Is it because I'm disabled?
I haven't been keeping up with writing this blog... but I do have my head injury to blame? Hmm... anyway, just so you know, everyday of my life is amazing, it comes with its challenges but that makes it interesting as everyday something different happens - well these past few weeks just prove my point, right where to begin... Four weeks ago now I decided to go clubbing with my brother, as this was the first time we'd been out together this year. So to begin the night at the club, we had a drink (mine was a coke lol) then my brother went to the dance floor (you know 'just stand there, looking cool) but as you can imagine, for me this isn’t as easy, I don’t mean looking cool, cos that’s natural for me, I mean the standing still bit, with a drink in my hand. Anyway back at the bar. This was even more precarious than I first anticipated, I was there trying to drink my coke, whilst the club's getting more n more packed. I was trying desperately to dodge people that were pushing past me, attempting to sip my drink with the straw, manoeuvring my tongue round the glass to find the straw in doing so (shaking involuntarily of course)... Did I mention before my brother could even pay for his round, I’d finished my drink. (I can finish my drink quick like that 😝 that just being another 'gift' of having this head injury). We then went outside to get some air, which turned out to be the smoking area. But as neither of us smoke, we walked around the area before coming to a halt (a stationary stance that all cool men do, rocking before standing still) then this girl started talking to my brother. Me, standing there... like a lemon, a cool lemon of course. The girl talking to my brother had a friend. Now this girl looked nice. Nice to me anyway….but as I was not looking for anything that night, I was being too cool for school (lol) and by being cool, I mean by saying nothing but being pleasant, whilst standing ‘cool’. She told me to come find her in the RnB dance room. So later we went back to the RnB room, where I spotted her so I said to my bro "There she is, do we go?" He said "No!" I said "Ok, tonight you're the boss..." We went and got a drink, 2 more drinks, 2 more alcoholic drinks (this time it was my round). After 2 more rounds (bearing in mind that when I've had at least two drinks, my ataxia becomes a figment of my imagination, doesn't exist anymore 😂) I attempted to look cool… Anyway my brother then took me for some air again (to the smoking area). On our way back from ‘the smoking area’ my bro gives me two options; to go home and keep to my promise to our mum & his girlfriend or to go n find this girl... Tell me, what would you do?.. Obviously we stayed - looking for this girl, we couldn't find her - literally we looked everywhere, she was nowhere to be seen. My brother had already given up by this point, and although I'm a super-nice guy, I’d like someone too. So I wasn't gonna give up... (my stubbornness does help me, sometimes lol). I went looking for her again, wow! How comes she's right there - in front of me, maybe by this point you could say I had too many drinks! I went to talk to her; she started dancing with me, then she was moving her head/lips really close to mine so I felt the moment was right, I went in for a kiss but she moved her face, so my lips landed on her cheek (AWKWARD OR WHAT!!) she was still dancing, so I decided to show her what I got! Then the killer dance moves came out! You know when you’ve had a few you KNOW you’re the best dancer ever! Well I knew anyway… yup that was me.. It obviously worked, the kissing commenced, but now remember I had a few, this mixed with the ataxia, makes kissing pretty hazardous. My head keeps shaking, as if I was saying no in a vigorous manner. Luckily this girl was persistent or maybe a bit drunk I’m not 100% sure. But she was holding my head (attempting to steady it) but what she didn't know or realise is that anything attempting to halt my ataxia makes it worse, as my ataxia fights back twice as hard so best leave it to me lol. Whilst we were kissing, I now noticed people laughing at us; I'm wasn’t sure if they were laughing at my vigorous head shaking or her trying to steady my head, but either way I didn’t care!! In mid embrace, I feel something pulling at my arm,, it was my brother. I ignored him, then I heard him say ‘let’s get our coats, we got to go’. We got our coats and left. Should I have ignored my brother? Was it cos I've no game?..
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‘dis abledness is craziness n just not me’ that’s just one of my production titles but truthfully, this is how I’m feeling most of my days, because I did not ask to be ‘disabled’ but I have to deal with what I’ve got right! Like when I was at my mums office today, after i came back from Headway, i bought some food to eat, but eating there is always a difficult chore (because of my ataxia). Today I thought ’today I won’t let it beat me, I am not sharing my food with the floor this time’. So I took my mobile hand held blender with me. I bought Chinese with noodles, messy right! No, not once it had gone through the blender. I'd be stretching the truth if I said the floor didn't get a portion of my food, but you'd be please to know that it was a smaller than usual portion, and I'm sure the office cleaners won't be as pi**ed!
