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 bemoaning our 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

A Way With Words.

One of the funniest things about being a wheelchair user is just how many phrases in the English language contain typically ablest sentiments, that when said to someone using a wheelchair could be construed as offensive, even though in the majority of cases no offense was intended.

It was mid-summer in 2015 when I bumped into my neighbour as we passed the shop he had just visited. Being British, we stopped to make awkward conversation limited to topics such as the surprisingly nice weather and how clean his car was. At this point he laughed and said that the car was his pride and joy, and he used it everywhere outside of work. I replied, “It’s ok, I don’t walk anywhere either,” which served to break the ice and remove the last of the awkwardness between us.

In September 2016, I visited PC World to help Jarred choose a suitable laptop for his studies. After selecting the perfect machine we went to a desk where we could discuss student package deals including word processing and anti-virus software. At the desk we were told to “take a seat”, and I simply couldn’t resist piping up with “No need, I already have one.” The poor man looked mortified until Jarred assured him that I was evil and took great pleasure in convincing people that they had upset me, which I was in no position to deny.

On one occasion shortly before Christmas I was due to give a presentation about a group project I had been involved with. The room in which the presentation was taking place was small, and a little difficult to access from the wheelchair being an old building, so I decided to use walking sticks to cover the short distance from the reception to the presentation as I was feeling relatively well. My lecturers were aware that it wasn’t common for me to do so, and couldn’t hide their surprise when I walked in alongside my peers. “Christmas miracle,” I said in response to their bemused looks, which consequently lightened the atmosphere allowing the presentation to run smoothly.

Probably my favourite of all such situations occurred during the pantomime in the Student’s Union, which was like a normal pantomime but with crude language and more explicit sexual references. It was based on Aladdin, and during Jafar’s first scene he recited his evil plan in an animated fashion. At the end of this speech, Jafar declared loudly “Not even you will stand in my way”, and pointed directly at me. In response, I pointed downwards and simply said “Wheelchair”. A flicker of a smile flashed across Jafar’s face, but with all due credit to the actor this was his only break of character while the audience roared with laughter at his predicament.

Some people find my attempts to laugh at my situation odd, and suggest that to some it may even be offensive. However, I am always careful to make myself the subject of these jokes to avoid causing offense to others. What I do find is that people often don’t know what to say to someone with an obvious disability, so I try to make light of the issue to make others feel more comfortable. Once they know that I am a normal person who is capable of laughing at myself they relax and treat me like a normal person without even realising it. I get a refreshing glimpse of normality, and others lose their fear of talking to disabled people. I fail to see why this is in any way odd or offensive, and if anything I recommend it to other disabled people as a way of integrating with society. In other words, taking a stand for disability doesn’t have to be aggressive…

The Marvel-like Origin Story with Less Explosions – Part 3.

Initially, the Graded Exercise Therapy worked well, but as time progressed it became apparent that something had gone awry. I was being pressured to increase the exercise level too quickly, and the star jumps began to cause intense jarring pains along my spine. My muscles began to ache more than they had before the therapy and my fatigue increased seemingly exponentially. Upon returning to the physiotherapist, I was advised to stop the exercises, and was also informed that I would probably need to start using a wheelchair when I left the house. Even after stopping the exercises, the pain, fatigue, and dizziness continued to worsen, until the state in which I currently live today was reached, and I could no longer walk outside. Being too weak to push my own wheelchair, and unable to afford a powered one, I had to rely on my parents every time I left the house and had no independence.

It took three months of arguing with my school before I was permitted to use my wheelchair in there, making me more and more ill during this time. I was also denied an assistant to push my wheelchair around school and relied on the support of my peers, including those who had previously bullied me, to help me obtain an education. Fortunately after another few months, the school realised their mistake, and when I started my A-levels I was given the support I needed.

I saved up for over a year, and eventually managed to by a second-hand powered wheelchair for over £1,000. It was in this wheelchair that I completed my A-levels, and I gained the necessary independence I needed to attend university. Unfortunately, this wheelchair had air-filled tires, and with the inevitability of death and taxes, I eventually suffered a puncture. My poor wheelchair was unusable and too expensive to repair, so I ended up with a new one, this time a brand new one with solid tires.

New Wheelchair

Even after so many years of medics poking and prodding me, and modifying my medication to treat my symptoms, only one thing serves to alleviate the pain temporarily; hydrotherapy. I regularly visit the local swimming pool, where I perform gentle stretches and exercises, and even swim a little. The water removes the pressure from my joints, and for a few hours after exiting in the pool, I am reminded of what life felt like prior to the meningitis. For the remainder of my time I am disabled and pain-stricken, and while this is inevitably disheartening, there is still an element of hope in my life.

Medical research continues to improve the understanding and treatment of CFS, and without using a wheelchair, I would never have met my two best friends. One is disabled herself which naturally brought us together, and the other got run over (by accident) when he tried to get between me and pizza. Similarly, I would not have met Jarred, my beloved partner-in-crime, who I only met after choosing to remain in university accommodation due to its high standard of accessibility. It is even plausible that I would not have attended university, as the meningitis made me realise how precious life is, motivating me to make the most of it by getting an education. Of course, this blog would not exist were it not for a virus finding my brain tasty.

Disability is not the life sentence I thought it would be, and has enriched and improved my time more than I could ever have imagined, so that I live a full and happy life on wheels.

An Unlikely Crowd.

When I tell people that I enjoy watching wrestling their eyebrows travel so far up their faces that they merge with their hairline. What surprises people even more is that when I attend live shows, I am made to feel the most welcome I have ever felt in a crowd. Many assume that the staged violence draws in a crowd of mentally disturbed misogynists, but the reality is that women enjoy watching sweaty, muscular men run around in their underpants as much as the men appreciate the women.

The main appeal of attending a wrestling show, however, has no element of sexuality. The fact is that the shows are fun to watch, the crowd is a group of friends having a good time, and the wrestlers receive the respect and admiration they deserve for mastering their craft.

You may be wondering what wrestling has to do with being disabled, so I shall reiterate how welcoming an environment it is. I am not stared at, nor ignored, and no one uses condescending tones when they speak to me. My opinions are not immediately invalidated just because I am disabled, and it is rare that the first question people ask me is how I ended up using a wheelchair. I have spent many happy hours in the company of wrestling fans, chatting, laughing, and getting to know each other. Even the wrestlers themselves accept me; when they run around the ring high-fiving everyone there, they always lower their hand so that I am not missed out. Were I to go on a night out with any of these people, I would feel perfectly safe and far less vulnerable than I do in most bars and clubs.

wrestling

Recently, when the show was searching for a new venue, they made accessibility one of their concerns so that myself and other wheelchair users could continue attending the events. This level of dedication to equality is frequently neglected by large international companies, who leave ramps obstructed, automatic doors switched off, and allow disabled facilities to be misused, let alone smaller companies.

When you see someone dressed in all black, with plenty of leather, studs, piercings, tattoos, and eyeliner, wearing a wrestling-themed t-shirt, don’t be afraid of them. When someone tells you that they enjoy heavy metal and wrestling shows, even if they don’t look like that, don’t reject them. It is these people who have unquestioningly welcomed me into their midst, and they have warm hearts and unprejudiced minds. What’s more, they are not afraid to help someone in need, such as a young disabled woman in need of companionship.