Life’s too short…

I can’t predict the future but let’s face facts. Friedreich’s Ataxia means I’m not going to live a long and healthy (that boat has already sailed) life. Sorry if that’s a morbid thing to say but I’m just being honest. There’s no point in me burying my head in the sand on the subject of death. Everyone else does but I don’t know why because all humans die, it’s just some pass away sooner than others. Personally, human mortality means that life should be embraced and lived to the full. I accept my life is not going to be the longest but that allows me to enjoy everything a little bit more.

Every now and then, you are reminded that this cliché of ‘Life’s too short’ rings true. I had this moment earlier today when I logged onto Facebook and saw that it has somehow been five years since a boy in my form passed away. Now, I’m not going to claim that Elliot Simms and I were best mates but we’d often have a laugh, whether that be making up songs or inventing the bachelor club (not to do with super noodles) of which I’m still a member of. He was one of the few people who I felt comfortable around and would make an effort to talk to me.

I do think of him from time to time but the fact five years has passed eventhough it feels like yesterday just illustrates that life is extremely short. Them five years have completely flashed by. It’s like 9/11. That seems quite recent but it’s the 13^th anniversary this September. I suppose the point I’m trying to make is that time is on no ones side so people should live with no regrets. That’s not a new mantra but one that everybody should follow regardless of whether you’re ill or disabled because unfortunately, it is unknown what is around the corner.

I hope the post hasn’t depressed you all too much.

Bye for now! 

Not going out…

Another weekend has passed where I stayed in and continued my life as a social recluse. I’m not asking you all to feel sorry for loser ‘Wheelchair Boy’ who has no friends because even if I was popular, I probably wouldn’t go out much either. The reason being is that on most occasions, I don’t really enjoy myself. People think I’m having a great night but that’s a cover and deep down, I’m questioning why I even bothered to come out. The problem is I never seem to remember how depressing it is to be dancing in a nightclub on your own and seem to trick my mind into believing that next time will be brilliant.

When I do have a night out, I usually begin with a trip to the pub/bar to catch up with my friend but I find it an ordeal. Firstly, my hearing problems make conversation difficult. Secondly, I feel the need to have an alcoholic drink but feel quite sick after one. Thirdly, old faces who never spoke to ‘Wheelchair Boy’ at school are suddenly my best mates just because I’m out like one of the normal lads. Also, I’m not claustrophobic or anything but I don’t like packed rooms, with people bumping into me and clambering over my chair with drink. The word ‘sorry’ becomes meaningless when it’s used so many times.

After the pub, I normally want to go clubbing because I have some idealistic view of how the night will pan out. I picture myself dancing to music with girls queuing up wanting to pull me. However, that never happens. Instead, I end up dancing to a really bad selection of music because the DJ’s are usually awful and having girls coming up to me kissing me on the forehead. They normally whisper something in my ear but again I can’t hear. It’s probably something patronising about the fact a disabled person is actually out in a nightclub ending with the word “babe” or “hun”.

I’m not saying I won’t go out again but just that I’ve never gone out and thought “this has been an incredible night”. What’s wrong with staying in, ordering a takeaway and playing FIFA all night? At least if I want to put music on, I can choose the playlist.

Bye for now!

Work in progress…

When people ask wha me what I am doing writing wise, I don’t want the answer for the rest of my life to be “a few blogs”. Yes, I am proud of writing ‘The Adventures of Wheelchair Boy’ and want the world to know about it but I also want people to be impressed by what I am up to. That’s why one of my current projects I am working on is a website for the St. Albans District Access Group. The chairman knows that I am a writer and has asked if I would be the editor. I accepted because it’ll give me something to focus on this summer.

I have other ideas in the pipeline for this summer but I’m going to keep them to myself as I might not get round to them. It’s just I have big plans but my life gets in the way. There are some days where I simply cannot work, either because I get distracted (a genuine writers problem) or feel tired so my brain cannot function properly. Other times, I’ll be in the mood to work but some kind of stressful issue such as contribution to care will arise that needs to be dealt with. I have quite a few things on my ‘To Do’ list but usually only manage one, maybe two in a day.

After leaving University, I had an idea to write a sitcom pilot based on this blog. Nearly a year and a half later, I have done next to nothing. Partly down to the reasons I explained earlier but also because being funny in a script is harder than it appears. Scenarios that sound hilarious in your head are really not on paper. I haven’t given up and will probably come back to it but I’ve learnt to keep my mouth shut until things are done. Otherwise, people ask about how the comedy script is going and I’m just left feeling awkward.

