What if we viewed lived experience as an asset? As an asset of professional, economic,…
Six months ago today I went to Buckingham Palace to receive my MBE from His Royal Highness, The Prince of Wales. Six months since I became a Member of the Most Excellent Order of the British Empire at the age of 22. So much has gone on in that time.
Six months ago I was just getting over two battles with sepsis (septicaemia) due to infections in my Hickman Line. I had lost most of the build up between finding out I was receiving an MBE, and my day at the Palace, being poorly, asleep or in hospital. However, I was so relieved when I picked up just in time to receive my MBE and have a wonderful day. It is a day mum, Grandma, my nurse Faggie and I will never forget.
Travelling up to London is a regular occurrence for us. Going up to London to go to Buckingham Palace is a new one! We waited outside the gates in the car, mum did my makeup and then the gates opened and we went in, through the gates and then through into the quadrangle where we parked. We got out and gathered, in the baking sun, in the quadrangle before we went in. It all seemed to go so quickly after that. Suddenly we went in, and in the blink of an eye we’d gone upstairs, I was separated from my guests and mixing with the other Honours recipients whilst mum, Grandma and Faggie were taken to their seats in the ballroom. We all mixed and chatted, I met a lot of highly influential people – albeit most of them were too afraid to talk to me, likely due to my wheelchair, so I had to kind of force myself into a group conversation (oh a joy of being disabled). I know people are uncomfortable around disability and people automatically assume we can’t do anything – I got asked numerous times where my carer was because I can’t possibly be in a room on my own – despite the fact that I was a fellow Honours recipient so you’d have thought they’d have worked out I was perfectly capable to have been appointed an MBE at the age of 22. I didn’t let it deter me and joined in conversations with fellow recipients. After the briefing we were taken in groups through to receive our honours, I was in one of the last groups to go through. It all went so fast, one minute we were making our way from the briefing room to the ballroom and then into a room beside it, the next I was in the doorway about to be sent in to receive my Honour. I drove in and waited where I was supposed to, when my name and honour was called I proceeded forward, turned, bowed at Prince Charles, drove up to the dias and Prince Charles stepped off the dias and hooked my medal on the hook on my jacket, and talked to me about my work, what I’ve achieved, he complimented my wheelchair and told me to keep up the good work, and then we shook hands, I reversed, bowed, turned and exited the room. I will never forget those few minutes talking to him, a very special memory. My MBE was then taken off me, put in its box and I sat with my family in the Ballroom whilst the final recipients received their awards. Once the final recipient had received their award, the national anthem was played by the live band. Prince Charles then exited, and the investiture was over. I have a DVD of the day to cherish. Just a truly magical day. And I got to meet Sir Jack Petchey, who was knighted that day. I received a Jack Petchey Award when I was 16, so it was lovely to thank him for his hard work. You can read more about my day at Buckingham Palace here.
So much has happened since that day. In July I finally got back to my charity work that I’d been unable to do since the January, I pushed on with Molly’s training in earnest and started updating this blog again. My work has truly taken off in recent months, I have been extremely busy and had a wonderful time.
I was selected for a Lay Member role on a NICE Guideline Committee in February, but had to relinquish this role when I became poorly late February, being admitted to hospital with sepsis the day before the first meeting. So I relinquished the role and thought that was it. I did keep in contact with them and, once I was well enough, I was invited to take up my role on the committee as they had not filled my place. I was delighted, and went to my first meeting in September, and my second on the 23rd November. It’s such an interesting role and I have learnt a lot from the two meetings. It is wonderful to be able to contribute.
I gained a position on the National Council for Palliative Care’s People in Partnership Steering Group. I have enjoyed this role, too, being able to contribute and I know other projects will result from this role; well, some already have. It’s lovely to get stuck into this role and be able to help guide the charity and its work, and it’s a pleasure working alongside the other members, each bringing a different experience to the role. Through NCPC, I was asked to present a video they were contracted to do by NHS England, this was filmed in October and was first shown at a conference in November. I am really pleased with the finished piece, it was tough remembering the script but I did it! And apparently feedback from people has been positive. You can watch the video here – it’s the video quite far down on the page, under the heading of Planning Ahead, titled Getting The Most From Palliative Care.
