Moving Forward

I think I’m going to stop promising to ‘write soon’ at the end of each of my posts as I’m not sure that 5 months later falls into anyone’s definition of soon, but on the bright side, I now have nearly half a year’s worth of adventures to catch you up on.

Firstly, I am officially one year older. Being 17 for me means much more than being ever closer to the legal drinking age (although this is certainly something to celebrate) as this seems to be the age when everything in my life begins to change. Basically, I’m becoming an adult, and with that comes many new challenges.

The first big change I expected to hit me this year was the opportunity to begin learning to drive. Despite being able to apply for my provisional license aged just 16 (disability perks), it took about a year for all my paperwork to be processed and my name to arrive at the top of the list for an adapted vehicle assessment. When my turn finally came, I was extremely excited to find out what the options were, but also understandably quite apprehensive – I cause enough chaos in the college corridors, nevermind on the M6! I know of quite a number of others with SMA who drive their own cars, so I was very interested to find out how they managed, but it my case, it appears the processes would not be quite so straightforward. According to my diagnosis, I have ‘the strength of a newborn baby’, therefore finding a control that I could actually operate presented us with a number of difficulties. The control used to drive my power chair requires such a light touch that one bump in the road would send me careering off course if something similar were to be used in a car, so that was obviously out of the question. As it turns out, with technology at the stage it is, it’s impossible to find a control which is both safe for road use and sensitive enough to be operated with my minimal strength, so for now, driving is out for me. Having said this, I’m pretty sure some technical whizz somewhere in this world is inventing some fancy way of driving cars using smartphones or something, so I’m almost certain I’ll be behind the wheel some day – quitting is not in my vocabulary.

To be absolutely honest, looking at the timeline of how long it was going to take for me to go from my initial assessment to actually taking my test, it was clear that the timing wasn’t the best. The whole process could have taken up to two years, by which point I will hopefully be away at university. Speaking of which….

Much of my time over the past few months has been spent preparing for my application to study in the US. After hearing the most amazing news that I had been successful in receiving a place of the Sutton Trust US Programme (http://www.fulbright.org.uk/news/sutton-trust-us-programme-2017-cohort-announced), the real work truly began. Briefly, the programme’s aim is to encourage and support ‘academically talented, low and middle-income British students to consider studying at American universities’, and being a part of this has been one of my goals from the very beginning of my American dream. Amongst other things, the programme involves intense admissions test coaching, application advice and a week-long trip to the US staying in a top university – basically, this. Is. HUGE.

 

I’m now in contact with the programme organisers who are busy preparing for both the US residential and a residential in London this coming June, and I can honestly say they are doing their utmost to make sure that everything is in place for my extra needs. For the US week, I will be staying at Yale University (again, HUGE) and will be visiting the likes of Harvard and receiving valuable admissions lectures throughout my time in the States.

As a part of the planning process for the trips, I was asked to make a list of all the things I may need help with during the residential so they can get a vague idea of my additional needs, and in doing so, I realised just how far I have come in the past couple of years. My independence once I’m up and about is greater than I ever expected and my confidence to ask for the few things that I do need a hand with has rocketed. This time, my Mum will be accompanying me to the US assist with personal care etc. – something she’s terribly upset about! – but if (when) I go to the States to study next year, I plan to fly solo… or at least, with a team of PAs that doesn’t include my Mum! Ultimately, this would be the case whether I went to study in Leeds or Los Angeles, but there’s just the small matter of the
Atlantic Ocean between us…

Following the US Summer School, I, along with 149 other students, will return to the UK to really begin my application to American colleges, and that is honestly one of the most exciting things I have ever written.  The programme coordinators will assist with everything from navigating the lengthy application process to securing sufficient financial aid/scholarships and this invaluable support will be key to making this American Dream a reality.

Anyway, back to the magic number 17. Since, in the eyes of the health services, I am now basically an adult, all of my care is being handed over to the adult teams, so consequently, I’m reaching that point where I’m saying goodbye to many of those who’ve cared for me over the past 17 years. It’s a kind of mixed feeling as, although it is said to leave behind familiar faces, I’m moving on to my next chapter and I’m more than ready to take it on. I recently had a sleep study on the children’s ward at the Royal Stoke hospital and I felt like a literal OAP compared to the tiny kiddies around me, so yeah, I think it’s time.

Moving away from hospitals and on to Dominican paradise – sound okay? Hell yes. Travel is the most magical thing and to have the opportunity to experience it is an absolute privilege, therefore my family’s trip to the Dominican Republic this April was truly a two-week period to remember. Sunshine? Check. White sand? Check. Turquoise sea? Check. Palm trees? Check. Hot guys? Double check. Seriously, this place is a tropical paradise and I could not ask for more.

Actually getting there comes with its fair share of dramas, ranging from lost powered wheelchairs to inaccessible taxis, but believe, it is worth every second. As I’ve said before, despite the risk, travelling without my electric chair simply is not an option, much like spending two weeks with your ankles tied together wouldn’t exactly be feasible. I take my manual chair to use around the airport (while my electric chair is wrapped up) and on the beach, but this in no way would serve as an adequate replacement – for one thing, how would I reach the bar?

