Stephen Hawking: A Brief Moment in Time.

In 1963 doctors gave Stephen Hawking two years to live. Little did they know that he would defy all odds, surviving for fifty-five years instead. Most people would have been content to be the medical miracle that proved the doctors wrong, but Stephen Hawking was not most people. He decided to use his time, however long or short, wisely.

Professor Hawking was a brilliant scientist, building on the work of Albert Einstein to send cosmological research in entirely new directions. He re-shaped the way we think about our very own universe, an exceptional feat. Alongside this he also helped to make the incredibly complex research accessible to the general public by making public appearances to give lectures, help produce documentaries, and wrote the book “A Brief History of Time” which does an excellent job of laying out what his research was about and what it all means. Later in his career he also co-authored a series of children’s books where all the events in the stories were theoretically possible, helping to spark interest in the minds of the next generation of scientists. While not a physicist myself, I still feel that his contributions to the scientific community are immense and unforgettable.

For any human to achieve academically what Professor Hawking did would be worthy of celebration, but to do this in the face of an incurable and devastating illness that gradually stripped away his ability to communicate his ideas to others is equally as mind-blowing as any of his research. In doing so he helped prove to the entirety of Western civilisation that disability does not mean that someone is unable to make valuable contributions to society. He helped to normalise disability in the eyes of the public and to raise awareness for the equal treatment of the disabled. By making frequent cameo appearances in TV shows and adverts, often blatantly making fun of his own predicament, he made the rest of the world comfortable with the notion of disability. He humanised us all.

Usually the death of a celebrity might warrant a tweet or a short Facebook post, but Stephen Hawking deserves a whole lot more. As both a scientist and someone disabled, I want to recognise him as nothing short of an icon who changed the world. May he rest in peace.

Image description: a colour photograph of Stephen Hawking.

Things Just Got Complicated.

Relationships are complicated. Relationships while one or both partners are chronically ill or disabled results in an explosion of chaos that equals filling a volcano with Coca-Cola and Mentos mints, and then making it angry by filming it with a phone rather than living (and probably dying) in the moment.

Finding wheelchair-friendly date venues is like looking for a needle in the worlds’ largest haystack while blindfolded, and only being allowed to search with your nose and mouth. Lots of places have steps in the door and the members of staff at such establishments don’t seem to grasp the concept that no, I can’t take a bleeding run up. Sometimes the rarest of all luxuries will be provided in a ramp, or even more special a level entrance. Even then the accessible entrance may require unlocking by a member of staff who is distinctly inside the building, and once inside the tables may be so tightly packed together it’s impossible to get around. I have even known cases where the tables are very tall and I need a periscope to see my drink. Best of all the inaccessibility is usually put down to “well, no one in a wheelchair ever comes in here”, having failed to understand that we can’t get in. So the same few cafes, bars, shops, and the cinema become second, third, fourth, and fifth homes, and I have loyalty cards for every single one. It’s got so bad that the café usually has my order ready for me by the time I get to the counter, and they are on first name terms with me.

Once we’ve embarked on a date the second complication rears it’s rather ugly head. No one thinks it’s a date, probably because going on a date is so damn complicated in the first place. Jarred is mistaken for my carer so frequently I’m considering buying a bell to summon him when I need his assistance. When he puts his arm around my shoulders or pecks me on the cheek, the looks of shock and disapproval he receives is something quite extraordinary. They seem to think that he is taking advantage of an innocent disabled girl to get laid, and that I couldn’t possibly figure this out and defend myself if this was the case. It’s not possible for someone disabled to be in a relationship of their own accord is it? Spoiler alert – it is.

Eventually the relationship progresses to the stage where the two families wish to inspect your partner and their family. Since trains don’t appear to know how wheelchair physics works travelling any sort of distance is difficult, and sometimes the cost of travel or their work and family commitments prevents other family members from travelling up to see us. While to some couples this would be music to their ears because Mother-in-law being an anagram of Woman Hitler wouldn’t be so funny without the Mother-in-law clichés, most members of each respective family are actually nice people. Quite a few of Jarred’s family have managed to travel up to the north of England to see us, and we’ve managed to travel to London for a central meeting point on other occasions. Unfortunately moving closer to them would distance ourselves from my family, and the problem would simply affect different people.

