Reflecting on a decade...

I wasn’t going to do anything public for the new year, but I felt I needed to write something down for myself. It seems strange to consider the previous decade. It would be an understatement to say I’ve been through some ‘stuff’. I suppose everyone has been through something in the last decade. But I can only consider my own life. I guess for anyone who has been through significant illness, it can become a little abstract to think about what has happened and what will happen. I must admit that over the past month, with the ever-nearing end of a decade, I have been having a quiet, internal existential crisis. Who have I been? Who am I now? Who will I be? What will I choose to do? What is going to happen to me? How do I define the purpose to my life as time passes by?

Ten years ago, I had just started secondary school where everything started to go south. If you’d have asked me what I would be doing ten years on, I would have said ‘training to be a doctor’, ‘getting my PhD’ and ‘being generally successful’. That was the plan after all. I knew I was academically capable of doing anything I wanted, I knew that it was an expectation (placed on me by the education system) to go to university. I was given the impression that because of this I was somehow in better standing (although I still don’t quite understand why). I was quiet, mainly kept my head down, did my work and worked very hard to melt into the background socially. But brewing underneath was a deep feeling of shame, and a sense that I didn’t belong in this world. I felt so utterly confused and overwhelmed by the world. However, I believed if I was perfect in every way, then I would be fine. If I could live up to those expectations and stick to the plan, all would be well.

Obviously, things didn’t go to plan. Perfectionism certainly did not equal being ‘fine’ and ‘well’. If you’d have asked me 5 years ago where I’d be now, I wouldn’t have given you an answer. I was convinced I would not be here now. I wasn’t going to live to see the end of the decade. I’d already been in hospital, god knows, how many times and was caught in the labyrinth that is the mental health system. I can’t express in words how dark things got. But I don’t want to reflect on the terrible things that happened to me or the terrible things I did to myself. I want to reflect on the lessons I’ve learned, the people I’ve met and the things I’ve achieved.

The first thing that comes to mind is the extraordinary support I had from friends, family and professionals. Those that really stick with me are my English teacher, Mrs Tomlin, my head of year 11, Mrs Wilson/Gregson, the head of student welfare, Mrs Phillips, and the school counsellor, Tanya. I know that I’ve said this before, I also know that they choose the be modest and deny this, but they genuinely saved my life and kept me going when I had pretty much decided on giving up. In hindsight, I can’t imagine how difficult it was for them, and I send my sincere apologies for causing so much worry. Even though I don’t really keep in touch, they will always be in my thoughts. I hope they are leading happy and fulfilling lives.

I am also reminded of all the people I have met in various hospitals. Each fighting their own battles, but in some strange way we became a team. Thrust into an unfamiliar place together, forced to live with complete strangers, but some unexplainable comradery came from it. I guess when darkness falls, those petty reasons for seeing each other as different lose their importance and everyone comes together to survive. I want to believe that all the people I’ve met in hospital are okay, getting on with life and have found happiness.

In this decade I also went from feeling completely out of place in this world and that I was a deeply flawed person, to discovering that I am autistic and not flawed at all. In this last year of the decade, I have been learning to slowly bring down the mask I’d built to hide behind. The mask that left me trapped, exhausted and empty. I have learnt that nothing is worth hiding who you really are. I’ve learnt that there is a fabulous, supportive, sometimes stubborn and wonderfully kind community of autistic people that I am a part of. A community that makes me feel understood and that I belong.

What can I say about my professional journey? I still don’t quite understand how I went from a shy, anxious and socially awkward person to a successful public speaker and activist. I’m ending the decade as the Chair of trustees for the largest mental health charity in Wales (it still feels odd to say that), having won numerous awards for my work. I’ve just come back from Brussels where I was Master of Ceremonies at a European congress on Patient activism and advocacy. I signed some important paperwork just before Christmas for a very exciting new professional development that I can’t discuss yet. To say, ‘I would have never imagined being in this position now’, is an understatement. Although, I suppose the plan 10 years ago was to be successful – just maybe not in the way it has actually turned out. The best part of my work, by far, has been meeting wonderful and interesting people. I feel so privileged to have been afforded the opportunities I have. I guess the most important thing I’ve learnt from my professional journey, has been that I can trust myself and my judgement. I have strong values which help guide me. I can trust that when I am stuck, I will find a way through. Another important lesson has been that balance is key. I love working, but none of it matters if I can’t look after myself.

On the more light-hearted side, my competitive riding has been an important part of the past decade. I’ve had Tommy, my pony, for just over a decade. In the last decade we competed at national championships across the country. The best moments, for me, being the Pony Club intermediate championships and winning the Pembrey Open class. Both times Tommy and I were on top form as a team and, despite my age and Tommy’s size, we out competed many others. The support I got from my riding instructors got me there of course, and some of the lessons taught in the ring I will carry with me everywhere. Getting straight back in the saddle after a fall, being a good example. For this I cannot thank the team at Mallard’s Reach Equestrian Centre enough. Whilst Tommy and I enjoy the quieter life now, I know that I have his full trust and respect and he has mine.

In this decade, despite all odds, I also managed to travel around Canada with one of my best friends for 8 weeks. An experience that is big for anyone, but a momentous achievement for an autistic person living with mental illness. I couldn’t have done it without my friend, Beth, whom can now make fun of me for the rest of my life for not being able to open a door in Montreal and having mini-breakdown over it. I have also somehow managed to get some qualifications, including straight distinctions in my Biosciences diploma. I have watched my childhood friends grow up, pursue their ambitions and become beautiful people. I have had family holidays that make me smile just thinking about them. And, in between everything, there has been those quiet, humble moments of joy.

Its easy to only consider the negative, to reflect on the bad times, to filter out the good. But I think it’s important to remind oneself of the smiles, the laughs, the adventures and good times. Skirting on the edge between life and death makes one truly consider what is important. I don’t need ‘stuff’, material things, to make me happy. In the worst times, I never wished for more things or for more expensive stuff. I thought about the people, the experiences and the feelings.

If you ask me now what the next 10 years will look like, I can honestly say that I have no f*cking clue. Out of everything I’ve learnt, the crucial lesson has been that you can make the most elaborate plans, but life will always send its waves crashing in and take you of course. The thing that I can rely on, the consistent fact that stares me in the face, is that time is synonymous with change. Thinking I can control that in some way will only bring me grief. So, it is much better to float along with life and learn to swim through rough waters when it’s needed. I will choose to do what makes me happy. If it doesn’t make me happy, it is not worth my time. I will choose to value the wonderful people in my life. I will choose to use my resources to fight for causes close to my heart. And for now, I choose to look forward to when my flowers will bloom in the spring of 2020.

Happy new year!