So far, 2018 has been a whirlwind of a year with everything from exam preparation to turning 18 and getting ready for life as an independent woman, but there was one envelope that came through the letterbox recently that quite literally changed my life.
I am so thrilled to tell you all that I have been offered a place at Stanford University in California!!! It honestly feels as if the last six years of my life have been building up to this moment and I am so truly thankful for all the support that has helped me reach this unbelievably amazing point. There's still a lot of work to be done in terms of making practical arrangements relating to life as a student with a physical disability, but I can't put into words how excited I am to embark on this new journey and bring you all along with me.
Thank you so much for your continued support and I look forward to writing soon!
I know, I know... I say it all the time - "Write soon!" Well, this time I mean it. 2018 promises to be one of the most jam-packed, life-altering years of my life and I look forward to bringing you all along on my unbelievably exciting journey. Before I delve too much into what's in store over the next year, I'd like to fill in the gaps and give you a brief run-down of what's been happening chez Tilly over the past few months...
Upon my return from a week in the States in August, a great loss swept through the nation following the news of Sir Bruce Forsyth's passing. A wonderful man and legendary entertainer, Sir Bruce touched the lives of millions across the globe, but for the Griffiths family, he held a very special place in our hearts. Back in 2008, I received the great honour of being awarded a Pride of Britain award as a Child of Courage, and who better to present this to me than the-one-and-only Sir Bruce Forsyth? Alongside Tess Daly, Sir Bruce surprised me on the evening with not only the award, but also a tap dance on stage just for me! Having spent years watching him as the star of the Strictly Come Dancing ballroom, in our family Sir Bruce represented all things sparkle and show biz, and for that alone we are eternally grateful.
But oh no, it didn't end there. Following the Pride of Britain Awards, Bruce became an ambassador for Caudwell Children and worked tirelessly to promote and support the aims of the charity. In addition to attending the annual Butterfly Ball alongside his wife, Winnie, he took time to truly connect with the charity in a way that only Bruce could. It was so wonderful to stay in touch with both Bruce and Winnie over the years and each time we met, he always glowed with that Brucie sparkle.
It is for all these reasons that, upon being asked to speak about Sir Bruce on BBC Breakfast alongside Caudwell Children Chief Executive, Trudi Beswick, I felt so truly privileged - what greater honour can there be than to have the opportunity to pay even a small tribute to such an extraordinary man?
Sir Bruce Forsyth will be sadly missed, but will remain forever in our hearts.
Continuing with the theme of glitz and glamour, what better way to kick off my final year of Sixth Form College than to head over to Cheshire for Dawn and Ashley Ward's glittering Crème de la Crème Ball. This event never fails to provide fabulous entertainment, a whole host of celebrities and an evening of pure sparkle, but most of all, all proceeds from the night go straight to Caudwell Children. Again having the honour of giving a speech about the journey that my powered wheelchair has taken me on, I had the opportunity to really reflect on how far I've come thanks to this magical machine and to look forward to my next, very exciting chapter across the pond.
The next few months were filled to the brim with university applications and college work as I build up to the end of my time at Sixth Form College. I could not be more thankful for the support I have received during my time here and can honestly say that my dreams of studying in the US would not be coming true if it were not for there determination and unwavering belief in me. I'm getting closer to California with each step and will be posting my news in the very near future!
Between trips to London for US university fairs and the mountains of college work I have been wading through, it has been a pleasure to again be part of Sanja's Hollywood and Bollywood. A fusion of Hollywood glamour and Bollywood pizazz, the ball welcomed a range of top-class entertainers and a feast of authentic cuisine that wowed the guests in the stunning setting of Keele Hall. For its 10th anniversary, Pritpal and Ruby, the founders of Sanja, decided to return to three charities that previously benefited from the ball - Rudyard Sailability, Douglas MacMillan and MASE. As representatives of Rudyard Sailabily, my Mum, my Nana and myself attended a number of meetings leading up to the ball and, for the first time, I got to see how such a fabulous event is put together. Playing a part in the organisation of the Hollywood and Bollywood Ball made our experiences on the night all the more valuable and, thanks to the hard work and dedication of Pritpal and Ruby, an astonishing amount was raised for the three deserving charities.