I delivered the first keynote speech at the National Advocacy Conference 2016, which was a huge success and by far my best speech. It was such an enjoyable event and I was so proud to have been able to take up the opportunity and make it a success. I hope to do more of it in the future, now I have worked out my own way of delivering the best speeches. Early speeches of mine consisted of me reading a speech, whilst trying to connect with the audience – which usually I lacked the confidence to do. Now, I write a speech, then make prompts and take key words and phrases and write sheets of prompts, from which I can use to guide my speech, whilst delivering the speech directly to the audience, connecting with them and don’t hide behind paper. It works really well for me and I have gained in confidence since working out this method, which works out best for me. I have given three other speeches recently, one at the Rayleigh Trefoil Guild, one at my Grandmother’s church about my work and my MBE – and Molly showed off a few tricks too – and one at the hospice young adult group Inspire. I have enjoyed these speeches – usually I am so nervous I forget to enjoy them – which shows how much better I am getting. It’s nice to see progress and to feel confident and able to enjoy giving speeches.
I have done other things in this time but won’t bore you all silly wittering on and on. I also have a very exciting prospect in the wings, and speeches booked for next year, and other projects that may be possible for me – so things are really looking up.
Also, on the 6th September, Molly finally qualified as my assistance dog with Dog A.I.D. (Assistance in Disability), gaining our access rights, ADI ID booklet and Molly her working jacket. She started training when she was 10 months old in November 2013, so it took nearly 3 years, with 18 months off with me poorly in that time, to achieve this. Molly’s qualification has opened up a whole new world to us both and I have thoroughly enjoyed having her beside me, helping me and giving me confidence. She has become somewhat of a mascot at two of my committee groups, even the organisers have had wonderful feedback regarding Molly being there. Breaks are spent talking to people about what Molly can do and people admiring how well trained she is; it’s wonderful. She breaks the ice. Everyone loves having her there and she enjoys it. I always worried how Molly would cope with the long settles, as she’s a “doing” dog, she has always struggled with the ‘boring’ aspect of being an assistance dog, where she needs to do long down stays/settles, and yet she qualified and suddenly everything fell into place. She has been to many places, hospital appointments, meetings, general outings and she has just absorbed every new experience, gained confidence and is thoroughly enjoying her job. Our last meeting was 6 hours long; we were up at 5.30am, left for London at 7am, arrived at the venue in London at 10.15, meeting ran from 10.30-16.30, then we walked in Regent’s Park in the dark before coming home, arriving at 19.45. It was a long old day, but Molly was absolutely amazing. She just takes everything in her stride. She loves coming with me, and we love having her there – and she brings cheer to everyone wherever we go. I love talking about what she can do, and seeing the magic on people’s faces as they see her help me. She’s an amazing dog, and I am so grateful to Dog A.I.D. as now she can assist me and be beside me throughout my life. An amazing charity, please consider supporting their stamp appeal – Dog A.I.D. Stamp Appeal.
It’s amazing what can change in six months. Also, I received the news that I definitely have a neuromuscular disorder, and next year the testing will start in earnest to see which one – or whether I have a Syndrome Without A Name, in which case, I won’t have a name but we might be able to find the underlying cause. I wrote a blog about it on the 10th November, which came across overwhelmingly positive (read it here) – however, it is not a positive thing. To know I definitely have a progressive, degenerative neuromuscular disorder which is only going to get worse is not a positive thing – it just came across positive because I was relieved and overjoyed that I was being listened to and my concerns that something else was going on were being listened to. Reality hit the next day, and it is terrifying. However, at least I know I have an NMD, and they are trying to find out which one – but the fear and upset is ever present and I know I have to do everything I can whilst I am still able to, because I am deteriorating rapidly and we know things are only going to go downhill; I’ve just got to make the most of the here and now. Do all I can, whilst I still can. Make the most of every day and do things now, not wait, because there will be a time I can’t do them. I am deteriorating rapidly and losing abilities, how weak I am getting is scary, and my poor body is frail and struggling, but I will keep persevering and living my life; I will just have to live it “in the fast lane”.
I am so lucky to have all these amazing opportunities, to have Molly beside me, and to have a wonderful family and support network. There’s a lot for me to be thankful for, and I live each day with a grateful heart. So, it’s time to get back on with living. I have a great life, and I intend to make the most of today, every day I get. To appreciate the wonder of life, the beauty of nature, the fantastic opportunities I am honoured to be asked to take on and amazing people I have in my life.