Myself (47) and my good friend; Freya Levy (24), thought this was a great use of the platform and it became a catalyst to write this and tell you about disability and us!
It has been nearly 25 years since my diagnosis of Muscular Dystrophy (a muscle-wasting condition) and 10 years since Freya received her diagnosis too, and we wanted to talk about it and write a shared blog post off the back of Alex’s programme.
I first met Freya in the Houses of Parliament a few years ago, believe it or not. We were there to discuss access to grassroots sports with representatives from the sporting community, the leisure industry and indeed politicians. Our friendship grew and we quite often caught up when Freya played Basketball at the Stoke Mandeville Stadium (home of the Paralympic movement).
Talking about Alex Brooker’s programme last week, we agreed how so very close to home it was and how so much of it resonated with us. Coming to terms with a disability that can change your life quite dramatically, and quite quickly, was a shock to the system for both of us. Upon being diagnosed, Freya immediately grabbed the bull by the horns and wrapped herself up in the most amount of disability sporting opportunities that her body could handle. Her aim was to turn her negative into a positive, reach for the stars and represent our nation at international events.
I wasn’t so fast off the mark and it took 20 years to realise I had to do something to help myself and others. We, as a family, started fundraising about five years ago. Social media and self-promotion have been a huge part of this fundraising and have grown to be a vital tool in its success, so much so that it has effectively become a voluntary, part-time career for me. Social media has allowed me to connect with celebrities and influential people who have helped and supported me to raise funds, which has subsequently enabled transformational research into our condition to take place.
Alex said at the start of the programme that he wasn’t the same as everyone else and that stands with us too, and for me this isn’t a bad thing. It’s good to be an original! Alex also spoke about getting out of jobs and errands around the house because “he didn’t have his leg on”, which made myself and Freya laugh when we had our ZOOM meeting to discuss writing this. Sometimes our disability and its severity can be selective, particularly if we want to push the boundaries with our partners and family. All tongue-in-cheek and done with a light heart of course, but a cup of tea always tastes better if someone else has made it, with your instruction from the front room “…and don’t forget the biscuits”.
The next part of the programme was similar to what myself and Freya did to write this, and that was to meet up with an old friend and discuss each other’s lives, how things are now and how certain things are dealt with. And a big talking point for us was the mention of this being self-deprecating. We agreed that it’s acceptable and sometimes it’s the ice-breaker and makes things easier for everyone. It doesn’t matter, disabled or not, if we laugh at ourselves. We should all do this. I remember shortly after my diagnosis that my brother (diagnosed with the same condition) had trained his Rhodesian Ridgeback to pin me to the floor on command, just for a laugh. So, in return I trained my Boxer dog to steal his walking stick whenever he put it down or didn’t need it, and this would render him stranded. Again, just for a laugh. We always ended up laughing about this even after some terrible falls and the occasional trip to A&E. It’s important that we laugh, it’s sometimes the best tonic of all when you have a diagnosis of a condition with no treatment or cure. When everything else seems so bleak, comedy and laughter can boost you more than any tablet or pill ever could.
With a muscle-wasting condition the importance of being idle goes without saying, rest is most welcome. However, Alex put an emphasis on his huge love for Arsenal Football Club and how it felt to, maybe just for a few minutes, have no disability at all, to feel the same as 60,259 other people. I cannot stress enough how important this part of the show was for me. Unlike Alex I don’t support Arsenal, I’m a very loud and proud Leeds United supporter, but it hasn’t always been that way. I used to creep into Elland Road under the radar, because I walked funny and wobbled a lot. But after writing blogs and posting videos on social media, I have been lucky enough to be welcomed by so many new friends who feel like family to me, that I now stroll into the ground in my wheelchair with my head held high seeing so many familiar, beautiful faces. It’s now that it feels like home, and as Alex mentioned, maybe just for a few minute bursts, the disability is gone for me; we are all together and all want the same thing; the elusive three points.
