Brilliant Emma, thank you. I think that the two great enemies of coping with Parkinson's are hope and fear. And that the only way to meet the challenge is to take each moment as it comes. We've all heard that, we all acknowledge that it's true, and we all know how goddamn difficult it is to actually put that into practice. Thank you for letting your hair down and ranting this honest rant, which has reminded me that sometimes there is no shame in complaining. We sure do have something to complain about! Although, and here's where it gets tricky for me, I have to always remind myself that I could be in the same physical situation, but find myself in Gaza, Ukraine, Sudan, or any number of places where I don't honestly know if I could even handle the present moment. Anyhow, carry on kindred spirit. I love your writing.
It took me 5 days to find the time to read this....but I never erase your emails. Your emails are the one I will always get to and this letter is why. This is one of the best things, in my opinion, you have written. There were many sentences that made me want to cry, they are so true, powerful, and resonant. "This slow erosion is what society fails to grasp. The loss is not just physical. It’s the loss of identity, of certainty, of belonging. It’s the grief of becoming a stranger to yourself. And when that grief is met with a system that punishes you for not ‘overcoming’ it fast enough, it compounds the loss." 😔 Thank you for your words Emma! ❤️
But what I failed to account for that you captured is that we don’t grieve just once and are done with it. We have to keep grieving again and again as our functioning continues to diminish and we become less of the person that we once thought we knew. I am so sorry that there are systemic forces in the UK impinging on your life. Isn’t PD hard enough without external factors making it harder?
Thank you, Piet. It has come as a shock to realise that the process of grieving is a continuous flow of ups and downs...on and off. Thankfully I am not dependent on benefits but many, many people are and sadly I might need to be one day.
There is definitely grief. There is no way around it. I feel it's part of coming to a kind of acceptance. That's different for everyone. U look at this dragged body and face and remember who I used to be.
Brilliant Emma, thank you. I think that the two great enemies of coping with Parkinson's are hope and fear. And that the only way to meet the challenge is to take each moment as it comes. We've all heard that, we all acknowledge that it's true, and we all know how goddamn difficult it is to actually put that into practice. Thank you for letting your hair down and ranting this honest rant, which has reminded me that sometimes there is no shame in complaining. We sure do have something to complain about! Although, and here's where it gets tricky for me, I have to always remind myself that I could be in the same physical situation, but find myself in Gaza, Ukraine, Sudan, or any number of places where I don't honestly know if I could even handle the present moment. Anyhow, carry on kindred spirit. I love your writing.
Thank you! Yes, I always have reservations about venting because I recognise that I’m in an incredibly privileged position.
Somehow it's always a surprise when the grief comes back to me. I thought I would get used to it over time.
Yes I think that’s the hard bit!
Beautifully put, Emma 😪
Thank you xxx
It took me 5 days to find the time to read this....but I never erase your emails. Your emails are the one I will always get to and this letter is why. This is one of the best things, in my opinion, you have written. There were many sentences that made me want to cry, they are so true, powerful, and resonant. "This slow erosion is what society fails to grasp. The loss is not just physical. It’s the loss of identity, of certainty, of belonging. It’s the grief of becoming a stranger to yourself. And when that grief is met with a system that punishes you for not ‘overcoming’ it fast enough, it compounds the loss." 😔 Thank you for your words Emma! ❤️
Thank you, Jen, this means so much. It seems I make a habit of making people cry! love and hugs xx
Thank you for your well-spoken words. I'm feeling this so much now, especially the grief.
What ever happens, please keep on writing.
Oh thank you Nancy! Your support keeps my fingers on the keyboard.
Love, love this. You describe it with such poignancy, thank you!
Thank you xxx
I love your writing and how you describe we become strangers to ourselves, and are dealing with grief daily. Thanks for your great insights.
Aiyana
Oh thank you so much xx
Heartbreaking.
❤️
Emma you are spot on yet again! This is a theme that I explored in a post a couple of years ago https://open.substack.com/pub/pietlammert/p/iridescent?r=axmgb&utm_medium=ios
But what I failed to account for that you captured is that we don’t grieve just once and are done with it. We have to keep grieving again and again as our functioning continues to diminish and we become less of the person that we once thought we knew. I am so sorry that there are systemic forces in the UK impinging on your life. Isn’t PD hard enough without external factors making it harder?
Thank you, Piet. It has come as a shock to realise that the process of grieving is a continuous flow of ups and downs...on and off. Thankfully I am not dependent on benefits but many, many people are and sadly I might need to be one day.
There is definitely grief. There is no way around it. I feel it's part of coming to a kind of acceptance. That's different for everyone. U look at this dragged body and face and remember who I used to be.
Yes, acceptance is the ultimate solution but it ebbs and flows little. love to you xx