Remember: Slow and steady wins the race.

Bye for now! 

Eyes wide shut…

Just to confirm, I am not asleep while typing this post. I had to say that because a lot of people will see me and think that I’m either struggling to stay awake or have overdosed on sedatives.  Yes, I do have fatigue issues and get tired easily but that has nothing to do with my dopey look. Friedreich’s Ataxia affects most muscles in my body, including ones above the eyebrows that lift my eyelids. This means I have this permanent shattered expression even when I have just woke up. Even when I physically lift them, they soon revert to the half closed position.

The doctor’s have discussed the possibility of performing surgery but I’m not willing to go down that route yet. My sight is not affected by these drooping lids (except I find it difficult to use binoculars) so it’s only a cosmetic issue at the moment. I’m not really too bothered about how I look, I just thought I’d explain in case anyone ever wondered. So when we are talking and I look like I’m falling asleep, it’s not necessarily because you are boring me. Most times, I look drowsy because of FA but those who understand my condition probably already realise that.

When someone comments that I look exhausted, I just shrug and agree because I can’t be bothered to explain that I always look like this. Mind you, I’d love to see someone’s face if the answer I gave was “it’s because I’m disabled”. That would soon shut them up. Like all things that ‘Wheelchair Boy’ encounters, people mistaking my Ptosis (the official term that doctors use) for me sitting up all night watching T.V. boils down to ignorance and a lack of knowledge. I mean only an idiot would go up to a Chinese person for example and say “you look tired” just after they’ve woke up. So why do it to me? Isn’t it obvious it’s linked to my condition?

Bye for now!

Good news…

I am pleased to announce we have found an accessible villa and have booked up for a week in July. As you all know, I have been looking for a summer holiday since the turn of the year but it’s not easy to find a reasonably priced villa with a private pool and the correct disabled facilities. Most places claim to be wheelchair friendly but that simply means step free access. I’m not sure if some people think that the only problem a disabled person has is an inability to walk but can shower, go to the toilet and get in the pool like everyone else.

My holiday search began in Los Angeles, California but I soon realised that visiting Hollywood et al is more of a sightseeing trip and it would probably be best to go separately. For me, a family vacation is all about relaxing by the pool so the location is not important. As long as it’s hot, I’m happy. When I went to the travel agents, the woman suggested Orlando but the cost of the flights put me off so I decided we’d stick to Europe. I continued to look online and found a few in Portugal but they were too small for our party of 8.

After a few more days of trawling the Internet, I found a lovely villa in Tuscany that ticks all the boxes. It wasn’t too expensive; there is a wheel-in shower and a lift so that I can get into the pool. I’ve only ever been to Venice but I know that Italy is a beautiful country and the weather should be impeccable in July so I can’t wait. Not only am I looking forward to the relaxing break but pasta is my favourite food so I’m basically going to heaven.

Also, I’ll hopefully be able to top up my tan because I’m not a fan of the pale look (no offence mime artists).

Bye for now!

Miracles…

When Newcastle recovered from 4-0 down at half time to earn a 4-4 draw with Arsenal back in 2011, the media and fans alike described the result as miraculous. However, I strongly disagree with that labelling. The Oxford English Dictionary definition of a miracle is: ‘An extraordinary and welcome event that is not explicable by natural or scientific laws and is therefore attributed to a divine agency’. My problem is that something as simple as a football match can easily be explained. Without going into too much detail, we lost that match because our players lost their heads (one got sent off, one gave away a free kick and two conceded penalties). The second half implosion was as a result of the team being stupid, not because of some Godly intervention.

The reason I have decided to write about miracles is because of a recent documentary fronted by the legendary presenter Louis Theroux. As most people know, I’m a staunch atheist and do not believe in a God (for obvious reasons) so for a T.V. documentary to make me question these beliefs shows how powerful the show was. Like I said, the concept of miracles has always been absurd to me as everything that has ever happened in my life can be explained using logic and reason. Since watching episode 2 of Louis Theroux’s LA Stories titled ‘Edge of Life’, my opinion on whether miracles exist has become somewhat hazy.

SPOILER ALERT! DON’T READ ON IF YOU HAVEN’T SEEN THE EPISODE YET AND ARE PLANNING ON WATCHING IT.