As we approached Christmas, our festive celebrations took an unexpected path with the loss of my beautiful Nana on the first day of advent. After moving in with us just over two years ago, Nana embraced all that life in the Griffiths household had to offer, and even in her final week, was out on the dancefloor being the belle of the Sanja Ball. Nana featured heavily in my life from the moment I was born and continues to inspire me today with her positive outlook and zest for life. Thank you Nana for all the wonderful memories to cherish forever and for inspiring me to always reach for the stars.
As we now wave goodbye to the festivites for another year, I can't help but look forward with great excitement to the year ahead. Undoubtedly, 2018 will be a year of monumental change and I look forward to navigating this with you all by my side.
And we've landed! After what has been one of the most mind-blowing, jam-packed weeks of my entire life, I'm now slowly coming back down to Earth and getting set for what promises to be an extremely busy and exciting few months. Before launching into the US week itself and all our adventures along the way, I'd first like to take you back a couple of months to when the planning of the out-of-this-world trip began...
From my previous blogs, you may be aware that going away from home for me means a great deal more than packing a few summer outfits into a suitcase - this is still the most important part, of course, but there's a little more to it in my case (pun intended). Since this entire trip was planned by the amazing Sutton Trust US Programme, it was strange at first to relinquish control of the military-style planning of such an adventure, but I soon realised there would still be plenty for me to organise in the end!
Despite having flown on a number of occasions over the years with various airlines, due to the precision of Virgin Atlantic's health checks, this presented more of an issue than it ever has before and, to begin, I was required to pass a Fit-to-Fly Test to see whether I would require oxygen while on-board the aircraft. This involved me wearing a tight-fitting mask which lowered the oxygen levels of the air I was breathing in to that found in an aeroplane cabin, and throughout this, a series of blood samples were taken from my ear lobe to test my body's reaction to this. Thankfully, my results did not drop below the magic number and I was cleared to fly with no additional oxygen necessary. Phew. But oh no, the fun wasn't over just yet. Before I continue, I'd just like to clarify that I one hundred percent appreciate all that airlines do to keep passengers such as myself safe and well, and all I intend to do here is paint a picture of the extra stuff that goes on behind the scenes when travelling as a full-time wheelchair user. For those who don't know, I use a non-invasive ventilator each night to support my breathing and have done this since the age of three. This ventilation in entirely therapeutic, but has been key to me growing into the healthy young person I am today. I never plan to use my machines on-board the aircraft, but when it came to a discussion with Virgin regarding my ventilator, things began to get complicated. The machine itself has something like two hours' battery life, which would most likely be enough for me for a seven-hour flight, but no, not for Virgin Atlantic. Ignoring the fact that I am probably the best at assessing my own health and bearing in mind that we are now days away from the flight, we were instructed by the airline to source an external ventilator battery. With the help of the hospital and my new respiratory consultant, we were able to do this, but only just. We now have ten hours of battery life for my ventilator.
Feeling rather too proud of ourselves for having pulled this off, we emailed to confirm we were all set for the flight, to which the airline replied: "Unfortunately as the specifications say that the power station you’ve been given plus the internal battery of the ventilator only provides 10 hours’ worth of battery life, we would require you to have 10.5 hours' worth of battery life". Are you kidding me?! After a few polite and professional emails back and forth, it was decided that the extra 30 minutes would not be necessary, but it just serves as an example of the extra hurdles that must be jumped in order to get through day-to-day life - completely do-able, but a little extra time and patience is key.
And finally we're off! Having booked a night near to the terminal at Heathrow in order to limit the already astronomical pressure which builds on the morning of a flight, we were in position on the morning of Sunday 30th, feeling bright and breezy, and ready for take-off. Well, nearly...Mum and I made our way across the concourse with four suitcases and a manual wheelchair to push along (I made that sound way more graceful than it actually was), and proceed to the check-in desk where we spent one whole hour going over everything that we had already discussed prior to our flight - standard procedure.
