Open training session…

As you all (people who read regularly) know, I expanded my love for the Arsenal back in March when I purchased a Ladies season ticket. Not many people follow the female Gunners so as a special thank you, the handful of ST holders were invited to watch an open training session at London Colney. There was a choice between last Tuesday and last Wednesday. I opted for the latter as they had a Cup match against Watford on the Thursday and I wanted to see how they were preparing for the important match.

The men’s team train in the morning whereas the ladies usually have a session in the evening. I think I am right in saying that the women’s game isn’t fully professional so doesn’t pay too well. Training is at 5pm to allow time for the girls to study at University/College or do their day job before football time. Also, another difference is that the Arsenal Ladies train on AstroTurf inside whereas (I’ve gleamed from pictures) that the men mainly practice outside.

There was only about 10 of us Season Ticket holders but the legendary Maria, who is somewhat of a celebrity amongst the ladies, definitely makes up for a shortage in numbers. We arrived at quarter to 5 so after waiting around for a bit, went inside to the indoor complex (they said it would be chilly but it wasn’t). The session had already begun so we took the safe position at the side behind some netting. I was slightly surprised as none of the training was intense but I suppose the players cannot afford to go mental with a game the next day.

As the team warmed down, Maria treated the players to a quick song, which had everyone smiling before we were all invited onto the pitch to meet the girls. I found this awkward as I clam up around famous people and get nervous conversing with women I don’t know so talking to the Arsenal Ladies was a bit of a nightmare combination. I didn’t know what to say without looking like a muppet so I kept quite. My policy is if in doubt, shut up.

Bye for now!

MiFinder- Who will you find today?

On Friday, I received an e-mail about a new social networking app called MiFinder. The software basically allows users to find other local people in their diverse group and begin chatting online. I’ve got to be honest and say it sounded a lot like Grindr (an app for gay men where you can pinpoint the location of potential partners) but I soon realised it’s a lot less seedy. I thought are disabled people really desperate to find friends who also have some sort of impairment? At first, my answer was no as disabled people want to be part of society and have a mixture of friends, able or not.

However, the CEO and Founder Gabriel Saclain said that the app is not just about making friends, “meeting like-minded others is important to share common experiences”. This reminded me that speaking and learning from people who have faced similar difficulties is helpful. For one, you feel less alone if someone else has faced a similar problem. Also, they might know a useful piece of information. For example, I didn’t realise blue badge holders could park free of charge for up to 3 hours in Drovers Way (multi-story car park at the back of M&S in the city I live) until recently.

Knowledge being spread through word of mouth is key for a disabled person. The council or government does not usually pass on the right information to the correct people. Even when the local authority does want to help, finding out what you wanted is not straightforward and often takes a long time. That’s why informative websites about disability exist and is one of the reasons I write this blog. I want people to learn and use any newfound information in their lives. In a similar way, the MiFinder app allows knowledge to be shared but it is more 1 to 1 and the local aspect may be more helpful than reading the latest post ‘Wheelchair Boy’ moaning about access in St. Albans.

I’ve already downloaded the app on my iPad and would suggest you do the same by visiting www.mifinderapp.com. I know I’ve sort of sold it as a ‘make a disabled friend’ app but it’s not. MiFinder is predominantly about celebrating diversity and building a community, which Gabriel in turn believes “can help break down barriers”.

Bye for now!

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!