At the beginning of the documentary, Louis is in hospital with a 22 year old college athlete who is in a full coma following a drug overdose. Langston suffered severe brain injuries and doctors feared the worst. His unresponsive state and lack of brain activity meant that recovery seemed impossible. However, his family remained positive throughout even though in the unlikely event that Langston did wake up, he would face the rest of life as a vegetable. Their unwavering faith that he would wake up appeared crazy and illogical but I suppose if you’re in that desperate situation, you cling on to any lingering hope.

Viewers, like myself, get the biggest shock at the end when Louis revealed that an incredible 37 days after first falling into a coma, Langston woke up and began breathing on his own. Furthermore, he wasn’t a vegetable as the doctor’s had predicted. In fact, the athlete made a full recovery and was soon discharged from hospital. The next scene shows him returning to Cedars-Sinal Medical Center in L.A. to thank the doctors and nurses who helped him. It is so strange to see him go from being asleep in bed to being up walking and talking.

I still don’t believe in the traditional concept of God as there is too much evidence going against it (my disability being one) but miracles is a subject that I am truly on the fence with. Maybe I need to actually witness one in order to start believing.

Bye for now!

Guestbook- Entry 3…

Hey there everyone! My name is Jake.

I met Glen at his secondary school a few of years ago. As well as being such a brilliant individual his blog is informative, funny, entertaining and utterly inspiring. It is remarkable that he is raising awareness for Friedreich Ataxia. Let his amazing work continue.

From the year 2012 until 2016 I am studying English Literature and Creative Writing at the University of Hertfordshire. Being an avid fan of literature and also being an aspiring writer and novelist I have set up ‘Jake Borrett’s Writing Blog’. This can be found at:

http://jakeborrett.blogspot.co.uk/

The blog itself features two main parts. One is essentially creative writing work. This takes the form of prose, poetry and scripts. I have uploaded creative writing associated with horror, fantasy, mystery and a number of other genres and will continue to do so. The purpose of this is to entertain you and to showcase my ability as a writer.

The other side to my blog is the articles. These articles will inform readers on a range of issues associated with ambition, education and health. One essential part of this is my personal experiences living with two certain illnesses. I was diagnosed with Crohn’s disease, an inflammatory bowel disease at the age of thirteen, as well as Dyspraxia, a neurological condition when I was eighteen. Some of the articles will attempt to raise awareness about these two conditions and about my personal experiences living with them.  

It would mean a huge deal if you could read and share my writing blog. Writing is my passion and allows me to turn my deepest desires and fears into work you can enjoy. It is my goal to share my work to the world, but I need your help to achieve it.

Thanks very much for reading and have a brilliant day.

As Jake said, we met at Secondary School where we both studied Philosophy & Ethics (my next post will be on Monday and the subject is loosely based on what we learnt) in Sixth Form. I only saw him during lessons but soon discovered that he puts maximum effort into everything that he does unlike lazy ‘Wheelchair Boy’! That’s why you should all read his blog so that all his hard work is rewarded.

Don’t worry; you are not suffering from DE JA VU! Jake has written a guestbook entry promoting his blog before but had to stop writing shortly after. He has recently decided to start the page up again and I thought my readers might be interested as, like me, he discusses his conditions and is ultimately trying to raise awareness for Crohn’s/Dyspraxia. Also, anyone who enjoys reading will love his pieces of poetry, scripts and short stories, which show off his immense talent as a writer.

As always, goonerglen1@gmail.com is the e-mail if you’re interested in writing a future guest post. Being in a wheelchair isn’t a stipulation so don’t be put off. You could write about things you’ve learnt from this blog or maybe someone you know is disabled. Perhaps, you have a rather different perspective on life and want a platform to air your musings. As long as it’s thought provoking (even though not all of mine are), I’ll publish it.

Bye for now! 

Bad weekend…

The past weekend wasn’t good at all. A trip up to Merseyside was a waste of time for all us travelling away fans as Arsenal suffered yet another pasting, losing 3-0 to Everton (for anyone who’s interested, I’ll share my thoughts on the defeat on ATeamEffort over the next few days). Not only was the match terrible but we also got a parking ticket when we visited Blackpool on the Saturday. My mum wanted to cry but I was not surprised and found it weirdly quite fitting as the Penalty Charge Notice perfectly illustrated my recent post regarding street parking (http://theadventuresofwheelchairboy.blogspot.co.uk/2014/03/universal-rules.html).

