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 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 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.

Gall bladder

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 disease which encompasses 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 cholestectomy (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…

Dalek Days.

Daleks first petrified Doctor Who fans in the early 1960’s, and quickly took on pop culture status with their inhuman features and grating speech, mostly gaining notoriety for the simple tactic used to defeat them; climbing stairs. Of course, when they gained the ability to levitate in the 1980’s, people watched horrified as the Doctor and his companion realised that they could no longer rely on their usual trick of running up the stairs. I remember watching the tense episode in 2005 when the Daleks once again demonstrated their gravity-defying abilities, and 9-year-old-me wondered just how many hair driers were needed to enable to Daleks to do this.

Dalek

Unfortunately, it appears that some people cannot comprehend the fact that Doctor Who, including the Daleks, is entirely fictitious. I say this because it seems to me that I am often equated to Daleks as a wheelchair user, or so the look of fear on people’s faces when the disabled person talks to them suggests, and they assume that wheelchair users also have the ability to levitate. Therefore they see no problem when a lift or ramp is obstructed, or when there is simply no lift or ramp as well as a flight of steps, and they wonder why I am frustrated or upset.

When I’m out and about, I often find cars parked over the area of the pavement sloped to the level of the road. While prams, bikes, and even a small manual wheelchair might be able to cope with a small drop of a few centimetres, a powered wheelchair is just too heavy to risk such a manoeuvre, not to mention the fact that it’s actually quite painful. If the driver is even in the vehicle, the usual response to my predicament is to be told that the car will only be there a minute, but of course when I round the corner and find another vehicle doing the same thing for the same reasons, it could end up taking half an hour to travel what is only a five minute amble. I deal with this by setting off ridiculously early for every appointment I have to make, so that if I face an obstruction I can find a route around it, but I still sometimes end up late.

I also have to be very careful when trying out new venues for the first time; I’ve been told to meet someone in a pub who knew I was in a wheelchair, to find a 5 cm stone step in the doorway, and no ramp available. The solution suggested to me was to drive up to it a bit faster, have someone push the wheelchair from behind, or to climb out the wheelchair and have someone carry it inside for me. Any of these could have damaged the wheelchair, which costs the price of a small, second-hand car, and I knew that my insurance policy would not cover any damage inflicted by these tactics. I chose to vote with my wheels, feet would be the wrong word, and went to other pubs that didn’t require you to complete a Paralympic event to get a pint.

I understand perfectly why the pre-levitation era Daleks had a somewhat grumpy temperament, as I only wish to complete a degree and get a job, never mind world domination (that will come later). Now, of course, I have a little less sympathy for them, although admittedly fighting with such ignorance on a daily basis is highly irritating, and I wouldn’t blame them for bearing a grudge.

It has been suggested to me that I should dress up as a Dalek for Halloween, but unfortunately while I have a creative imagination, my abilities to physically produce my creations are the equivalent of a drunk elephant squaring up to a mouse. I also don’t own a whisk or sink plunger, which is rather the set-back.  Instead I will have to rely on the simple phrase “I’m not a Dalek”, and spend my money in the places that have had the wherewithal to spend their money on providing wheelchair access to enable me to spend my money there.

The Clouds Behind the Silver Lining.

Given the health issues I have had throughout adolescence and early adulthood, is it perhaps of 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 ache, joint pain, dizziness, nausea, and headaches for several days following such exercise, they 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 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 sent me over the edge; 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, which reminded me all too well of the meningitis.

After the suicide attempt, I began to self-harm, and it quickly became 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 have my self-harming tendencies significantly reduced.

The Real Mermaid.

I have been extremely fortunate in one aspect of my illness, and that is the fact that I am still able to swim, albeit 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 eye brows 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 this blog, as people are amazed at someone at least attempting to live as normal a life as possible.

There is one particular experience from one 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 bright blue and covered with pictures of a coral reef and a rich ecosystem of tropical fish. 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 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, than 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, 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, astounds me to this day.

Starfish.jpg

Special Edition: The Perfect Surprise.