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| Front row, Elland Road! |
Like myself, Freya finds sport to be an imperative factor in her life. She has a six-year plan to achieve as much as humanly possible before Muscular Dystrophy taps her out of sport altogether. One of the reasons Freya is a good friend of mine is that she is a very determined fighter and will never be told when to quit. Playing Rugby 7s, Ice Hockey and Basketball, all on an international level, should give you an idea of the type of person she is. And now she’s eyeing up Rugby League too. If I was the opposition, I would have concerns that someone like this is coming at me!
It’s never been straightforward though, and Freya told me how she has fought through so much to be where she is in life right now. In 2016 she spent four months sofa-surfing and living in her car, because she had problems with appropriate housing. She was pushed from pillar to post, put up in hotels and hostels, until she was put into an old people’s home, where she was subjected to vile bullying and abuse from other residents.
All of this, and then in May 2016 Freya went to Germany for the European Basketball Finals which might have put her new, appropriate accommodation at risk. But she took that chance and went on to achieve a gold medal. As if that wasn’t enough to make you smile and feel proud, she then got up the next day at 06:00 to fly straight to Texas to meet Michael Johnson (American retired sprinter who won four Olympic gold medals and eight World Championships gold medals) to take part in his Young Leaders sports programme and to better herself.
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| Freya with Michael Johnson |
So, you see, when someone like Alex speaks so openly, this enables others to do the same. He has become a catalyst for conversation and might not have even had that intention or realisation that this might happen. But the other important part of this conversation is self-analysis.
Freya and I both agreed that it was good that Alex re-visited Great Ormond Street to discuss his body, and to talk quite frankly about change. When a specialist tells you there is nothing they can do, then you have a tendency to cancel hospital appointments because you deem them useless. However, we have both decided to get back in contact with hospitals and GPs to discuss our futures, knowing that these conversations could be difficult and hard to face up to. But we both know they are conversations that need to be had and not swept under the carpet any longer.
Sometimes thinking and talking about the future can be scary and so very hard to face up to. But if you fail to prepare you should be prepared to fail. This is why we spoke openly about our pains on our ZOOM chat; we both have severe neck and shoulder pain and Freya suffers badly with scoliosis, so appointments will be set up with Queens Square hospital and John Radcliffe respectively.
In the documentary Alex spoke to a call centre (Scope) which dealt with many different problems surrounding disability and the help that people needed, and sadly there were so many stories to be told. Luckily, Freya and I have been helped by Muscular Dystrophy UK and their Advocacy service, for which we have so much gratitude. That then leads me onto our support network and all of those around us; the family and friends who would move heaven and earth to help us and the others we wanted to help too. We have raised a few quid and paid for two important power chairs, to make a radical change to people’s lives that desperately needed them. We have pushed ourselves because the network around has helped us, and we feel extremely lucky and grateful for this.
I am not the best at disability speech, even at my age I do not always get things right and I’m not afraid to say that I’m still learning. I think the second time I met Freya I asked her why see was wearing £180 Nike Air Jordans when she was always in her wheelchair. And she replied that they were the most comfortable shoes you could put your feet into, because you’re in a chair they stay crisp and that really grates on people like me (ambulant, walking types). That was me told, and now that I use my own wheelchair I also rock up in my Air Jordans, for all of the same reasons mentioned above.
We will never go forward in this life if we do not talk and sometimes have uncomfortable conversations. Alex Brooker’s documentary has rung so many alarm bells and I’m so very glad about that, because appointments will be made and we will take a good look at ourselves in the mirror. Disability should not be what defines us. I haven’t really ever considered that it does with me, in fact I would say that it has affected me positively. I’ve done so many great things with so many great people, I have made memories I never thought I would have, and this is what disability and us means. Freya and I have gained so much positivity out of something so negative, and the results and outcomes could have been so different.
https://www.bbc.co.uk/iplayer/episode/m000kqkf/alex-brooker-disability-and-me
#BeSelfless
#MusclesMatter