I’m not going to lie n make up a story about why I haven’t been keeping this up, although my life is super-crazy & fun, and I am trying to sort my life out and by that I mean getting my holiday video put together, I have so much to say on this but instead of boring you, I’ll let you ask the questions… I wasn’t happy this morning; I do a casting thing every now and again, (it’s extra work for TV & films ) this time it was such a nuisance because they didn't give me the time n location in the email.. really was infuriating.
Eventually I managed to get there, I guess it was just a morning hiccup in the grand scheme of things. In the afternoon, they gave us breakfast for lunch but I wasn't complaining - foods food right! I must admit, today I sat in the corner by myself like a recluse.. this was because every now and then, I do prefer to sit n gather my thoughts. Later I was feeling hungry so I went to get some food. Nobody else was eating because we're not allowed to eat outside of the specified times, but I was super hungry (some would even say I was starving) I went up to where they hand out the food, to my luck an AD (assistant director) was passing by, saw me and said 'what you doing here mate? Aren't you supposed to be in 'crowd holding' with the others...' I said I was hungry and he then said 'it's only cos you're my boy (meaning because I'm his mate)' he went up to the caterer guy, chatted to him for a bit (think I heard him say 'can you rustle up my mate some food') to me now, he said 'sorted, he's gonna take care of you' and the caterer said to me 'sausage n bacon roll ok?' I said, 'y-yeah-yes please'. Two minutes later I was handed a bacon n sausage roll. I was so pleased n thankful. My brother says 'you always seem to get stuff’ See what he doesn’t realise is sometimes my disability helps, as people either feel sorry for me or they’re worried about not helping the “disabled guy”! although I prefer to believe it’s because I’m so good looking…. The beginning of my Barbados holiday started slow and easy as you would expect from a beach holiday (which is a good thing for me, cos as you might imagine anything can happen where I'm concerned). I went to the beach the next morning as I was conked out after all the hassle and complications at the airport.
The sun was amazing after the chill of New York. The sea was a deep blue in the distance and clear blue underfoot, I found myself looking for mermaids and sea creatures. Yeah I know! Calm down, I’m not mad LOL... By the third night, I was fully acclimatized and I made quite a few new friends. Anyway me, my support worker and a few of my new friends got the party started by getting on the dance floor. My jam came on, so I went, pulling out some fresh, unseen ever before moves. Anyway, everyone else left the dance floor - to be honest I liked being ‘the main attraction’ so I took advantage of it, until I saw my mum make a quick exit for some reason; I guess she didn’t like my interpretations/variations of what contemporary movement it was I was conducting. Anyway it was something different (and no, my ataxia does not help me when doing this lol) but I looked good (or so I thought) I ‘thought’ I was the king of the dance floor. The next night, there was a show with limbo dancing. The performer asked for volunteers; yeah you guessed it! I was the first one up. She demonstrated once then pointed to the limbo-bar. The thing with my Ataxia and I is, I don't seem to be able to accept when things are beyond me, but we shouldn't give up right? So I didn’t, but maybe this was one of the times that I should have. I kept going at the bar, even though it was chest high I just couldn't quite get under it, but I couldnt give up either. Everyone was cheering and encouraging me and i could feel the how irritated the performer was because I was taking too long, eventually I went under the bar with my knees hitting the floor. I'm not sure if I was embarrassed or relieved I was just glad it was over. Did I persist because I was too stubborn? Later, I met an older gentleman (I think he told me he was 71) who had similar disabilities to me but caused by different circumstances, we were sitting together and a jam came on, and guess what, so did my moves! I met others, can't give you any names, I may have mentioned that I forget things (due to the brain injury) and due to my brain injury I've forgotten to tell you that the island was having it's 50th anniversary and that I went to the beach everyday. The island holds a special place in my heart; the people are so friendly n polite, Barbados has got to be the best holiday I've been on in a while... Following on from my last post; I got to the hotel in NY, wasn't thrilled by the greeting but one hello's better than no hello at all, right? I guess it didn't help that we got to the hotel after midnight!
