Thank you, Clare. My four children have varying degrees of neurodivergence, two of them having been diagnosed in very early childhood, but it has taken me forever to recognise how it manifests in myself, and articles like these are hugely validating as I give myself permission to do so.
Oh Clare - reading this really makes me think about the life I try to live. I was hospitalised for years growing up and have never been able to hold down a job or do my A levels or get to University… I’m 64 now and feel desperate to die. I’m a poet but have never entered competitions for fear of winning and having to travel and meet people and stand up to read my work… I don’t have your diagnosis but I do have PTSD plus MS now and I have had enough of all of it. Only diagnosis I have is EUPD. And no help from local people- ie no hospitals available for me to be admitted and waiting for talking therapy but, I don’t know, it all comes too late for me now. Clare - I love your work and I love Kim’s too! I follow you both. Thank you so much for sharing and for everything you give. Love you, take care always. K. xxx
Dear Kate - I'm so desperately sorry you feel so bad. Are we friends on social media? I'd really like to know how you are and whether you are safe ... and to see whether there's any small thing I can do to help you to feel some hope. Drop me a line and let me know x
Oh gosh thank you so much for sending me this reply - means the absolute world to me…
My husband died end of June and I’m caught up with solicitors etc and I’m just desperate to get this house on the market and get the hell out of here. I’m out and out GAY and have been all my life, despite being married to men twice for g sake… I need to get back to the sea, if I manage to stay alive… I’m looking at Walney or Askam in Furness… I need to breathe the sea air urgently… I was sexually abused from a baby up to my Dad’s death when I was 16 and emotionally physically abused by The Mother until she died when I was 31 - followed by hysterectomy at 36 and now I’m drifting, lost and completely alone. All my friends are dead and I have no one at all left. And I feel on the verge of suicide… I’ve not written a poem for over a year now and poetry is my language, my passion and I need urgently to get writing again… but I’m being destroyed by MS - I have a suprapubic catheter and a stoma and huge hernia and I feel disgusting…
Sorry for telling you all this. It is such a relief to just say it out loud. I have Carers morning and evening but they don’t do conversation. I am completely alone. Thank you so much for listening… (I guess it’s Clare I’m in contact with?!) All my love- and by the way- You are the best!!! X
a powerful read Clare....thank you for your bravery. It makes a difference .
On another note. I wrote earlier about not being able to put a new card into substack and I have tried repeatedly with two different cards but now it is rejecting cards that are perfectly ok
Not sure what to do but will try in daylight hours on Monday to get an answer from substack...I can only pay the the bottom tier but I would like to support you two. All signed up for January :) whoop whoop !
So much to agree with and recognise in this very important statement. You point out the contradistinction between having a good life and being able to live a good life. So many obstacles are placed in our way. And I love the glimmers! Definitely borrowing/stealing that idea. Thank you for sharing.
Thank you for expressing all this - so very relatable to many people .. I ask though - who are these ‘ others’ that appear to get on with everything / who know what to do? - Do we know anyone? All I know is how you describe life - in a way I couldn’t do - very grateful of this expression. C
Really important read so glad you highlighted this - I got a glimpse of you and Kim in front of me at the bar at the Forwards but no chance to say hello, It was very busy. I work for on a project ran by an autism charity - living with neurodiversity is so difficult. The statistics on people with autism who are not in work are shocking, I'm writing this extremely hurriedly as I'm always being called away by my teen daughter who is neurodiverse I promised to take her shopping. National Autistic Society and Ambitious about Autism have lots of brilliant resources.
Thank you for sharing this, Clare! It resonated with me on every level, from diagnoses to experiences themselves. Although I am only at the beginning of my poet-journey, my day job as an academic has brought very similar experiences, fatigue and inability to do much when I see others just getting on with their days as normal, being social and after attending tonnes of meetings able to carry on after while allI need is to just lie down and shut myself from the world. I worried for long that something is wrong, but then noted how quietness and calm able to restore me and how to write well too I need prolonged moments of silence. Poetry as you say can be such a source of energy and yet reading it in public or being in workshops rising my hand nervously to ask a question, then having the rest of the day so drained. I also wonder how much I can indeed affect our ability to put ourself out there but then sometimes think maybe among sensitive souls that are inside writers and poets, we may after all have a lot in common and shared and that is okay. All the beauty you see in this and your navigation of this journey and invitation for kindness are so inspirational. thank you!
Thanks for writing this. Loop earplugs are such a great wellness tool, yay for them and spikey massage balls and acupressure mats. Glad you had plenty of good glimmers. Love and massive hugs ❤️🤗🤗
My marvellous son recently went private to get his ADHD diagnosis. It took a wodge out of his savings and I couldn’t at the time see why he needed it. I tried to talk him out of it. Why get a label that could make you unemployable? But he now I and his Dad are able to see the family traits in ourselves and our lads. Everything you have just described is there.
