“Nearly Every Moment…”

My friend Paula Moerland allowed me to post this.

Nearly every moment of my existence
Has been filled with the necessity of caring for this body
This emotional body, so distraught
This mental body, so busy
This physical body, so out of balance

I am not selfish

I am exhausted

When I first read this I had to close my eyes and sit very still.  And as I sat, I remembered something my father said to me so many years ago when he was in a wheel chair. He told me constant pain was exhausting.  I was surprised by this.  I had never before considered what it must be like to be in constant pain.

None of us are getting out of here alive and while we live our lives there’s going to be pain, but some people have to endure terrible suffering.  Too awful for most of us to fully understand or even know.  All of us know someone who has dealt with inordinate pain and yet somehow managed to find a way to transcend it, or used it to create something magnificent.  Those people are guides.  I hear their stories and am in awe of their ability to cope with physical and mental abuse often at the hands of those they should have been able to trust, the very people who should have been there to comfort them, to care for them , but instead turned on them.  Yet despite those wounds they are trying to transcend it, they have the desire to rise above it, not give into it.  There is tremendous power in that.  We humans have an astonishing ability to not only endure, but create astonishing beauty.

Thank you Paula for sending me your beautiful words.

New York City in October

22 responses to ““Nearly Every Moment…”

  1. Chou Chou Scantlin

    It IS beautiful! How many of us can relate to that perfectly clarified phrase, “I am not selfish, I am exhausted”, be it physical, emotional, spiritual, or mental! It all hurts. t is all exhausting, but physical pain is can be the most inescapable of all. May those who understand and care offer some small refuge in their comfort, and…love. Lovely Paula. Lovely Ariane. Oh, to have the power to kiss all owies away! 💓

  2. What a beautiful poem Paula, and a lovely, insightful commentary, Ariane. This really hit home for me. As a SNT (SomewhatNeuro-typical — I’m pretty sure there aren’t many brains that are functioning like mine), I have experienced many facets of “chronic pain”. I was abused by parents physically and emotionally until I left home at the age of 18. That’s a lot of days strung together that had to be endured one at a time. I’ve always thought of it as “siege mentality”. You are under constant attack or the threat of impending attack, so you fortify yourself as best you can. I created escape hatches, like digging tunnels, I suppose. Some led to fantasy, daydreaming and storytelling, which was a healthy way to escape. Most led to various addictions to numb the pain. Perhaps the worst, most self-destructive coping mechanisms involved cutting myself off from my emotions, from trusting anyone, from really connecting with another human being. When I first entered therapy after I became sober, my therapist started talking about “our relationship.”

    “What relationship?” I asked. After his eye-popping response, I followed up with words that still haunt me–that not only could I have said something like this, but I truly felt that way. What I said was this: “If we have a relationship that means were in competition. And I have to win.”

    He diagnosed me as character disordered. When I read what that meant, I didn’t argue the point.

    Most of my life I also suffered from chronic physical pain. a series of knee surgeries, a horrible skin condition, now degenerative disc disease. I carry around a back pillow with me! It’s a amazing how you acclimate to chronic pain. “Meh.” That’s how I feel about it. But I am soooooo happy to have experienced the kind of growth where I can enjoy, even revel, in my emotions, in love, in connectedness. Even hugging is getting easier.

    We can endure so much as human beings. It’s quite remarkable the trauma we are able to withstand — perhaps even experience a sense of triumph. But the most important thing I have learned is that love is always the best balm for pain. And relationships are the only things that truly matter in life.

    As to your assertion that we’re all going to die someday. I wouldn’t be so hasty about that.

    • Chou Chou Scantlin

      Dearest Richard, please read Shakespeare sonnet 119. Thank you for your brave openness today. 💕

      • Shakespeare’s Sonnet 119 –
        “What potions have I drunk of Siren tears,
        Distill’d from limbecks foul as hell within,
        Applying fears to hopes and hopes to fears,
        Still losing when I saw myself to win!
        What wretched errors hath my heart committed,
        Whilst it hath thought itself so blessed never!
        How have mine eyes out of their spheres been fitted
        In the distraction of this madding fever!
        O benefit of ill! now I find true
        That better is by evil still made better;
        And ruin’d love, when it is built anew,
        Grows fairer than at first, more strong, far greater.
        So I return rebuked to my content
        And gain by ill thrice more than I have spent.”

