One pixel

Is it just us, or does the experience of living with and caring for someone with very Severe ME mean that along the way, we are talking decades here,  most people : I mean, friends, church,  neighbours, charities, fellow activists, literally,  stop speaking or give-up trying to reach out  to you?

How little they understand of  how tiny our life is.

This picture is 200 pixels; our life,  I declare, feels like one, at best maybe a handful of pixels, compared to the millions of billions  of pixels that make up normal living. There is not much we can do in reality to help. Get to know us and  you too, most likely,  will be disappointed I think.

These beautiful , warm, scented,  Spring days . My wife sits beside me shaking in pain , with  far too many  mind-bogglingly complex and evolving symptoms ,  for me  to try and comprehend.

Here's me;   feeling  like the man  in the Zen story,  chased over the edge of the cliff by the tiger, hanging by both hands,  over the  sheer drop,  onto the  strawberry plant, unable to bear my weight.

In the story the Zen master plucks and savors a strawberry. Best not to let fear, anger, despair, get to you.

Comments

  1. Good morning Greg, I do not know why people stop trying to reach out, or why they do not speak.

    I do not have 'severe' ME but it happens I think on all levels. (Although I am not for a second comparing our lives!). I do not speak about my illness AT ALL to any family and it is slightly mentioned amongst VERY close friends. But, no one really knows how it is. (Because they do not want to know).

    Putting on a painted smile is now second nature.

    What struck me most about this post today is this:

    "Get to know us and you too, most likely, will be disappointed I think".

    Oh Greg!!! You are so VERY wrong!! Getting to know you both has been the best gift I could ever have had! I am just sad that you do not realise what you give to so many.

    Your support and encouragement and most of all simply your friendship is for me, more than I can find the words for.

    Friends are kisses blown to us by angels, I am thankful for my angel bringing you both into my life.

    C xx

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  2. No it isn't just you. Today, I spent my time in the garden alone (again) as my husband lies in bed in a darkened room. I know I should be enjoying the sunshine but how can I when my husband is suffering so much. This has gone on for nearly 12 years and we have become so isolated. My family live no more than 5 miles away and I might see them every few months when I get the opportunity to visit them (alone).
    We used to pretend that friends and family disappeared because they didn't understand. I have accepted now that they disappeared because they didn't care enough.
    We try to make up for that lack of concern by living our life for each other. Our Christian faith keeps us going. God never abandons.

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  3. It is sad but true . out of sight becomes out of mind. One very close christian once said to me " we don't know what to do with you ". Sincere , but i didn't ever see them again.I literally thank God for facebook .at last I have reconnected with some amazing , brave , funny , intelligent , quirky and wonderful people . they are not of the other world but are of my world and as long as we stand together, something good happens .I look forward to exploring your beautiful site. thank you

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  4. No , it not just you. Before M.E. , i was a very social person. Working full time at a very demanding occupation , self-employed , i enjoyed several circles of friends and friendly acquaintances.
    I re-created this pattern after several geographical moves. I also engaged in activities for their own sake : walks , camping trips , fishing , going out with friends , gardening , taking classes , giving classes , volunteering at different periods.
    Now, and for the last several years , i go from recliner to bed and back , often with great difficulties.
    I can count on less than one hand the friends who still reach out to me. Those are the ones who endured many instances when i could not respond or had to decline invitations.
    May you find solace , respect , comfort and small or great reasons to be happy. You are not alone as a recluse. Some of us understand how devastating such a condition can be.
    Keep writing ! It helps you. It helps us.
    Thank you.

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  5. Thank you so much for your comment and thoughtful , wishes : "solace, respect and comfort" are so insightful - it makes all the difference in the world to know that in some way these posts help. Bless you.

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