The bed though was amazing; I literally melted down into the pillows once I placed my head on them. It was incredible. Next day we ventured up to Central Park, Manhattan, where I beat my walking record (according to my phone app), by walking half of Central Park - even if everyone else says I only walked 200 metres, it felt like a long way to me. The next day was thanksgiving, I don't remember what the Americans are being thankful for on this day, but it’s a good idea and we should all be thankful for something in our lives. My SW did tell me why they have the celebration and the history of it, but I can't remember. I may have mentioned that one of the conditions I now suffer as a result of my TBI (If you cant remember what these abbreviations mean, you'll have to visit my previous posts) is that I forget things. There was also a big parade in Manhattan to celebrate this holiday and I wish I could tell you how good it was, but I was too tired after my long walk in Central Park, so I didn't make it. But I did make it to McDonald's on Fulton St, Brooklyn and the juice was fantastic! That late afternoon/evening was special as I went to celebrate Thanksgiving with my American family. Although there were many who couldn't make it to the thanksgiving dinner, the turnout was good and I met with so many of my family, it was unreal. All in all, about 30 people came which was nice. Everyone was so considerate and pleasant, not everyone had the patience to listen to me, but I understand that. I try to empathise, to see what they see and feel when speaking to someone like me, I don't know! Remember I said I like to 'Big up' myself; well, whilst in America I didn't need to because people who knew how far I'd come (I don't mean travel distance) were praising and commending me on my recovery. I would chat to everyone including cats, dogs and the odd frog, - actually I didn’t talk to any animals, but i would have if there were any around - as I was on cloud 9 most of the time. I met a girl from the UK whilst out shopping. We spent a lot of time talking which was great. She was lovely and had a lot of time for me, this, gave me a boost. You didn't need to know this but, like I said before I like to 'Big up' myself. Next day was awesome, went to the Freedom Tower, this was built in the spot that was previously the twin towers. I found out quite a bit about the grounds surrounding this area but I've forgotten most of it, oops! I guess I could look it up and give you a boring history lesson, but what fun would that be? There's literally never a dull moment with me... Either people are laughing with me (I hope its with me) because I've made a silly mistake or forgotten something, or they're scared because I've unwittingly done or doing something dangerous. As friendly as I know I can be - not everyone likes this - I greeted a girl, who was talking with her friend. She ignored me, as some people do and have every right to do. I guess it was the way she ignored me that upset me. Later I spotted her, I approached her to explain how she made me feel and to ask why she was disrespectful. At that time I had not realised or anticipated that she was with male friends who did not appreciate me approaching her. I realise that I put my SW in an awkward and potentially a dangerous position. Did I feel slighted because I think my disability gives me the right to talk to everyone or is it because I am too sensitive? I know that sometimes my judgment is flawed - this is everyone right? - But most of the time this is not the case. Anyway, I done some soul searching and came back to the fact that I had not stuck with the change I had set out for myself in my previous post, which was to avoid alcohol when I go out. Let's see how I get on with this going forward...... Today I feel so great, I'm going on holiday; New York then Barbados. So on route to the airport - I rode shotgun, as you do when you are the last one to the car!
I think I'm a nice person (most of the time) and I think being nice will always put me on top. I decided, therefore that I was going to have a great holiday and treat everyone how I would like to be treated. I find that people are nice if they're treated in a nice way, so I made a point of always being nice and polite to everyone.. (this includes body language, facial expressions, the tone of voice, everything in order to be perceived in a positive way) so forget the nonsense that the world's not a nice place.. it is what we make it. The way to see change, if we want to see change, is to start change at home first. Change something, change anything in your lifestyle for the better (only if it suits you though) and you will see change (it may be small but we all have to start somewhere). As you can imagine, going through customs is never easy for me. My ataxia means I shake, even more when i'm under pressure to do things quickly. I tried to be the nicest person imaginable, because my ataxia means I attract more attention and I always get searched n swabbed for drugs, I guess because shaking could also be a sympton displayed by an addict? Anyways I always kept to my please n thank you rule, and before I knew it three border control officers were tending to me; I'm not sure if they thought my shaking was me coming down off some illegal substance or nervous anxiety, anyway whatever it was, it meant I attracted extra attention. I had my boarding pass in my hand when I was asked to raise my arms for a body search, I was totally unaware that I was flapping the card around as though I was swatting a fly. I looked over at my mother and saw horror on her face, I was still oblivious as to why she had that look on her face until she told me I was waving the card around like my life depended on it. She said it was a good job I was searched before she put all that rum punch in my bag! I said being stopped was just another opportunity for us to meet and talk to another person and make their day better. Anyway, I like to believe my attitude helped me through customs, who knows! Even though they made me remove my shoes and belt, they were patient with me and one of the border control officers even helped me to put my belt back on. Great customer service or was it because I was a nice person? Oh! I nearly forgot, I said we should try to change one thing to make life better. I'm going to try not to drink alcohol when I go out. I'm not a drunk-head or anything but as you may well know, alcohol slurs your speech, affects your judgement and balance so I'm already halfway there without having a drink! Ok, I’ve just come back from the cinema, saw Dr Strange, it was a really good film. I went with a support worker (SW) - did I mention that I have great support workers that hang out with me (5 days a week) and help me with everyday tasks? I may have mentioned that my voice isn't great so when we go out, we have this understanding, that they must not speak for me unless I ask them to.