Since security also takes a little longer due to my extensive medical equipment carried in hand luggage, we arrived in the departure lounge and headed almost straight to the gate with only a brief pause to have a squirt of the latest Eau de Parfum from Yves Saint Laurent in the duty-free. We do this so that we have plenty of time to prepare my chair for travel, as, for a staggering cost of £20,000, my chair is certainly not something that I wish to see damaged in transit. Having time at the gate allows us to stow away the delicate controls within the body of the chair and ensure that anything at risk remains tightly tucked away whilst in the hold. My hope is that there will one day be a more efficient method for transporting such vital pieces of equipment overseas, but until then, cling-film and crossed fingers it is.
After transferring to my manual chair in order to arrive at the plane door, I'm lifted again into an even smaller chair, known by the in-crowd as the aisle chair, which - you guessed it - fits along the plane aisle. Finally, I'm lifted into my seat, which is where I remain with the support of the innards of my manual chair's seating system for the duration of the flight.Fast-forward seven hours......Upon arrival at JFK, the operation to board the plane took place in reverse and, after rebuilding both myself and my chair (which made it in one piece!) in the baggage hall, we boarded the coach and headed to Yale University, our residence for the next week.
I could write a novel, never mind a blog post, about just how absolutely amazing our time in the US visiting campuses and experiencing university life was, but in order to stick with the purpose of my blog and to complete this post before I'm 25, I'm going to focus in primarily on how I navigated such a whirlwind of a week as a full-time electric wheelchair user. With a 04:00 wake-up call on day one and a packed breakfast in hand, I, along with 59 other students interested in US study, prepared to board the coach to Harvard University. Not so fast. To board said coach, I drive onto a high-lift and rise up onto the coach, but in order for this to work, the lift must actually be working. Obstacle number-one: it wasn't. In life, you can either get extremely angry and stressed out that life never goes your way, or.... you can take a deep breathe, smile and figure out an alternative plan. I always try to select the latter.
In this case, the alternative plan was to wave goodbye to the rest of the students on the coach, then travel by train with Mum to meet back up with them at Harvard. A passing Yale students arranged for the accessible university shuttle to take us to the station, where we picked up our tickets from the most vintage, stereotypical ticket office and boarded the train from New Haven, CT to Boston, MA. This turned out to be one of my personal highlights of the trip, as the track hugged the East Coast and laid on stunning views of all the natural wonders that New England has to offer.
The next job was to hop in a taxi over to Harvard, except accessible taxis in Boston apparently aren't really a thing without twenty-four hours' notice. There is no phrase more true than Every cloud has a silver lining, and in this case, that silver lining was the opportunity to experience the Boston T-Line. As a person with a strong dislike of the London Underground, explained in my previous post, I had my reservations about attempting the Boston equivalent, but with no alternative and the help of a very kind staff member escorting us through the tunnels, the T-Line proved to be one of the best decisions and shot straight to the top of my list of things I love about Boston.
Undeniably, Harvard University is an astonishingly beautiful campus where students have world-class resources at their fingertips. Like the majority of the prospective student population, I could most certainly envisage myself spending four years at such a place, but there's a catch - for so many months of the year, I would be housebound due to snow. I know it's difficult to believe looking at these photographs and talking about weather during a university search sounds somewhat shallow, but in my case, this is real-life stuff. The reality of extreme cold and snow would isolate me from my peers for the majority of the school year and render me unable to make the most of being in such a fantastic location. So instead, the West Coast is where I'm headed.
Thankfully, for the following day, we were to remain on the Yale campus in New Haven, experiencing admissions masterclasses and life as a 'Yalie', so no coach journey was necessary. We dined in the grand dining hall of Hopper College and toured Yale's main buildings, including the Sterling Memorial Library, and were all in awe of what an American university education has to offer.
Now, this all sounds pretty perfect, and believe me, it was, but there's always that one small thing that keeps your feet firmly settled on the ground. On this occasion, it was a crack in the wire which controls the core functions of my chair. It was late at night and I had made that fatal mistake of declaring to Mum that it wouldn't be long before we'd be tucked up in bed, when suddenly - nothing. Try turning the chair off then on again, that usually works. Nope. As a student who excels much more in the humanities than in the STEM fields, chair maintenance is certainly not my strong suit, but desperate times call for desperate measures. Together with my Mum, after around an hour of detective work, we managed to locate the faulty wire and, following a phone call with my Dad across the Atlantic, we found a temporary solution of switching the wires in order to last until he could fix the problem permanently at home. It is inevitable in life that things like this will occur, but as I move towards leading a more independent life, I am slowly finding ways to manage these everyday, minor, yet incredibly major, crises.
