I resonate 100% with your beautifully written, heartbreaking words. There really is no good news to report with this illness. If we had the same level of support, research and approved treatments that other diseases of a similar magnitude have, we'd have happy stories to share and a fulfilled life to celebrate.
Samuel, I read your article for a second time. Beautifully written. There is so much strength and wisdom behind your every word. Your reflections on life and being a human are so true. They really help me understand better what it’s like living with ME/CFS.
Everything you have written mirrors my experiences. However I don’t accept that you have been “put here to suffer.” Why you? And who put you?
I don’t agree that
you have specifically been singled out to suffer. Neither do I hold with the notion that there’s an omnipotent vindictive old man sat on a cloud somewhere, smiting all and sundry.
Rather,
our situation is appallingly bad. Bad luck doesn’t come into it imo , as there is no such thing as ‘luck.’ Bad or otherwise.
I’ve been severely ill for 32 years. Initially using a stick to get around with. But graduated to a power chair almost 20 years ago. But once I had to rely on this my opportunity for a social life vanished. No activities outside the home. No leaving the house. ‘Friends’ stopped contacting me. Obviously they were not true friends.
One day it occurred to me that the only way to cope with this was Acceptance. I had to realise that life was always going to be like this and there was nothing I could do about it.
With much effort I gradually became able not to think about the past. And not to anticipate the future. I don’t even know if I will get there. And the past is over and done with. So all I have, and realistically all any of us have, is just this one day.
I have a handful of friends via Google Meet. Who I have never met physically. But they never ask me about my profound disability. Which makes me feel unloved and deeply hurt. But it seems that unless someone is personally affected, they don’t want to know.
I’ve been bedbound now for 2 1/2 years. And my Very Severe M.E. caused a heart attack last Saturday night. I’m too ill to go to hospital. The 116 mile round trip would have been fatal.
Sorry to hear about your illness. That's horrible, it's always moving to hear from other patients. It's lonely and gets harder. I think what you're describing is presence and acceptance, absolutely crucial to enduring this brutal and unrelenting disease.
I don't mean to say that God singled me out to suffer or that there's any reason behind it, it just very much feels that way. I don't know what other purpose my life could have but to bear this with some semblance of dignity.
A human just being that is what we are and in that purist form, is beauty, and it lies in the depth of your soul.
Thank you. I was nodding at every sentence 💗
I resonate 100% with your beautifully written, heartbreaking words. There really is no good news to report with this illness. If we had the same level of support, research and approved treatments that other diseases of a similar magnitude have, we'd have happy stories to share and a fulfilled life to celebrate.
Samuel, I read your article for a second time. Beautifully written. There is so much strength and wisdom behind your every word. Your reflections on life and being a human are so true. They really help me understand better what it’s like living with ME/CFS.
Thank you 🙏
Thank you for bearing witness, Sam. Beautiful and life affirming as crazy as it sounds. Sending love.
Everything you have written mirrors my experiences. However I don’t accept that you have been “put here to suffer.” Why you? And who put you?
I don’t agree that
you have specifically been singled out to suffer. Neither do I hold with the notion that there’s an omnipotent vindictive old man sat on a cloud somewhere, smiting all and sundry.
Rather,
our situation is appallingly bad. Bad luck doesn’t come into it imo , as there is no such thing as ‘luck.’ Bad or otherwise.
I’ve been severely ill for 32 years. Initially using a stick to get around with. But graduated to a power chair almost 20 years ago. But once I had to rely on this my opportunity for a social life vanished. No activities outside the home. No leaving the house. ‘Friends’ stopped contacting me. Obviously they were not true friends.
One day it occurred to me that the only way to cope with this was Acceptance. I had to realise that life was always going to be like this and there was nothing I could do about it.
With much effort I gradually became able not to think about the past. And not to anticipate the future. I don’t even know if I will get there. And the past is over and done with. So all I have, and realistically all any of us have, is just this one day.
I have a handful of friends via Google Meet. Who I have never met physically. But they never ask me about my profound disability. Which makes me feel unloved and deeply hurt. But it seems that unless someone is personally affected, they don’t want to know.
I’ve been bedbound now for 2 1/2 years. And my Very Severe M.E. caused a heart attack last Saturday night. I’m too ill to go to hospital. The 116 mile round trip would have been fatal.
So as usual I just get on with it. On my own.
💙
Sorry to hear about your illness. That's horrible, it's always moving to hear from other patients. It's lonely and gets harder. I think what you're describing is presence and acceptance, absolutely crucial to enduring this brutal and unrelenting disease.
I don't mean to say that God singled me out to suffer or that there's any reason behind it, it just very much feels that way. I don't know what other purpose my life could have but to bear this with some semblance of dignity.
All the best to you and thanks for responding