In one of my early posts, I talked about wrestling company whose shows I frequently attended, and how welcoming and accepting the wrestling fans are (https://diaryofadisabledperson.wordpress.com/2017/02/26/an-unlikely-crowd/). These shows have become a staple of the relationship I have with Jarred, and mean a lot to us. We attended one such show on Sunday evening, and that evening turned out to be an extremely special one…

It was cloudy but dry when Jarred and myself reached the venue of the wrestling show, and we wandered indoors to the area reserved for wheelchair users. As the crowd gathered around the ring, the music was playing so loudly that I could feel my wheelchair vibrating, but the chatter of the crowd was not drowned out, growing increasingly louder with anticipation as the show approached. Then the music stopped, and the commentators introduced the show, before the wrestlers for the first match came striding out to their respective theme songs.

After four matches the interval was announced, which mainly served as an excuse to revisit the bar. I wasn’t drinking that night as I’d had a stomach bug and was still feeling a little rough, and Jarred hadn’t finished his drink so didn’t need to go to the bar. Instead, he came and stood on my right side, took my hand, and removed the ring I received as a gift for my 18th birthday from my godmother. The ring had been selected by my godfather, but he passed away when I was 12, giving the ring additional sentimental value that no sum of money could replace.

Once the ring had been slipped off my finger, he got down on one knee, and asked me to marry him. In the middle of the crowd the proposal was somehow beautifully private, and few people appeared to notice. I nodded before replying “yes” over the music, too stunned to say much more at the time. Jarred then slipped the ring onto my left hand as my engagement ring, kissed me gently on the cheek, and then we prepared to watch the second half of the show.

At the end of the show, we left quite quickly by our usual standards, and meandered home along the pavements. As soon as the door to my flat had closed behind us, I rang one of my closest friends. Towards the end of secondary school, we had made a semi-serious promise to act as bridesmaids at each other’s weddings. She was the first to hear about the engagement, and was more than happy to fulfil her side of the promise.

The next day was a flurry of phone calls and Facebook posts letting our friends and families know what had happened. The outpouring of well-wishes on social media was almost as overwhelming as the proposal itself, and I knew that this was a moment worth documenting. Although this doesn’t particularly relate to disability, Diary of a Disabled Person seemed the perfect place to write about the perfect surprise.

Engagement

Cue the Music.

I met my best friend during fresher’s week in my first year of university, when he tried to get between me and free pizza, and I accidentally ran him over. He was wearing a blue t-shirt with the Cookie Monster’s face on it, so when I looked up to apologise, I came face to face with the Sesame Street character. After that we would regularly eat together, and started to spend the majority of our evenings in each other’s company.

One of our favourite pass-times was to play pool while listening to music, and people would often gawp at the girl in a wheelchair swearing, laughing, head-banging, and occasionally potting a ball of the right colour. Mostly, people were surprised that someone disabled would want to do something so “physical”, despite the fact that every four years the Olympics are followed by a similar, quite famous competition. While pool is hardly an Olympic sport, it was still unusual to see someone like me even attempting something designed for able-bodied people.

I certainly wouldn’t say I’m anything special in terms of ability when it comes to playing pool, as I almost invariably lost, but at risk of being reduced to a cliché, it wasn’t the winning that mattered to me. It was that I could do something normal, and that with only a slight change in the way the pool cue was held so that the cue was supported above my right shoulder to avoid twisting my back, I could partake in the average student life. We could have a laugh together, argue over which song to play next, and revolt against the establishment by putting plastic cups down each hole to avoid having to pay for every game we had (you didn’t hear that one from me). There were numerous instances when the white ball would bounce off the table when trying to perform a trick-shot, and I would have to dodge quickly to avoid having my face re-shaped. On one occasion the ball even landed straight in my lap, and so I conveniently didn’t have to reach out onto the table for it to take my next shot.

Although my friend has since left the university, we still try to see each other as often as we can, which given that he lives on the wrong side of the Pennines (a dark place we call Lancashire, which is far inferior to Yorkshire) is quite impressive. Whenever we do meet up, we usually find the chance for a quick game of pool. I still have the plastic cups with me for when they’re needed…

Mr Right for the Wrong Reasons.

Being disabled doesn’t just impact the one with the disability, but also those around them. Family, friends, and colleagues have to adapt quickly to accommodate someone’s needs, which can be a daunting and problematic task at the best of times. As a young adult, no one has felt the effects more than my other half, Jarred.

