feeling significantly better.

I was discharged later that afternoon, with some strong pain killers and anti-sickness tablets to help me cope with the after-effects of someone repeatedly prodding me with metal sticks. I was only sad that I wasn’t allowed to keep my gall stones, which I still hold would have made a very interesting artefact to display on my shelf of interesting things. However, my galling experience was far from over…