I’m at the beginning of my poetry- my debut pamphlet launch is next week in Reading. I’m not at all sure I know how to navigate this. But now I have a little inkling of what may stop me.
Oh my goodness Clare! You write so clearly and beautifully about your lived experience. My sons and me, can resonate in our various ways. You offer a breathing space in the words you write here. It’s hard to move sometimes with the weight of the masks… hiding is such hard work. However, you show there are glimmers. Thank you so much for your openness and generosity. Mary
Thanks for this. It helps explain a lot of my experiences. I was at Winchester Poetry Festival & had no idea of what you might have been going through. Everyone I spoke to from Winchester poetry scene had nothing but praise for you. No other judge has ever taken the time to introduce EVERY poem and say what they liked about it. You were awesome.
Oooof. So many feels and also such a sense of 'omg thank goodness there is more talk and thinking and love a
emerging around all this.
People who have noticed I tic have often asked if I tic on stage and I have to say in all the years, I don't think I ever have. I know it. It feels OK. I don't think I am 'doing it wrong ' and maybe that's why. Or then again, maybe my brain is too busy.
I am possibly the most inconsistent performer /writer I have met in my entire life. I pop up, do some stuff. Get gigs, get overwhelmed, dissappear again- sometimes for a few years.
I think because I am also soooo sociable and love to be with people , it took me so long to realise how much energy and masking it took and how much my ADHD and lack of understanding of it, was contributing to intense and recurring mental health issues.
I have applied for access to work funding and honestly, if I get it, it will change my life.
But also, the network of amazing friends with their awesome and incredible brains and bodies and varied access needs and how we all help each other out is so so incredible and affirming. So yay hope and thank you for your words, which mean so much
Clare, I feel simultaneously so sad that you feel such intense discomfort at times, moved that you live a powerful, generous, public life nonetheless & in awe of your capacity to describe the intense sensory & social intricacies of that discomfort with SUCH beauty and precision. I certainly have my own version of this (are there people who don't?), you breathe light into that darkness, thanks. xx
Thank you, Clare. My four children have varying degrees of neurodivergence, two of them having been diagnosed in very early childhood, but it has taken me forever to recognise how it manifests in myself, and articles like these are hugely validating as I give myself permission to do so.
Thank you Deborah - good to hear from you.
Oh Clare - reading this really makes me think about the life I try to live. I was hospitalised for years growing up and have never been able to hold down a job or do my A levels or get to University… I’m 64 now and feel desperate to die. I’m a poet but have never entered competitions for fear of winning and having to travel and meet people and stand up to read my work… I don’t have your diagnosis but I do have PTSD plus MS now and I have had enough of all of it. Only diagnosis I have is EUPD. And no help from local people- ie no hospitals available for me to be admitted and waiting for talking therapy but, I don’t know, it all comes too late for me now. Clare - I love your work and I love Kim’s too! I follow you both. Thank you so much for sharing and for everything you give. Love you, take care always. K. xxx
Dear Kate - I'm so desperately sorry you feel so bad. Are we friends on social media? I'd really like to know how you are and whether you are safe ... and to see whether there's any small thing I can do to help you to feel some hope. Drop me a line and let me know x
Oh gosh thank you so much for sending me this reply - means the absolute world to me…
My husband died end of June and I’m caught up with solicitors etc and I’m just desperate to get this house on the market and get the hell out of here. I’m out and out GAY and have been all my life, despite being married to men twice for g sake… I need to get back to the sea, if I manage to stay alive… I’m looking at Walney or Askam in Furness… I need to breathe the sea air urgently… I was sexually abused from a baby up to my Dad’s death when I was 16 and emotionally physically abused by The Mother until she died when I was 31 - followed by hysterectomy at 36 and now I’m drifting, lost and completely alone. All my friends are dead and I have no one at all left. And I feel on the verge of suicide… I’ve not written a poem for over a year now and poetry is my language, my passion and I need urgently to get writing again… but I’m being destroyed by MS - I have a suprapubic catheter and a stoma and huge hernia and I feel disgusting…
Sorry for telling you all this. It is such a relief to just say it out loud. I have Carers morning and evening but they don’t do conversation. I am completely alone. Thank you so much for listening… (I guess it’s Clare I’m in contact with?!) All my love- and by the way- You are the best!!! X
a powerful read Clare....thank you for your bravery. It makes a difference .
On another note. I wrote earlier about not being able to put a new card into substack and I have tried repeatedly with two different cards but now it is rejecting cards that are perfectly ok
Not sure what to do but will try in daylight hours on Monday to get an answer from substack...I can only pay the the bottom tier but I would like to support you two. All signed up for January :) whoop whoop !
Thanks for your kind words and for your generosity Kathleen - hope the card issue is sorted out - and see you in January!