I was already disabled when I met Jarred at a bands and beer night hosted by the university. Barely anyone showed up to the event, which started late, and as we were among the first to arrive we got talking. Then I kept bumping into him when eating my evening meal at the refectory, where he appeared every night at 5 pm without fail, which apparently was no coincidence. Over the next few months we got to know each other, usually spending a couple of hours together a day, and sometimes heading out to pubs and bars on an evening. Three months into this routine he asked me out, and the rest is, as they say, history.

Well over a year later, Jarred confided in me that one of the most irritating things about dating someone who was disabled was the way he was treated because of it. When we are out together people will treat him as if he were God, giving him looks of admiration for daring to defy society by putting up with the disabled girl and making her happy. Truth be told I’m a natural blonde who’s naturally busty, likes rock music, Star Wars, comic book movies, and wrestling, and apparently I have a good personality too. Jarred becomes extremely frustrated that no one seems to understand that he’s not dating me because he feels sorry for me, or because he wants to be politically correct. He’s dating me because he likes me, and the wheelchair doesn’t even come into it.

Not only is this an insult to Jarred, this is insulting to me. It suggests that due to my backside being parked in a wheelchair, I can’t have a personality or intelligence, and my boobs instantly become unattractive. It suggests that the only reason someone would ever want to spend time with me is to become credible to others, and raise their charitable profile. It suggests that taking me on dates is only done out of political-correctness and sympathy.

Jarred is my “Mr Right”, and I have never been so sure of anything in my life. He’s “Mr Right” for the right reasons; he cares about me, he makes me laugh (usually at his expense), he looks out for me, he respects me, he treats me equally and as an intelligent individual, and he has done all of these things from the day we met. We have fun together, and enjoy each other’s company. He’s not “Mr Right” for the wrong reasons, but neither of us seem to be able to escape the concept. Discrimination is not always directed at me, or even intended, but it still exists in the sympathetic and hero-worshipping stares of strangers, including those around me right now, as we sit together writing in a coffee shop.Dry Dock.JPG

Disabled Benefits That Aren’t Money.

Despite all the hassle that comes with using a wheelchair, there are a few small perks in the midst of my hectic life. Most of these are small, and perhaps insignificant, but they are still positive things that wouldn’t happen if I didn’t use a wheelchair. Since I am often subject to other’s pity, it seems reasonable that I should introduce some of these concepts to the glorious source of useless information and time-wasting that is the internet.

I have discussed how I am regularly treated as if I were stupid, and am spoken to in patronising and condescending tones. While this is endlessly annoying, it does have the silver lining supposedly displayed by all clouds outside of Yorkshire; I am able to get away with what is deemed by others to be immature or childish behaviour. I can openly laugh at toilet humour in public, chase pigeons along the muddy pavements, do doughnuts in my wheelchair in the park, and best of all, I can go and see children’s movies at the cinema without judgement. The best examples of this were going to see “Minions” and “The Secret Life of Pets” at 19 and 20 years old respectively, and despite my age, none of the cinema staff so much as batted an eye lid. My dad, who was at least as excited as I was, was presumed to be a poor carer subjected to such childish amusements simply to please me, so also evaded judgement.

Other benefits arise from the physicality of using a wheelchair; shoes are never worn out by treading the unforgiving streets of Leeds and Bradford, and since mine now last me for many years, I no longer feel guilty if perhaps those shoes come with a larger price tag.

Similarly, one embarrassing situation that plagues my able-bodied counterparts derives from gravity, and that is my inability to trip over. Spider-man will never be able to impress me by catching me and my lunch at the same time, so he’ll just have to use webbing to spell out anti-ableism messages along the bridges crossing the ring road. According to rom-com legend, I’d never have met the perfect man either. However, besides these trivial matters, the inability to fall is highly useful, and never more so than when leaving Wetherspoon’s on a Saturday night.