Throughout the week, we visited a variety of other universities, ranging from small women's colleges like Smith College to big-name universities like Columbia in NYC. Despite the East Coast not being the place for me due to the entirely impractical weather for a large portion of the time, it was a great learning experience to figure out what worked for me and what didn't across a number of different institutions. Things like uneven pavements due to extreme weather cause unnecessary delays and discomfort to someone travelling on four wheels, but this is something that can only be found out by visiting campuses in person.
In addition to the epic university search, the Sutton Trust US Programme laid on a number of cultural activities, including a visit to a typical American mall; lunch in Central Park; a visit to the Metropolitan Museum of Art; and a trip to the Top of the Rock. Driving through New York City for the first time is a pretty magical experience as it is, but with the added ambiance of Alicia Keys blasting out of the coach speakers, it was almost enough to bring a twinkle of a tear to the eye.
The Rockefeller Center had an almost Disney feel to it, with all staff greeting you with warm smiles and friendly conversation, and this positive attitude definitely came in handy when it came to me needing to use the bathroom.What would be your initial instinct when you decide that it's that time? Follow the signs to the ladies', right? And that's exactly what we did. Except, after navigating our way through the labyrinth that is the Rockefeller Center food court and arriving at said ladies', we were greeted by a flight of stairs. Oops. Luckily for us, there was a little sign pointing us in the opposite direction to the 'Handicapped Restroom', however, we later found out that this was located about three blocks over. Since we were traveling with a large group of students, we were under pretty tight time constraints, so making it there and back in time for our trip to the Top of the Rock was just never going to happen. In the end, we found an extremely kind security guard who escorted me and Mum to a private bathroom beyond the security station. As I've said before, it only takes one kind-hearted stranger to transform a day from one of stress to one of nothing but joy.
The views from the Top of the Rock were breath-taking, providing the perfect backdrop for my next artsy Instagram post. But seriously, it was impossible not to feel inspired by the city rolled out before us, and the setting sun set the tone beautifully for such a wonderful evening. I also felt that this was the point during the trip at which our group as a whole truly came together. With the Sutton Trust US Programme and my fellow #YellowBackpacks, I have found a group of young people who share my passions and ambitions, and with this comes a strong sense of companionship and belonging. Throughout the week, we laughed, we learnt, we sang and we cried, and I'm sure I'm not alone in my belief that I now feel all the more ready to take on the exciting challenges that the US admissions process will no doubt bring over the next few months. Thank you Sutton Trusters!
It's the summer holidays! One of the major perks of attending college is the fact that term ends two weeks before the local high schools, so I now have a whole eight weeks ahead to spend making preparations for the coming year, catching up on work and treating myself to a spot of relaxation - but not too much of course.
My last post ended at a very tragic time following the horrific Manchester bombing, and the horrors of that night will remain with us long after the headlines disappear. Once I heard that Ariana Grande was returning to Manchester with the One Love concert for the victims of the attack, as a music lover and friend of a number of those affected, I felt it right that I attend the event out of respect, love and defiance.
We managed to find the most perfect parking space within Old Trafford Cricket Ground and were just about to congratulate ourselves on a job-well-done when I felt something give way under my front wheel. The wire controlling my arm supports had snapped in two. On any day, this would be a total nightmare, but at a concert where I intend to throw my arms in the air and am instead confined to having my hands resting conservatively on my lap, this had the potential to put a pretty big dampener on the day. If it wasn't for the BBC, it could well have done. Our perfect parking space turned out to be worth more than we could have imagined since it happened to be next to the BBC Radio technical van which was setting up to record the concert. After numerous attempts to piece together what was left of the wire with an old plaster found at the bottom of a handbag, my mum, being the wonderful woman that she is, decided we had nothing to lose and asked the BBC guys if they had five minutes to spare to kindly have a go at fixing it. In the midst of such terrible events filling our news, it's reassuring to find people whose kind hearts and generosity mean that they are genuinely happy to help. They spent a good while soldering and whatever other technical things it took to get the button fixed, and after thanking them greatly, I came away with fully-functioning arm supports and a restored faith in humanity.