What made me feel so great about the film was the fact that I went into the screen area on a high; whilst I was ordering the tickets, the sales assistant taking my order gave me her full attention, eye contact, everything, even when she heard my messed up voice she kept eye contact with me. Normally, this is the time they look to my companion for reassurance, help or just rescuing... anyway she didn't do any of that, which was brilliant, she treated me like anyone else. I was so pleased and boosted by this I wanted to continue this 'normal' situation... I bought a drink and some popcorn, my support worker usually carry these for me, as I have ataxia – which means I have a lack of coordination which causes extreme shaking. But I wanted to carry these myself, I’m not sure what caused this need or urge to carry these, but I guess I was on a high and I wanted her to see that I was still ‘cool’ or something like that. I need to tell you, I can’t carry a drink any distance, if I attempt this everyone around me gives me a very wide berth for fear of having a coke shower. I ordered- looked at the popcorn - looked at her - smiled.. looked down at the popcorn again, then I attempted to pick up the popcorn by hugging it close to my chest, wedged under my chin, I started to shake. My SW saw my predicament, swooped in, picked up the coke and took the popcorn from me; normally I would be upset with my SW, but this time I was grateful. I guess I should have realised the potential embarrassment wasn’t worth the risk. Instead, I walked in with my head held high and a smile on my face... I wonder, am I just easy to please? Just come back from the gym... I really hate it when my mum tells me I'm 'too friendly', But maybe she’s right!
We went to our gym which also doubles up as a spa. I got into the jacuzzi and started a conversation with a guy, in my slightly louder than normal voice. Did I mention that I have dysphasia, I looked this up and it is described as a speech disorder. How this affects me is that my voice has a nasal sound, slightly slurred but quite loud - I always forget this when speaking with strangers. Anyway I continued to have a conversation with this guy, or maybe I had a conversation at him, I’m not a 100% sure, anyway I told him about what I do in the gym and asked what he likes to do. He was quite polite and friendly, he said that he mainly skips and sometimes uses the treadmill, I asked if he ever uses the weights, he said no, I continued to prattle on for a few more minutes. When I was finished in the jacuzzi, I stood to get out, I bid him farewell but forgot to ask him his name so I asked, in a voice louder than a half-naked guy would feel comfortable being asked by another half-naked guy. Loud enough for anyone in the carpark to hear - according to my mum; she's prone to exaggeration. He looked a little nervous, but he told me his name – I can’t remember it now, as I have the short term memory of a Hamster. It only occurred to me after my mum mentioned that maybe he thought I was ‘chatting him up’. I’m not gay and I don’t think he was either but I laughed because my brother says the same thing when I talk to girls, old ladies, old men, anyone… oh well! Anyhow, I find that most people are happy to talk to me, I wonder if it’s because I'm too friendly or because I'm disabled? |
AuthorHi I'm Lee, my mum encouraged me to write a blog about my experiences as a disabled young man and to be honest, I wasn't quite sold on the idea but thought it might help other disabled people and particularly able bodied people to see things from a different perspective. Ok, let me start at the beginning; my disability was acquired after I was involved in a hit and run accident over 10 years ago. I suffered a TBI (for those who don't know - Traumatic Brain Injury). Categories |
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