After a while Jarred and I moved in together. The challenge here started when none of the letting agents that weren’t exclusively for student accommodation were accessible, so Jarred ended up doing the leg work there. Then we had to find an accessible home near the city centre within our budget, which was about as likely as an Oompa Loompa being elected for the US presidency. Oh… We found an apartment that was so central to the city that it confused Google Earth, and I could access it by entering the garage and going to the rear of the building. It came within mere pounds of our calculated budget, so I put the deposit down on the flat quicker than Usain Bolt after drinking 10 cans of Red Bull before anyone else tried to steal it, and it is now fully christened with tyre tracks on the floor.

Now I just have to organise an accessible wedding…

Donations.

Due to some technical issues the donations tab that I set up a few weeks ago has not been working. The issue is now resolved (and has been tested by my wonderful fiance).

To donate, click the donate button in the top, right hand corner of the screen (or click the menu button, and then bottom button is donate on phones and tablets), and select your preferred method of payment.

Donations are not obligatory, but any support is very much appreciated.

One Good Turn.

It was a dismal day in late October and the drizzle had soaked me from head to foot as I traveled into town. The light was fading quickly and the temperature falling even faster. There was little doubt in my mind that the first of the winter’s frosts would develop overnight.

I turned left onto a bridge crossing a main road. People were passing across the bridge in droves, it being one of the busiest routes in and out of town for pedestrians. To one side, huddled beneath the railing, was a homeless man. His thin and worn blanket gave little protection against the cold and every possession he had was dripping with rain water.

Nearly everyone on that bridge saw the homeless man and nearly everyone carried on walking anyway. I’m sure they had their reasons. However, for whatever reason, I just couldn’t go past him and leave with a clear conscience.

I had a flapjack in my handbag which I’d been planning to eat upon returning home. I reached into my bag and handed it to him without making a fuss. It wasn’t a big deal; he had far more need of it than I did. He looked up and thanked me with such genuine compassion it took me by surprise. We exchanged a few short sentences and then I set off again, thinking nothing more of the matter.

A couple of months later I was at a Christmas event serving free mulled wine and mince pies, which was inevitably crowded. Among those in attendance were several homeless people, who the staff welcomed along with everyone else.

I was struggling to navigate through the crowd, most of whom completely ignored me if they were even aware of my presence at all. I came to a heavy door, which I struggled to hold open as I tried to pass my wheelchair through the narrow gap without hitting anyone. Clearly someone had noticed my predicament, because I felt the weight of the door taken off my wrist. I looked up to thank the person holding the door open for me, and to my surprise and genuine delight, I recognised the homeless man I had helped before. He simply said “one good turn deserves another”, and then he was swallowed up by the crowd.

A couple of years later I was sat in a bar with a good friend, when the same homeless man walked past us and nodded at me. Naturally this led to me explaining what had happened. When I’d finished speaking, my friend laughed and called me “the Good Bradfordian”, à la the biblical parable.

***

When I was a child attending Sunday school the parable of the Good Samaritan had always confused me. It seemed to me to support basic racism because we are repeatedly told that certain passers-by were expected to help, and that the Samaritan wasn’t simply because of where he was from. I didn’t understand why being Samaritan excluded you from the expectation to help, nor why being from elsewhere guaranteed your help.

Similarly the story also suggested that it was a good idea to help people because you would be rewarded, and the richer the rescued person was, the greater the reward. I failed to grasp why a motivation to do the right thing would be needed, instead believing doing the right thing to be the reward itself.

I expected no reward for being the one who did the right thing. Why should I? Just because I’m from a stereotypically rough city doesn’t mean I can’t help others and have no compassion for them, and neither does being disabled. I am almost certain the homeless man expected no reward for holding the door open for me, and probably failed to understand why others wouldn’t help me either. I would hope we would be in mutual agreement upon this matter; it is simply a shame he may never get to read this.

Boredom Looms.

It’s a commonly held mis-belief that scientists are not creative individuals, but given that we create new techniques and products on a daily basis, I would beg to differ. As a scientist myself I turned to creativity when I fell ill, as suddenly the large chunk of my free time spent being active became an empty void of boredom and brooding. Fortunately over the past few years, crafts as relaxation and therapy have become popular, meaning I had access to a wide variety of relatively cheap materials.

