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 available, 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 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, only 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 just to get a pint.

I understand perfectly why the pre-levitation era Daleks had a somewhat grumpy temperament, as I only wished to complete a degree and get a job, never mind world domination (that will come later). Now, having gained the ability to levitate, I have a little less sympathy for them. Admittedly dealing with ignorance on a daily basis is highly irritating, and I guess 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, 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.

Starfish.jpg

Special Edition: The Perfect Surprise.

In one of my early posts I talked about a 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 4th June 2017 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 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 moved away 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…