As we queued to enter the stadium, we were constantly reminded of the real reason thousands of people were gathered in Manchester that afternoon, and it was difficult to tell whether the astonishing presence of armed forces and circling helicopters was calmly reassuring or absolutely terrifying. We met a handful of those who in the foyer when the bomb went off and I still don't know how they found the courage to attend One Love Manchester so shortly after the attack. These people were the real reason we were there.
After spending a few minutes up on the wheelchair platform which was located at the back of the stadium, directly behind the sound and lighting tower, I decided that I wanted to see more than just the screens. I've explained before about the lack of atmosphere up on these platforms, and at this particular event, this couldn't have been more true. Usually, you at least have an uninterrupted view, but there wasn't even that! The atmosphere down in the crowd was incredible and that's where we spent the rest of the concert - the view may not have been crystal clear and I may have been bumped once or twice by fellow concertgoers, but, on this occasion, it was more about what we could feel. The love and solidarity within the arena were tangible and this is something I wanted to be a part of.
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Rewinding a little, I'd like to tell you about the first of three recent trips to London: Caudwell Children's Butterfly Ball. Having not made it to the Ball last year due to exam pressures, it was all the more exciting to arrive into Euston this May to prepare for the sparkling evening ahead. We often stay at the Premier Inn just along from the station, simply because it's less far for my mum to drag our many bags and suitcases, and on this occasion, we were able to meet up with my sister, Candice, as she had a few hours to spare following her university exams. I could go into great detail about my pre-ball hair and makeup routine (don't worry, I'll refrain from this for now), but instead, I'll say that five hours later, we hopped into the wheelchair accessible Addison Lee taxi and headed over to the Grosvenor House Hotel.
It's difficult to describe the feeling of pulling up to a 'purple carpet' and being greeted by flashing cameras and hoards of paparazzi pointing their lenses in all directions, including at you - one fitting adjective would definitely be surreal, but magical works pretty well too. As well as trying to maintain my most dazzling smile and keep the stray pieces of hair from sticking to my lip gloss, I had to concentrate so hard on not letting my head fall. Since the muscles in my neck are equally as weak as those everywhere else, my head has a tendency to fall forwards and give the impression that I've either fallen asleep without warning or suddenly passed out (neither of these is the case). Once my head is down, it's difficult for me to communicate what's going on as my jaw is trapped against my chest, so on the whole, it's not the most attractive position to find myself in and it's certainly not something I'd want to be caught on camera. All it's takes it a helping hand on my forehead to return me to the upright position, but without having a sticker on my forehead to explain this, it's difficult for others to know how to help.
After finishing off the exquisite dinner and looking on in admiration as more and more stunning ball gowns entered the room, it was time for me, along with a handful of other recipients of powered wheelchairs, to say a few words on stage. I'm often asked if I get nervous before speaking in front of so many people and, despite having done this numerous times before, the answer is always yes. I wouldn't describe myself as an anxious person and I often don't worry out things until seconds before they actually take place, simply because I just don't see the point, but I feel honoured to be asked to speak at such events and want to be sure to do a good job. I don't worry about messing up my words as much as I do getting my arm support caught or, again, my head falling, as this is just all-round embarrassing, and I try not to pre-write any of my speeches anyway so that what I say on the night truly comes from the heart.
A particular highlight from this year's ball, for me, has to be the one-and-only Craig David. I mean, I knew he was good, but... wow. Aside from his immense musical talent, Craig David is one of the nicest pop stars about and took the time to speak with each of the families attending the ball. His set was amazing and, once again, he proved that his music is truly timeless.
Lovely to meet you Tilly. Your energy was amazing👏🏽😌🎤 And that dress! Wow🙌🏽✨ https://t.co/5Vl71uLj3v
The Butterfly Ball was a great success for Caudwell Children and I can't thank them enough for inviting myself, Mum and Candice to be a part of their fabulous evening. I truly value the work that this charity does for children with disabilities and their families and cannot express how grateful I am for both the practical support with the donation of my chair and the enriching experiences I have been given as a result.