Among the most popular crafts of the time were the small, multi-coloured, elastic “loom bands” that somehow managed to work themselves into every nook and cranny from children’s noses, to between the cushions on every sofa. I bought a couple of books full of patterns and models to make and even bought some beads and charms to incorporate into my designs. I spent many happy hours engrossed in the craft and I don’t suppose many people are excited to receive a huge bag of elastic bands for their 20th birthday.

Although the products of my efforts were somewhat cheap and cheerful, they got me a lot of attention when I was wearing the bracelets, particularly off admiring children. They also made great gifts when I wasn’t sure what to get someone.

Image description: a black bracelet with silver stars woven in.

For our first Valentine’s Day together, I bought Jarred the clichéd aftershave, and also made a dodgy-looking Kylo Ren and Rey out of the loom bands, characters we had both adored in Star Wars: The Force Awakens, and The Last  Jedi. Jarred found them particularly charming, but one of the bands had snapped whilst in the gift bag, and Kylo was decapitated by his own light sabre. Fortunately it was easy enough to weave another band into its place, although his head is slightly askew to this day.

My personal favourite of my creations is the skeleton I produced using white bands, with silver beads for ball-and-socket joints and black beads for eyes. It was far easier to create than it looks but is still effective, and makes quite the addition to the pin-board beside my bed.

Image description: loom band skeleton.

Childish as this craft may seem I enjoy it and find it relaxing, and I enjoy the looks on people’s faces when I surprise them with a little model. They might not be costly or glamorous but people appreciate the time and skill that was put into creating them. All in all it seems to me to be a good use of my time, and is a definite improvement upon being bored and broody.

Can’t Be Treated.

You may have heard the saying “there’s more than one way to skin a rabbit” and I used to believe that this was true when it came to treating a disease. I’ve been through puberty since then, which is enough to make anyone a little cynical, although I have come to realise that the efficacy of a treatment is not always down to the treatment itself but how it is administered. At least, this is my personal experience of Cognitive Behavioural Therapy (CBT).

Graded Exercise Therapy had failed me but surely CBT would help me to control the depression that had blossomed from that experience? Nope.

The problems started when the therapist decided I wasn’t depressed (self-harm and a suicide attempt seem pretty indicative to me, but I’m not the expert), and that the CBT would somehow cure the physical symptoms of my CFS. While the behavioural aspect of CBT, which means making lifestyle changes, is undeniably beneficial for CFS sufferers, I had already been through all that as by this point I had had the condition for over 3 years.

The problems escalated when I was informed that the CFS wasn’t nearly as bad as I had said and that I was merely seeking attention. This was news to me but I could understand why someone might perceive my condition this way. The symptoms don’t visibly manifest themselves and I was smack in the middle of puberty which is a difficult and delicate time. I decided to ignore the warning signs and continue anyway, as it appeared I hadn’t learnt my lesson from the previous physiotherapy experiences.

More problems reared their ugly heads; I can’t say I was too surprised at this point. The therapy office was extremely difficult to get to as a wheelchair user but they refused to come out to me until we agreed to meet in my school during a break time. I also wasn’t being independent enough; I couldn’t afford a powered wheelchair so relied upon an assistant-propelled one, and at the time no other option was available to me. It was even implied during one particularly bad session that my family were holding me back and refusing to let me reach my full potential. By this point I considered the therapist to be somewhere between a moron and Taylor Swift. To give that context, I don’t especially like Ms Swift. The therapy was actually making my mental health worse, not better.

Eventually the time came to review the effectiveness of the therapy, and I’ve never told such a big lie as I did then. I told them I was practically cured and no longer needed their support simply to get myself away from them. Perhaps I should have reported my concerns to the authorities, perhaps I should have spoken my mind. I don’t know. All I could think of at the time was my own self-preservation, and my need to get as far away from the CBT as I could. It became water under a bridge and I moved on.

About a year later I found a private counselling service. I was allowed to take a course that was described only as generic counselling and not CBT, but what I received matches the description of this far more closely than the actual CBT did. Given that it also targeted the depression instead of the CFS, which was what I really needed the help with, it’s not too surprising to say it worked wonders.

Unlike GET, I am not against CBTs’ use to treat CFS. What I am against is it being administered to address the CFS when help is needed for a different reason, and the case being handled with all the insensitivity of an anaesthetised slug. CBT is helpful but only when administered correctly.