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Five Things

The hardest thing for me about this past week is starting a new life. I’ve gotten reasonably good at this in my own sphere—projects, locations, content, people—but returning to visit my parents in my childhood home has been, for better or worse, changeless. Today I sat with my father at Spaulding Rehab Hospital observing his speech therapy. He relearns the language of counting to 5. How to touch five blue wooden blocks and count, 1, 2, 3, 4, 5. How to look at the numeral ‘5’ and say five. Sometimes the therapist puts two blue blocks on one side and five blue blocks on the other and holds up a piece of paper with the numeral ‘5’ and says Which one is five? He struggles to understand what she has said. He counts 1, 2 on one side, then slowly, hesitantly 1, 2, 3, 4….he gets stuck here, 4, 4, 4, 4, 7, 4, 7, 7, 7…She stops him and asks again Which one is five? He looks and we hear him working through the strategy of counting up. He points to the group of five blue blocks and says Five, and she beams at him and gives him a thumbs up.  That is when it goes well.

He groans because he knows exactly what is happening and the frustration of not being able to do this fundamental task feels wretched. But he knows there is no other way, no way out of this torment of going, at the age of 92, in a few short hours, from being an intellectual, a scientist, a philosopher writing research papers, and attending and giving high end lectures, back to 1, 2, 3, 4, 5.

 

Turkish ArabesqueForeign Land
One morning he woke in a foreign country, not understanding words spoken around him, not being able to read the alphabet, and not being able to speak words he had known all his life. They existed, but he couldn’t find them. The term for this is aphasia, the result of stroke, in which a blood clot gets caught in an artery in the left brain hemisphere impeding blood flow and, in his case, killing tissue around the areas that effect language–speaking, understanding spoken words, reading, writing. Communication is complicated. His hearing center is fine. His ability to perceive and connect with music is fine. His motor cortex is fine. He can squeeze my hand, walk, button his shirt, pick up his tea cup and open his book, but he can’t decipher the words on the page.  A great deal is in tact, but what is damaged screws the whole process. He is ‘in there.’ I know it. But the way in and out to reach him has been erased.

I try to imagine this. It is as if I went to move my arm and it went backward instead of forwards. I try to move it in a circle but for some reason I can’t remember what a circle really is. I know that I know what a circle is, but I can’t grasp the edge of the motion and my arm, trying to obey me, flutters in the back. If I look at other people they are doing strange gestures, or walking backwards through the hallways. Maybe this is what his world is in language.

 

Turkish ArabesqueSitting with My Father
I sit with him in the evening. He is tired. We are alone together in his little room. He is strapped into a wheelchair so he won’t dart about and fall, even though that part of life is mostly okay. He looks at me. He shrugs a bit. Says a few unintelligible words. He looks and looks, as if he could pour his inner life through his eyes into me. I know he is feeling weary of it all. His fear of death faces him. I know he has a low opinion of death; he thinks it is not something to look forward to, that non-existence. He has had a ridiculously blessed life, and he has not wanted to leave it, but just now he gets a huge misery. Right now he is coming to terms. I know he is terrified. I say, I know Dad. And I do. Somehow I do. He nods.

Between the labor of finding words, he hunts for a bit of peace, a bit of familiarity that can bring comfort. Italian Renaissance art, the taste of coffee, music. I brought his favorite CD of Itzahk Perlman playing the Brahms Violin Concerto. He listens to this on a discman and life is solid again. So there is music. We hold hands.  This seems pretty good.

I often write about trusting my body.  Would I, if faced with a loss like his, focus on the enormity of loss, as he must right now (at rehab they work him and work him in hopes of some recovery) or would I turn towards the shreds of myself? Would I turn to music and daylight if language left me? Would I turn to breath sliding in and out of my nostrils if motion left me?