If you've read my blog or even spoken to me within the last year, you're probably aware that I'm planning to study in the US as of September 2018 and, if not, you are now. Where I left off in my last post, the next stage on my 'journey' to the US was to attend a Sutton Trust US Programme residential in London. For this, I was unbelievably excited with a small spot of abject terror. For so long, I have been alone in my ambition to study across the Atlantic, and this residential was my opportunity to finally meet others on the same path who share my dream.
Mum and I weren't able to stay in the same hotel as the other students due to wheelchair access issues, but the itinerary for the weekend was so jam-packed that this made very little difference. Each morning, we made the walk from Euston to Syracuse University where we were greeted by a hub of excitement and US-related activity. Mum left to explore the city for the day with Candice, who had managed to squeeze in yet another trip to London, and I remained at the university to learn all I could about study in the US. Workshops ranged from ACT preparation to admissions essay tips and I couldn't believe I had finally landed where I needed to be to make my American dream a reality.
In just over a week, I leave with my mum for the US to spend a week at Yale University along with 59 other Sutton Trust students, with trips including Harvard University and New York City, and I honestly can't wait to experience true campus life and blog about my adventures upon my return.
But before we get there...
For my seventeenth birthday, I asked for Justin Bieber. Unsurprisingly, I did not wake up to find him on my doorstep, but I suppose I did get the next best thing.
We left for Stoke Station early Sunday morning and took the train with ease to Euston. Some people get pretty stressed out about train travel with a wheelchair user, but as long as the station is aware to fetch the ramps when the time comes (which they manage 99.9% of the time - but that's another story), all is well. I only felt slightly ridiculous in my Hunter wellies and festival face glitter strolling through the streets of London, but really, it made a refreshing change for people to be looking inquisitively at my face rather than at my zebra-striped chair.
Having made it to the Premier Inn in Euston (where we're now on first-name terms with the staff after so many recent visits) and had no luck in booking a taxi over to Hyde Park, we hopped on the bus and, for £1.50, made it to the concert in no time at all. Unless we're desperate, the tube for me is a relatively big no-no as, for one thing, many of the stations don't have lifts to exit, and I'm not particularly fond of travelling sideways in a black cab either. The bus is such an easy and affordable way to get about London - the driver simply releases the ramps and I drive straight on.
Since my family has never been one to do things by halves, we decided that, instead of going to a number of festivals, we would just do one and we would do it well. The VIP garden at Hyde Park was filled with elegant bar stools, squashy bean bags, lush palm trees, and high-end eateries and, despite having access to this within our ticket, we strolled straight on through to the Diamond View area of the arena and secured our spot in preparation for Justin Bieber. Having seen the Purpose Tour before, I was aware that Justin spent the majority of his time on the runway coming out from the stage rather than on the stage itself, so Mum and I positioned ourselves at the end of said runway on the second row and here we stayed for the entirety of the day, basking in the glorious sunshine.
It was interesting to witness firsthand the obsession and ruthlessness of the 'Beliebers' around us - they would stop at nothing to make sure that there wasn't anything that stood between them and their idol. It's often assumed that my four wheels equate to a free pass to the front row, but believe me, true fangirls/boys will make it their mission to ensure that this is not the case. No matter what, you've got to earn your position by waving goodbye to the squashy bean bags and acquainting yourself with the muddy field for the duration... but Justin Bieber is so worth it!
After tootying down in front of me to ensure I had a clear view for the past two hours, I'm sure my mum was in need of a stretch of her legs, so instead of hanging round in the hope of getting a taxi back to Euston, we decided to go on foot. In our beautiful British climate, I don't often have the luxury of taking longs strolls as the piercing cold almost instantly freezes my hand, rendering me unable to drive, but on this night, the weather was with us and I managed to drive the whole two-hour journey back to Euston. This may seem like a pretty simple thing considering the day we'd had, but walking with my mum through Oxford Steet at night while the passing rickshaws played Bieber hits was something quite special. It also meant that we could stop for pizza and an oreo milkshake, so all in all, walking back to the hotel was an excellent decision.
Between writing spurts for this post, I've been emailing back and forth with Virgin Atlantic to make the final arrangement for our flight next week (hugely exciting!), but with that comes a certain amount of hurdles to overcome. I plan for my next post to focus solely on my trip to the US, covering everything from the preparation stage to when we touchdown back at Heathrow Airport, so I'll fill you in on everything-USA then.
