What inspiring insightful posts. I guess this is why I shared my sadness. I knew you'd "get it" in both senses of the meaning.
Tears are infrequent for me, but as I wrote my initial post, my face was covered with a sheath of tears. And again, when I read your posts. Definitely healing.
Laura, Otis, Shane and gracenote – I so agree that it’s really a cycle of loss, mourn, adjust/adapt and then reaching a new level of acceptance.
Shane – what a tough one re your wife right now. You know, I think we’re a bit like war-hardened veterans. We get used to our lives, & living with this disease becomes our new “normal”. Then every once in a while, some thing, awareness, event.... reminds us that this is NOT normal for the average healthy person, or for us pre-disease , and gets under our toughened skin, reminding us afresh of what a stinker this disease is, and of our losses & hardships while the wound is exposed for a bit.
And thank you gracenote – I do find comfort around and within myself – even within my tears. I hope the same is true for all here.
Esther12, Greggory and starryeyes – I know what you mean about how people tend to avoid, turn away from, dis-connect from and perhaps devalue those who are “not normal”. Pre-disease I had noticed this reaction when people would see someone with some type of physical problem - a large scar on their face, a burn, a missing or deformed limb.... Never thinking that I would one day be the catalyst for such behaviour. And then, when I was really grey, moving at a snail’s pace etc and obviously ill, many strangers would do the same.
I yet again thank my lucky stars that this has not been much of an issue for me – I only lost one “friend” from this. It was easy to be in that lofty place that recognizes that this is human nature – her weakness and loss, and to not take it too personally for too long (although I still detect an edge of bitterness in myself at her). From that experience though, I can see that it would be much tougher if this was happening with more people in my life.
And so agree that it is our self-definition that matters. Pre-disease I had worked hard at not thinking that “I” am my job, body, brains, wealth, beauty, wit, intelligence................... or what others thought of me, and thought (ha ha) I was not seeing myself as those things. Well – once getting sick – BAM – found I still had all of those things as part of my self-definition. Made me dig deeper.
Flybro, The Spitfire, Kati, dancer, shiso, Victoria, and helsbelss – thank you all for letting me know I’m not alone. This community is wonderful at being a mirror for one another. Dancer, think you expressed more clearly what I was trying to say at the beginning, “...acknowledge that it IS so difficult and WHY it is so difficult. And sometimes just recognizing it all (and knowing others are fighting this same battle) helps me go on a bit more.”
Orla, Adam, Rebecca 1995, DB, Dr Yes (avatarless???), and Margaret – thanks for the hugs, good thoughts, and love. Back at you all.
And Mr Kite – glad you stuck your neck out (snicker) to express your empathy and humour!
A thought came to me as I was writing this novelette. In cross-cultural awareness, an iceberg is often used to describe how culture is perceived
I feel that there are parallels with living with a chronic disease. People can see the top tip of the iceberg of what it means to be living with this disease, but few who haven’t experienced something similar can understand all the deeper levels that are affected as well.
To carry the analogy a bit further, we were kidnapped from the culture we lived in pre-disease, and thrown into the new living-with-ME/CFS culture, having to figure out what the cross-cultural differences while impaired by the disease itself.
This disease sucks, but your lovely company makes it more bearable. Thanks.
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