 

Turkish ArabesqueTurn Away, Turn Towards
His loss is mine, and his question becomes mine. After Spaulding, I drive back home. The house is cavernous and flat without him. Meaningless, in a way. His absence shows me the enormity of his presence. What was changeless is now changed. My mother putters around, quietly losing her mind, gently stashing it in small dark corners, hoping to remember…just what, she wonders, then forgets to remember…He can’t be with her now. She digests that. I digest that. Home had been tucked into my back pocket, a worn bit of paper with a poem. Now I reach back to find a shiny oblong of plastic with New Rules about this new time. 1. Say two words and use a hand gesture. 2. Move calmly and smile. 3. Flood the room with uplifting daylight. 4. Remove treacherous chairs and tripping up rugs. 5. Love and love. Five. Five things. One, two, three, four, five…

 

 

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    16 Comments
    1. S #

      I read this and think of “all the things we do” in our lives, the things we want to learn, and fill ourselves up with. And ultimately, why? And then, here reading your offering, sitting with each of our experiences; your father’s, yours as you watch your father, ours – as we watch you. I can feel a clinical disconnection on my part, just observing for the sake of being witness to the process. I can feel the burning in my chest when I try to let the disconnect drop. My heart is reaching out for you in this space, helping to hold the container.

      March 21, 2013
    2. Deda #

      I know, Dunya. I KNOW. I cannot tally the hours spent helping my aunt do word search puzzles to recover ground left decimated by aphasia. Her first and worst stroke, and every minor one thereafter for the next five years until her last, affected her speech center. But the exercises worked. We worked hard – she would be exhausted after doing word puzzles and other exercises. But she did recover ground. Sometimes noticeably from day to day, but never completely. It was one step forward and three steps back.
      It is a difficult thing to witness, as I know it was difficult for Aunt De to bear, being the bright articulate, confident woman she had been. Humbling for both of us. But what is there for us to do but bear it? Love to you and your daddy.

      March 21, 2013
    3. karleen #

      Well, a wonderful look at this time of life…..the leaving of it, which is so very interesting. We all have to do it, leave, and so very few want to or think about what that might look like. What would it mean to dance toward it without destruction but in faith? What does it mean to leave with grace?

      A book I recommend: Naomi Remen’s “My Grandfather’s Blessings”…..all about loss, letting go, what else is there, keeping on…..

      Love to you and your father…..he is singularly blessed and you’re part of that……….

      March 21, 2013
    4. Thank you, All, for your loving reach to me. The terror in being witness and assistant is, as you point out Karleen, that we all face an end of life. It may not be easy. It probably won’t be…And no one is immune. This witnessing is perhaps training wheels…

      March 21, 2013
    5. Anastasia Blaisdell #

      Thank you so much, Dunya, for opening your life and heart to us all, to share but a glimpse of what you must be feeing inside…and your father…and your mother…As I remember hearing Ram Dass say once, “The Horrible Beauty of it All..”….That always stuck with me and comes back from time to time because so much in life, especially in these raw moments, is like a knifes edge, cutting into the Truth of existence for us to see and feel, and then the pain that that brings to us wee, tender humans..ah, I could cry for you right now, and your dad, and your mom…I’m sending you so much Love and Affection right now…Thank you for who you are and all you bring to us all, especially to your dad right now…

      March 21, 2013
    6. Kathy Hamilton #

      The ripened fruit, when it falls, feeds the seed. It’s damaged body the first home of a realized dream. Loosed, the power they share, passes between them. There is the truth, then.

      March 22, 2013
    7. Edie Clark #

      Dearest cousin Diane:

      My eyes are filled with tears and my heart with love for you, Mac, Joan, David, Clara and their girls. I adore you all. I am remembering our wonderful sails with Mac in Maine and our glorious, imaginative and laughter-filled conversations — and hoping he can remember them, too. I am praying that the peace of his God will come to him and to all of you, in your own way, that he may no longer fear death. I also pray that he will heal to the point when he can tell you he loves you, though I know you already know that. Surely Mac has felt your love so strong and sure in these visits. Thank you for being there.

