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.

Special Announcement!

Recently, I’ve been working on building up my professional writing portfolio, and this includes doing some freelance work for Cracked.com. My debut article for the international magazine has just been published, and can be accessed here:

http://www.cracked.com/blog/5-ways-my-disability-actually-improved-my-life/

I aim to continue working with Cracked.com, who have been extremely supportive, and are the magazine to give me my first big break.

This week’s proper blog post is down below; so don’t forget to check that out too! Welcome to anyone who has found this blog via Cracked.com!

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…

The Clouds Behind the Silver Lining.

Given the health issues I have had throughout adolescence and early adulthood, it is no surprise that I suffer from chronic depression. Some argue that since depression is so commonly experienced among chronic fatigue syndrome (CFS) sufferers that it is a symptom of the condition, and in our cases not a disease in its own right. I find it difficult to fathom how this makes much difference as both conditions are treated by trying to control the symptoms, and not by targeting the cause of the diseases which are largely unknown.

Whatever the case may be, I find the depression one of the most difficult things to cope with surrounding my condition. If I am tired I go to bed for a bit, and if I am in pain I take some pain killers and have a warm shower. Even if these do not eradicate the symptoms completely, in most cases they will lessen them to a tolerable level. However, once the depression rears its ugly head there is very little I can do about it, and it quickly escalates until it becomes all-consuming and inescapable.

A lot of non-medical experts, and even a few supposed experts, have told me that if I exercised more I would be happy. If someone can be happy while experiencing exhaustion, intense muscle aches, joint pain, dizziness, nausea, and headaches for several days following such exercise they honestly deserve a medal.

One of my most severe periods of depression came during the summer of 2012; I was 16 and was supposed to be enjoying the long summer months before returning to education to start my A-levels. During that time the peers at school who could loosely be called friends barely made any contact with me despite having multiple opportunities to do so. My school were arguing about whether I would be allowed to use my wheelchair around school, and whether I could have someone to help me get around as I couldn’t push my own wheelchair, nor could I afford a powered one. The extensive periods of free time lead me to brood over the negative aspects of my life; I had been ill for 18 months at this point with no signs of improvement. I felt that my teenage years, the time all the adults told me was so precious and that I shouldn’t waste a second of, was being taken away from me.

It was a series of minor negative events experienced in close proximity to each other that pushed me too far, and I tried to commit suicide. When I had finally been deterred from doing so by my horrified mother, the mental health service refused to help, and unable to get to see a GP we were left alone, reminding me all too well of the meningitis.

After the suicide attempt I began to self-harm, and it quickly became an addictive and obsessive behaviour. The mental health support systems available in my area on the NHS were appalling, making their services as inaccessible as possible, both physically and mentally. When I finally managed to see a mental health worker the treatment I received was awful, and I came out of the supposed therapy more depressed than when I went in. Fortunately a local charity provided a counselling service of a much higher standard, which was friendlier and more accessible. By the end of the therapy I received from them, and alongside the introduction of anti-depressants that worked well alongside my other medication, I reduced and finally stopped self-harming altogether.

Although I have had brief relapses into self-harming, none of these periods have been as serious, nor lasted as long as before. I still bear marks on my wrists and legs, and after much deliberation I have chosen not to cover them up with tattoos. I fully understand why people might choose to do this and hold nothing against it, but I do not understand why I should be made to feel any less of a person due to the symptom of an illness, in the same way as I don’t hide the walking sticks I use inside of my flat.

I still suffer from depression, and after a recent bout of very serious ill health I have had to increase the dose of my anti-depressants as a temporary measure, until I am at a more suitable time and place to address the issue. However I do not feel as if it controls my life as much as it did, and so far I have not attempted suicide again, and at least my self-harming tendencies have significantly reduced.

The Real Mermaid.

I have been extremely fortunate in one aspect of my illness; I am still able to swim, albeit with a sloppy breast stroke interspersed with doggy paddling when my arms get tired. This is yet another of my activities that causes people to raise their eyebrows when they see the wheelchair gliding over the tiles next to the pool, but most people refrain from comment.

Once in the water the buoyancy lessens the pain in my limbs, and I am able to perform slow lengths up and down the pool, with a couple of minutes break between each 25 metre stretch. Admittedly others using the pool can become frustrated if they get stuck behind me, but I try my best to keep to one side, and give others the space to move around me. It is also in the pool that I have had some of the most positive responses to my disability besides my writing, as people are amazed at someone at least attempting to live as normal a life as possible.

There is one particular experience from a swimming session that makes me smile every time I think of it, and is something that others love to hear about.

One of my swimming costumes actually came from the children’s clothes section and is bright blue, with pictures of a coral reef and a rich ecosystem of tropical fish covering the fabric. On this particular occasion I was wearing some starfish-shaped earrings that I am rather fond of, and the combination of the indoor lighting and water made my hair appear slightly red.

There was a small boy with his mother who had been watching me swim slowly up and down the pool for some time, and I made sure I smiled at him as I waded past to climb out of the pool. I hauled up my body, which honestly felt like a block of lead without the support of the water, and swung myself into my wheelchair, something I had done countless times before. The young boy had watched me do this and turned to speak to his mother.

“Mummy, mummy, look, a real mermaid!”

I have never seen anyone look so embarrassed or so hopeful that the ground would open up and swallow them whole as the boy’s mother did at that moment. I didn’t realise that it was possible for all the colour to drain from someone’s face, only for them to blush a brilliant red so quickly afterwards. Before she had a chance to apologise I smiled at her and then started to laugh, which prompted everyone in that section of the pool other than the boy to start laughing, including the mother. I bent over to speak to the boy, and said;

“I’m afraid I’m not a real mermaid, but I’d like to be one.”

I moved away from the pool still chuckling and when I got home 20 minutes later I noticed that I was continuing to smile so long after the event.

The imagination of a child is an amazing thing; the fact that the boy had taken pieces of information that seemingly contradicted each other, such as my ability to swim but not to walk, and string this into what is actually quite a logical conclusion when you really think about it, astounds me to this day.

Image Description: my gold starfish earrings resting on a cream tabletop.