So much to agree with and recognise in this very important statement. You point out the contradistinction between having a good life and being able to live a good life. So many obstacles are placed in our way. And I love the glimmers! Definitely borrowing/stealing that idea. Thank you for sharing.
thanks to you as well - and wishing you many glimmers x
Thank you for expressing all this - so very relatable to many people .. I ask though - who are these ‘ others’ that appear to get on with everything / who know what to do? - Do we know anyone? All I know is how you describe life - in a way I couldn’t do - very grateful of this expression. C
Really important read so glad you highlighted this - I got a glimpse of you and Kim in front of me at the bar at the Forwards but no chance to say hello, It was very busy. I work for on a project ran by an autism charity - living with neurodiversity is so difficult. The statistics on people with autism who are not in work are shocking, I'm writing this extremely hurriedly as I'm always being called away by my teen daughter who is neurodiverse I promised to take her shopping. National Autistic Society and Ambitious about Autism have lots of brilliant resources.
Thank you Rachel - and a belated HELLO! x
Thank you for sharing this, Clare! It resonated with me on every level, from diagnoses to experiences themselves. Although I am only at the beginning of my poet-journey, my day job as an academic has brought very similar experiences, fatigue and inability to do much when I see others just getting on with their days as normal, being social and after attending tonnes of meetings able to carry on after while allI need is to just lie down and shut myself from the world. I worried for long that something is wrong, but then noted how quietness and calm able to restore me and how to write well too I need prolonged moments of silence. Poetry as you say can be such a source of energy and yet reading it in public or being in workshops rising my hand nervously to ask a question, then having the rest of the day so drained. I also wonder how much I can indeed affect our ability to put ourself out there but then sometimes think maybe among sensitive souls that are inside writers and poets, we may after all have a lot in common and shared and that is okay. All the beauty you see in this and your navigation of this journey and invitation for kindness are so inspirational. thank you!
Thank you so much for this beautiful message - and wishing you many glimmers on your journey x
Beautiful and helpful - recognise elements of myself so much … tender friendship from afar as we move magically onwards wobbling gloriously as we go
Thank you, lovely Clare x
Thanks for writing this. Loop earplugs are such a great wellness tool, yay for them and spikey massage balls and acupressure mats. Glad you had plenty of good glimmers. Love and massive hugs ❤️🤗🤗
My marvellous son recently went private to get his ADHD diagnosis. It took a wodge out of his savings and I couldn’t at the time see why he needed it. I tried to talk him out of it. Why get a label that could make you unemployable? But he now I and his Dad are able to see the family traits in ourselves and our lads. Everything you have just described is there.
I’m at the beginning of my poetry- my debut pamphlet launch is next week in Reading. I’m not at all sure I know how to navigate this. But now I have a little inkling of what may stop me.
Wishing you a brilliant launch, Kim, and all the courage and space you need to navigate this journey on your own terms x
Thank you. I’ve made it a family party with added extras - on the advice of Jo Bell.
thanx Clare, I'm inspired to apply for access to work funding.
What brave and beautiful piece of writing. Thank you Clare for some insight and for the glimmers. I’m going to collect some today. X
thank you so much, Ann! wishing you glimmers x
Oh my goodness Clare! You write so clearly and beautifully about your lived experience. My sons and me, can resonate in our various ways. You offer a breathing space in the words you write here. It’s hard to move sometimes with the weight of the masks… hiding is such hard work. However, you show there are glimmers. Thank you so much for your openness and generosity. Mary
Thanks for this. It helps explain a lot of my experiences. I was at Winchester Poetry Festival & had no idea of what you might have been going through. Everyone I spoke to from Winchester poetry scene had nothing but praise for you. No other judge has ever taken the time to introduce EVERY poem and say what they liked about it. You were awesome.
Oooof. So many feels and also such a sense of 'omg thank goodness there is more talk and thinking and love a
emerging around all this.
People who have noticed I tic have often asked if I tic on stage and I have to say in all the years, I don't think I ever have. I know it. It feels OK. I don't think I am 'doing it wrong ' and maybe that's why. Or then again, maybe my brain is too busy.
I am possibly the most inconsistent performer /writer I have met in my entire life. I pop up, do some stuff. Get gigs, get overwhelmed, dissappear again- sometimes for a few years.
I think because I am also soooo sociable and love to be with people , it took me so long to realise how much energy and masking it took and how much my ADHD and lack of understanding of it, was contributing to intense and recurring mental health issues.
I have applied for access to work funding and honestly, if I get it, it will change my life.
But also, the network of amazing friends with their awesome and incredible brains and bodies and varied access needs and how we all help each other out is so so incredible and affirming. So yay hope and thank you for your words, which mean so much
Clare, I feel simultaneously so sad that you feel such intense discomfort at times, moved that you live a powerful, generous, public life nonetheless & in awe of your capacity to describe the intense sensory & social intricacies of that discomfort with SUCH beauty and precision. I certainly have my own version of this (are there people who don't?), you breathe light into that darkness, thanks. xx