      Edie

      March 22, 2013
    8. Dearest Friend Dunya,
      As I finally get to reading your post I feel regret that I wasn’t able to sooner. I thank you so much for writing this, so many are afraid of what we can not escape. The tears and feelings of great love for you and your family (though I never really met them) is strong. Your writing is beautiful, full of love even though there is pain and frustration when someone you love faces the challenge of coming back from a stroke. The things written by other friends also full of love for you…. special indeed…
      Carly

      March 24, 2013
    9. Nancy-Laurel Pettersen #

      Thank you for sharing your father with us. What a gift to feel so connected to someone I’ve never met. And the little details mattering so much, the edges of rugs, the small dark corners. In your way you’ve woven us into the love between you and your parents. Thank you, Dunya.

      March 25, 2013
    10. Laurienne Singer #

      Oh My Dunya, I had not read your blog when we spoke. So very deeply touching, so moving. What an incredible journey being in this life together. Thank you so for sharing your reality right now, for caring , for being and still moving and sharing with us. I love you and send you the deepest blessings as you witness this transformation of your parents, and as you undergo this profound shifting shape of being.
      Heartfelt Love to you and yours.

      March 26, 2013
    11. Natalie Domingue #

      I posted this in FB, but I felt it was applicable here as well…sending you much lovelovelove!!!

      Committing to “just agreeing to show up” with myself daily… has changed my life … There have been sooo many changes, in all my “bodies” since this journey began. “Move with Me” synchronistically aligned with 2 other monthly commitments that started on the same day and will come to a completion on the same day, Easter….but these meetings, rituals and exercises, although completed, will not end…they are woven inside me and they are alive as a part of me, now…I feel myself expanding …there is no end …What a KNOWING! thank you, teacher , friend and healer…This week I dance with you and for you. Because You are woven into your movements, the energy of “You” is a part of Me now…and I have swallowed themwhole, taken them in and made them my own ..I read your latest blog, about your journey with your father, and wondered how I could convey what I felt and was thinking…So, at this time in your life, I dance you strength and peace and “figure 8” the woven threads of energy back to you… your gift to me is now my gift to you…till next we meet…

      March 27, 2013
    12. Reading all of these beautiful writings of support which I have been quietly, hungrily doing, is truly a stunning opening of trust for me. The rich human beauty in the horrible beauty…I bow in gratitude. To you. To the falling chips that have offered me, in the rubble, sparkling jewels.

      March 27, 2013
    13. Dee #

      I just learned about this disaster, Dear Dunya, and I am with you completely. I adored my father too, and still cannot grasp that he is gone these 16 years. Suffering congestive heart failure, he lingered in that nether-world between wake and sleep, life and death, for many months, not comprehending why he couldn’t just get up and go outside to tend his beautiful garden in central France, but instead was locked by gravity and weakness to a guest room bed in my home in Georgia.

      He and I went through this inevitable transition with grace, I believe, but with a load of the deepest pain and heartache imaginable. It still persists today.

      I wish I could be with you now, to help take some of the burden away. Moving through this phase will change you, as it changes us all, but it will only make you more beautiful ultimately. I love you, Dianne, and will be thinking of you constantly. I’ll be here when you’re ready. xxoo

      March 28, 2013
    14. Very moving Dunya, I’m reading this as I prepare to go visit family this weekend, to gather around and talk to my Dad. They suspect he has alzheimer’s; he’s brilliant, has many more plans for life and is 76. Makes each moment of awareness very special doesn’t it.

      March 29, 2013
    15. Deb, it does. The end zone is quite dramatic. Watching both my father’s loss of language and my mother’s mid-stage dementia has made me more and more grateful for choosing a Path of sensory and interior non-mind joys. I don’t know if people lose those as well with dementia, but I think the feel of the sun, the smell of spring, the birds still bring joy even as thoughts and talking are forcibly torn away. Perhaps an orientation to, and comfort and pleasure in, fundamental experiences can soften the fear and frustration at the end. Perhaps there can at least be relaxation. I wish both my parents ease and peace soon, though they are each quite upended by this crisis. My mother, just for your info, is better able to feel relaxation. She is often happy. I understand that can be true in dementia. Best love to you in your family visit.

      March 29, 2013

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