a note from Clemency

Hello. First of all, I am incredibly grateful to you for your interest in my story, and your (potential) willingness to support me in my continuing recovery and (hopefully) onward journey. I take nothing for granted - even more so these days - and your generosity and willingness to help really does inject a boost of extra hope, and further motivation for me.

As you may know, I was struck by the unthinkable, the totally unimaginable, when a formerly-undetected AVM in my brain suddenly ruptured on January 20, 2020 - not long before the whole world was ruptured by the global COVID-19 pandemic. 

It’s extraordinary to me that we are almost six years from that time. A blink of an eye, and yet an infinite vastness separating that life and this one. I am beyond grateful to be here at all, albeit witnessing the distressing and continuing ruptures of our beautiful world and collective humanity. Although my recovery has been painfully slow to me, with huge effort both physically and neurologically, my doctors maintain that I have made a ‘miraculous’ recovery given what happened to me. They never expected me to be able to speak or walk ever again. Yet I have been able to regain some mobility, and most importantly for me, to re-learn how to form verbal language, i.e. to speak, allowing to me regain a little of my ability to communicate, which as you know was my deepest, truest vocation, as well as my livelihood.

I have made it my life’s work to connect with my fellow human beings through music and the arts: to tell stories, to support, to share, to overcome - together. I was called to this work even as a very young child, when I started learning the violin aged 2; I went on using music, the visual arts, drama, literature and language in various ways, both professionally (at a very high level) and as a form of ‘soft power’, in diplomatic-speak. 

Over the years, some of my proudest achievements have been: co-founding Aurora Orchestra, Vignette Opera, and the arts education non-profit Dramatic Need; serving on the board of Trustees at the Choir of London and playing and teaching in multiple tours to Israel and Occupied Palestinian Terrorities; in the townships in South Africa; and in other regions scarred by recent conflict. Latterly, I was very active as an author - especially through my bestselling Year of Wonder: Classical Music for Every Day series - and as a journalist, documentary maker, and most prominently as a broadcaster (on radio and TV, both live and in-studio). The organisations and institutions I have worked with/for are too numerous to comprehensively list here, but include: the Royal Opera House Covent Garden, The Metropolitan Opera, the Old Vic Theatre, Sadlers’ Wells Ballet, the Barbican Centre, the Southbank Centre, the Hay Festival, Google, Founders Forum, and - chiefly - the BBC, where for almost two decades I was an award-winning broadcaster, working across all channels and stations, especially BBC2 (TV), Radio 3, Radio 4, and BBC Sounds; and New York Public Radio, where I was named Creative Director in 2018, devising and executive producing Webby-nominated podcasts such as The Open Ears Project, and hosting many flagship radio shows including WQXR’s beloved Carnegie Hall Live. I hosted the BBC Proms, Young Musician of the Year, Leeds Piano Competition, The Culture Show, The Review Show, Front Row, BBC Radio 3 Breakfast, and In Tune. The podcast Classical Fix which I devised and hosted won a British Podcast Award in its first season. 

But almost six years into my new life, with no hope of making a full recovery, my situation is literally untenable.

This part of my story is one that the public doesn't see, the endless daily struggles, the work that needs to go into simply getting out of bed, and what is required for me to be in the world, even slightly. As I had a bit of a public platform, I really do want to be a useful example to other disabled people, to spread a bit of hope that shows they mustn’t give up, and raise public awareness and funds for research and support. But I am endlessly dancing on a fault line. Every single second in every single minute in every single hour in every single day, week, month, year, I have to navigate and make a choice. If I haul myself out of bed on one morning, and endeavour to get myself to somewhere - for example a medical appointment with a neurologist; a physical therapy, or occupational/speech/cognitive therapy appointment; a coffee with a donor to the arts organisation nearby; a school meeting; my sons’ soccer matches and so on - that will drain me, inordinately, and send me back to my bed, fretting about the mounting costs involved. (I am ‘done’, as one insurance representative told me, to my face. Humans are expendable commodities, in these times. As we know, the moment you stop being useful to the wider society, you are simply a drain on precious resources. You are done. Indeed.)

I still want to live. But living at what cost?

Please understand that in no way do I ever feel sorry for myself, ruminating on the sort of questions - ‘Why? Why me?’ I ask no such inquiries, feel only endlessly self-renewing gratitude that I was saved by a combination of chance, location, and a brilliant neurosurgeon and his team. What fortune! And so I put myself forward for any neuro- or stroke-recovery-based research trial, including three advanced ones in New York, San Francisco and London. It’s my fervent hope that one day, the research I am contributing to will be of real service and clinal progress to human brains - i.e. all humans - in the future. In the meantime, I have used my platform, in small ways, to get the message out about brain injury. How it can affect 1 in 3 people globally. How the range of brain injuries - both acquired and traumatic - is vast, and not just affecting older people and the very unfortunate. I am living proof of that. I have spoken at medical and technological conferences in New York, in Washington DC, and London. I have written articles, arduously typing with one finger on my left hand, as the right side of my body is completely devoid of feeling or sensation these days. My series ‘Music and Healing’ with Princeton University Concerts was very well-received; in the pipeline are others with the Juilliard School, National Sawdust and beyond.

But - how do I live?

Fault lines, decisions, navigations, insurance, admin, bureaucracy, agony… These things swirl around my brain, my gut, my body. No wonder I still suffer from regular brain seizures, which are terrifying and destabilizing. And how fundamentally isolating and profoundly embarrassing it is: to be so utterly dependent on the kindness of others at the lowest point of my life, especially as I had previously been so independent. The man who helped me off the Subway train in New York when I was having a brain seizure on my own, and waited with me until the ambulance came. The woman who aided me with my bags at Costco when the manager wouldn’t.

And just when I felt that I was hitting rock bottom, feeling like such a burden on my family, friends and community, I became aware of the creeping feeling that many, many of my friends, loved ones and former colleagues were actually seeming to turn away from me. Whether in perception or reality, the feeling was very real, and it compounded the original shame and the pain and the loss; the losses.

And yet. When I think of the people who have also been there for me since that fated January day in 2020, and who are still there for me now, and still showing up for me with utmost grace, kindness, enormous generosity and practical solutions (but not expecting anything in return from me), I honestly could weep. And after I weep, I want to redouble my efforts to recover! I am still determined to, in the future, get back to the things that I have always held so dear - including the arts, music, social justice, community, our common humanity - and to be of service, as much as I possibly can.

With your support, I will be able to continue my specialized speech & language program; my physical, occupational and cognitive therapy, including my musical therapy; and some psychological rehabilitation too.
I am so, so, so grateful for you to even consider helping me.

Thank you from the bottom of my heart.

Clemency

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