        • Dearest Ariane and Chou Chou, thanks so much for the lovely sonnet and the love 🙂

          • Chou Chou Scantlin

            Awwwww…sorry to keep popping in today:) You two are adorable! I do wish you great longevity, if not immortality! Doc and I are celebrating our 20th wedding anniversary this week. Doc is 65, and sometimes thinks the best is behind him. I pointed out that most of his relatives live to be at least 85, so the odds are we have at least 20 more years together. Quite logically, I have been wishing him, “Happy Halfway Week” every chance I get! It appears to be sinking in 🙂

    • Well if anyone is able to elude death, Richard, it will be you… and if you are able to, give me fair warning so I can trudge hand in hand with you to eternity.
      Love. I know it doesn’t actually conquer all, but it certainly makes life more pleasurable.
      So glad to have met you, my love.

  3. Chou Chou Scantlin

    Yup! I know it by heart! perhaps someday I will have the opportunity to recite it for you…from the ❤
    A+, darlings!

  4. I say something pretty like not being selfish but exhausted a lot lately. In addition to the autism I have very severe arthritis and currently untreatable depression which I was thankfully free of for many years. Since I have yet to be able to adapt to my living situation not giving into exhaustion is an ongoing battle.

    Normally the combination of arthritis and autism is worst because I don’t change what I am doing fast enough or notice how much something hurts until I have done lasting damage to myself. Makes me reluctant to start at times.

    All the supports I was assured the health authority would put in place ultimately didn’t happen. Since everything is all divided up no one is quite sure who’s problem I am. Mental health is leaning heavily once more towards autism not being tedhnically their problem while the autism people of course say I am too intelligent to be their problem no matter how badly I am functioning. I came home from my appointment where I found this out last week and went to bed for a few days. The temptation to do the same now is strong but I do have responsibilities etc… and other members of my family are also struggling so exhaustion must be born. I’m tired of humans at the moment though.

    • Oh Gareeth, that’s awful. Humans really can be very, very trying. Chronic pain is the worst, or as my mother has said to me on more than one occasion, “aging sucks”. 😦

      On a side note, Thank you for all the info regarding the sock wearing of members of the French Foreign Legion, made me wonder where exactly my father got all his misinformation!

    • Hi Gareeth … Perhaps we could lean on each other. I’m here if you want to share. Feel free to friend me on FB 🙂

  5. Ariane, totally off topic but I just had to share this with you – I knew you’d get a kick out of it!


    Last week at the store, I had a meth head in line behind me. The author is SO totally right – you can pick them out a mile away here. Anyhow, he was very talkative, as they usually are. The line was especially slow, and we had a conversation about what we were making for dinner that nite, the benefits of his smart phone, amongst other things. I thought to myself I really sometimes wish people here weren’t so dang friendly. Like I said, here, it is just considered rude to not talk with people in line….so this story made me laugh. Even the meth heads out here are courteous and respectful! 😉

  6. I would guess he probably saw the dessert based pictures where you commonly see them in sandals without socks or even barefoot. Ridiculous in a way to perseverate on the sock habits of a an army now when it doesn’t even have the use of making lessons about avoiding toe jam more interesting but I assume like most things about my autism that it’s a product of the increased suckiness of my situation.

    • Gareeth, I’m really sorry things are so bad, but that you managed to work the words “toe jam” in as part of the descriptor of just how awful things are is a perfect example of what this post was all about. I know it doesn’t help, but your comments are always, always so gratefully received.

  7. Thank you, Ariane, for hearing me, supporting me, helping me and doing so with such love and compassion. You really are amazing; a person to both look up to and aspire to. (I finally got done being too choked up to express.)

  8. Beautiful poem!

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