Another useful perk is the ability to skip my place in a queue and get away with it without making anyone angry, which is of considerable surprise to anyone living in the UK. I am usually taken to the front of queues for the use of disabled facilities such as toilets or changing rooms, and shops such as Primark allow disabled people to pay first at an adapted till only opened when disabled people are paying. During Fresher’s Week, when I went to collect my student card and related paperwork, I was allowed to skip a queue that contained hundreds of frustrated freshers. It is rare that anyone gives me the burning side-eye, tut, and miniscule shake of the head reserved especially for queue-jumpers in England. In all fairness, the queue-jumping rule is usually based on the fact that some disabled people may need rapid access to a bathroom due to their condition, or that their immunity could be impaired and so sitting in the midst of a crowd presents a true danger. However, for the rest of us, it’s nothing short of amusing to be able to get away with something reserved for the closest circle of hell according to most Brits.

As someone who uses a wheelchair, but can also stand up, I have particular fun in shops. The looks of horror, dis-belief, and bewilderment I receive as I leap out of my wheelchair and yell “It’s a miracle!” at the top of my voice never fails to amuse me, although perhaps this prank is a little cruel.

It is not necessary to look upon anyone with a disability with sympathy, merely empathy or compassion. Our lives are different to the able-bodied, but that does not make us inhuman or superhuman, especially as being able-bodied doesn’t eliminate you from experiencing the ups and downs of day-to-day life. The ups and downs do differ between the two groups, but the pattern remains the same; karma doesn’t discriminate.

A Small Corner of the Internet.

Shortly after I was diagnosed with chronic fatigue syndrome (CFS), sometimes known as myalgic encephalomyelitis (ME), I visited the NHS website to try and find out more about the condition, and what it entailed for me in terms of symptoms and treatments. On one page, several charities and support groups for people with CFS were listed, among them the Association of Young People with ME (AYME). I admit that I am sometimes wary of support groups, as sitting in a small and exclusive group and bemoaning out trials is not going to integrate that group with the rest of society. However, when I followed the link to their website, I found lots of information available about campaigns, events, and medical research surrounding the condition, and the general feel of the charity was a somewhat optimistic one, without being unrealistic. I decided to sign up to the charity, and within the week I was a member of AYME.

AYME provided a free bimonthly magazine called Cheers for it’s members, but it’s main attraction was the chatroom provided for members under the age of 26 years old. A similar chatroom was available for those over the age of 26 years, and another for carers of CFS sufferers, with only a small subscription fee for each.

The chatrooms provided a place to talk to other CFS sufferers about their experiences of the condition, advising each other on medical issues, and sharing ideas about how to keep up with education or work while being so ill. While the main theme of the chatroom was the common factor that we all shared, it was not the sole subject discussed. The most refreshing aspect of the chatroom was that not all the discussions concerned CFS; some were little word games like anagrams and riddles, others addressed pop culture, TV, music, films, books, and arts and crafts.

I had been a member of AYME for five and a half years, and had made a great many friends, when I heard the news. AYME was to be closed down, and merged with another charity called Action for ME, where the chatroom was split into under 18’s who still had free access, and over 18’s who had to pay. Action for ME is a wonderful charity, and the merge was sensible in terms of logistics and finances, but without prior warning that the idea of such a course events was even in discussion, this news caught all the AYME members off guard. Many of the over 18’s like myself dropped the charity membership, and even those that stayed were upset at being cut off from our under 18 friends.

A prominent member of the chatroom set up a Facebook group, enabling us all to keep in contact, although it could not be structured or run in the same way as the AYME chatroom. Mere weeks after setting this up, she was asked to take it down as it was not moderated like the AYME chatroom, and those in charge felt that it left younger AYME members vulnerable, despite the fact that I am unaware of any instances of inappropriate language or behaviour occurring on the Facebook group.

The members of AYME were not going to let such a set-back destroy the tight-knit community established on the chatrooms, and set up another Facebook group, this time being extremely careful to distance itself from AYME. So far no one has been asked to remove the group, and the same community can continue relatively unperturbed.

AYME was a wonderful charity while it lasted, and provided emotional relief and support for many thousands of people, as well as educating others about the disease, and campaigning for disabled rights. Through it I have made many friends who I still keep in contact with; I have laughed and I have cried with them, and I relied on their support for a long time. I kept every single letter and card that I received through them, and am mightily glad to have done so, as this truly reflects the profoundly great effect AYME has had upon my life.

AYME

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.