The match kicked off at 13.30 on Sunday so instead of getting up early in the morning, we decided to book into a hotel. Experience has taught us that Holiday Inn Express’ provide the most suitable facilities for disabled people at a reasonable price. However, it was Grand National in Aintree on Saturday so either there was no room at any inn in the Liverpool area or the prices had rocketed. So we booked into the HIExpress in Preston, which is not far from Blackpool and was only half an hour away from Goodison Park.

We didn’t arrive at the hotel until about 2pm on Saturday, just in time to check in. After unloading our luggage, ‘Vegas of the North’ was our next destination. It might sound soppy but I have many fond memories of Blackpool from visiting throughout my childhood. My last visit came back in 2011 and that was also special as Emmanuel Eboue gave me his scoring boots after Arsenal won 3-1. However, I shall now associate the place with giving disabled people parking tickets although that may be harsh as it more the actual system’s fault.

As I said in a post last month, the rules regarding Blue Badge parking are not clear at all because they change according to geographical location. In Islington (where the Emirates stadium is), disabled car owners can park for an unlimited time in Resident Permit bays. The same rule applied in Blackpool the last time we were up there. Apparently, it no longer does as we soon discovered. Some readers might be thinking that is down to the North/South divide but it is simply not as badge holders can use permit bays only 59 miles down the road in Liverpool.

The St. Albans District Access Group met on Monday and I mentioned the ticket I got. A visually impaired lady told me that she was also caught out in Blackpool the other week as she also believed Blue Badge holders could park on Permit Bays. This again highlights the need for universal rules as it not only me who’s being tripped up (excuse the awful joke). I do have a book with all the rules in but it says that it may vary depending on the local authority. Not helpful.

Bye for now!

Saturday Night Football (SNF)…

What with the ‘Tomas Rosicky gave Wheelchair Boy his shirt’ hype that engulfed me for a few days after the Tottenham match on Sunday 16^th March (time flies), I forgot to post about what a brilliant day I had at Sky the previous day. I received a generic e-mail from Applause Store asking me if I would like to apply for Saturday Night Football tickets. After checking the fixtures, I realised Arsenal weren’t playing until the Sunday so I thought I might as well go. Being the loser that I am, I had nothing better to do on a Saturday (although the glorious sunshine on the day made me question why I was going to spend the afternoon in a dark T.V. studio).

For any non-football fans, SNF is a show on Sky Sports nearly every Saturday night during the season that centres around the game that kicks off at 17.30 (the title is pretty self explanatory). A small studio audience is assembled to watch presenter David Jones and former player Jamie Redknapp plus a special guest give an analytical commentary throughout the day. The audience watch the 3pm kick offs simultaneously on large screens, which is unique because legal reasons mean that the matches cannot be broadcast live on the television. However, this is just a starter before the main event.

The doors opened at 13.00 and after a brief wait, we were escorted into the huge studio in preparation for the start of the show at 14.30. There were only 150-200 in the audience but it was a bit like herding cattle, with the floor manager directing people where to stand. Don’t worry. Everyone, apart from those who can’t like me, only had to stand for about 30 minutes while David and Jamie discussed the team news for the first set of games in a segment called Team Talk.

After watching various matches at once (I didn’t know what one to watch), Gianfranco Zola came out to give his opinion ahead of the main match between Aston Villa and his former club Chelsea. Again, everyone had to stand to watch the pre-game show. This time it was 45 minutes but when the match began, they brought the benches back out for the audience to sit on. At full time, the floor manager asked for people to stand one more time for the final part of the show.

At the time, Arsenal were still in contention for the title so I desperately wanted the home side to beat one of our rivals but my head was saying a comfortable victory for the team I hate so much. I was so sure Chelsea would win that I bet my brother that if Aston Villa won, I would hump Jamie Redknapp’s leg on camera. Villa did surprise everyone and made me very happy but I wimped out of the bet. Partly because I am a good boy but also the stage had a step up to it so I couldn’t get to Jamie (plus, I don’t want to get barred from the Sky Studios for future recordings).

Food and drink was supplied free of charge so overall, it was a brilliant day and something I’d definitely be interested in doing again. When I was in the hub surrounded by screens and other likeminded people, it felt like I was in some sort of weird football heaven. You could see me clear in the front row so that was a bonus too being the media whore that I am. Who would have predicted that I’d be even more famous the next evening?

Bye for now!