 

The two weeks were spent with sunshine, smiles and strawberry daiquiris coupled with the making of some really great friends. The staff at the resort and the Dominican people in general would have to be up there with some of the nicest people I have ever had the pleasure of meeting, the most wonderful thing being that, when it comes to disability, they see no barrier. I spend much of my life encased in some sort of invisible bubble with many fearing I will break if they so much as approach, yet here, that bubble is nowhere to be seen and instead I am immersed and engaged in all that the holiday has to offer. Pool parties? Beach parties? Clubbing? Justin Bieber concert? You name it; we probably did it.

Hold on a second… Justin Bieber? In Punta Cana? Yes, you heard right – the man himself was set to perform just three hotels along the beach from us at the exact time we were there! To me, this was fate. I could take this as an opportunity to express my absolute adoration of Justin Bieber to the world, but all you really need to know is that I’m a bit of a fan, so with that in mind, I booked tickets for my Mum and I to attend his show at the Hard Rock Hotel, Punta Cana.

We managed to eventually source a wheelchair accessible taxi to take us to the venue and, to our complete surprise, we made it with no glitches. Our seats for the concert were OUT OF THIS WORLD (i.e. front row) and the show was absolutely incredible. It was an open air concert in the Caribbean – how could we possibly go wrong?

But then the fun started. The taxi we had booked to travel back to our hotel was waiting for us at the exit and so we hopped in, feeling so pleased with ourselves that everything had gone to plan. As we crawled through the crowds in our minibus-style taxi with fans banging on the windows obviously thinking we were Justin Bieber (understandable mistake), my Mum and I realised that the taxi was slowly grinding to a halt – and then it broke down completely. Unfortunately, by this point, we had made it out of the complex and were sitting in our taxi in the pitch black on some dirt track somewhere between the concert and our hotel.

It’s difficult for me to sum up just how bizarre this whole experience was, but picture this: we’re sat in a taxi (which won’t move) in the middle of the island with nobody in sight and no phone signal to get help. Eventually, the driver managed to get hold of a second taxi to collect us, the only issue being that this alternative mode of transport could not carry my chair. When it eventually arrived, I was lifted out of my chair and into the new taxi under the impression that my chair was going to be towed
in the taxi behind us. This turned out not to be the case, which we realised at we drove away into the distance, leaving my chair on the side of the road in the middle of the island with the second driver.

As we pulled up to the entrance of our hotel, my sister, a number of tequila shots down the line by this point, came to the rescue along with the most muscley member of staff she could find, who carried me in his arms all the way from the taxi to a seat in the lobby. Here we waited for over an hour with no idea whether I would ever see my beautiful chair again and, if I did, what state it would be in. After an agonising wait – made slightly less painful by the presence of the muscley guy – my chair appeared in the back of yet another taxi, and that truly was one of the happiest moments of my life.

For me, the whole experience added to how fantastic the concert had been and, I’m not gonna’ lie, it provides some great blog content! It was also a harsh reminder of just how much I value my chair for all aspects of my life, and every day I’m thankful for everything that it enables me to achieve.

Unfortunately, my return to the UK was greeted with a huge pile of revision in preparation for my AS Level exams, but luckily, motivation is not too difficult to come by with thoughts of my LA goal swirling around my head. Speaking of swirling heads, what would exam season be without a little episode of vertigo? For those who’ve read my blog before, you may remember I suffer from some undiagnosed form of vertigo which makes an appearance every few months, often around times of particularly important events (like an exam). The symptoms of these episodes are very much along the lines of a migraine, knocking me out of the game for a minimum of 24 hours. It’s difficult to describe to someone who’s never experienced it, but the closest comparison I can probably make is to say  it’s a lot like being trapped on the waltzers with no hope of escape. Yes, gross. But hey, it happens, and as I get older, I’m finding new ways to cope and prepare myself when a ‘vertigo attack’ is looming.

Anyway, the point of this story was not to have a moan about this extremely unpleasant, yet frankly, manageable experience of mine, but rather to note how fantastic my college was in managing my absence from lessons. With technology at its current stage, it’s so easy to stay in touch with my teachers and collect various pieces of work to complete when I’ve disembarked the rollercoaster and firmly within the ‘hangover period’, and they’d even put in a plan to allow me to take my exam at home with an invigilator if I wasn’t able to make it in on the day! Thankfully, the vertigo passed and I was able to go back to college and complete my first exam with no issues – fingers crossed for Results Day!

The next item on my list was to write about my trip to the Ariana Grande concert in Birmingham last Thursday, but since beginning to write this post, our world has been hit by the most horrific attack. I feel it highly inappropriate to both ignore my time at the concert or to not give all those affected by Monday’s events the correct acknowledgment and respect, therefore all I will say is that for my PA and I, a fantastic time was had in Birmingham, but I am so acutely aware that, for those attending the Ariana Grande tour in Manchester, the scars left by the horrors of that night will never be truly healed. For myself and thousands of others around the world, music provides an escape to a land of peace, happiness and harmony, yet Monday night’s act of brutality saw the complete reversal of this very notion. There are no words to describe the pain felt in the hearts of our nation, but this agonising grief has united our world as a whole, combining our strength and driving us ever closer to peace.

Take care of each other and spread love.

Tilly,xoxox

Twitter/Insta: @ItsMeTillyG

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