These are vague thoughts, early first draft notes for something deeper that’s been asking to emerge. Threads of experience asking to be woven into something new.
So much has happened – more than I will ever be able to express. It’s all internal. An expansion – a dive that I’ve taken into an etheric world of shadow and light where people all over the globe are staring at screens, blinking: Hello…
Is this good for me?
I don’t even know. I crawl through the twisting rooms and passages of the Internet- architecture of illusion and mirror – where I feel more real, more found, more seen, than at any other time in my life. How can this be? Is it the anonymity? The river of voices murmuring, like an invitation…
Hello…
At the same time, in a universe just 20 miles away, my mother stares at the television – a box of light she has always despised – ignoring the sunlit painting studio where her work sits, waiting for her, just ten feet away. Ten months since the open-heart surgery shattered her mind, my mother shuffles to her kitchen, up the long hallway tethered to an oxygen tube that follows her like a green snake, from room to room.
She is starving for stories of the real world, the world outside the apartment where her weakness and a cascade of illnesses, have confined her far too long. When I visit, she tells me about her childhood, in painstaking, vivid detail. She asks me about my life but doesn’t seem interested. She can’t relate to my stories about websites, Twitter, a friend she’s never met with whom I talk every day.
I have stopped being hurt by this.
My mother is on a journey toward something important – something that she hid a long time ago, in one of those dim passages of memory.
And here is one of those threads. One of those vague illuminations, asking me to follow it into the maze: How is this world that I crawl through here, encountering people in Minnesota, Florida, Australia, England different from the rooms that my parents are crawling through as they, sitting in separate houses – my father in a nursing home, my mother is her apartment – sort through their memories, revisiting, reorganizing them like index cards?
And how does this relate to the birth and death of stars – the ones that I read about in the links that I follow?
Today, a woman told me about the expanders that were placed under the skin of her chest to make room for the implants that would, when her skin had expanded enough, replace the breasts that she’d chosen to remove, just in case.
The death and birth of stars
And of course, this is none of my business but this kind of thing sounds so insane to me that I laugh out loud. I don’t mean to be insulting – and I understand WHY women are doing this – the new gene that is “predictive” of breast cancer, the ticking time bomb. Still, I couldn’t help it: I laughed. Because how is this thing gonna work now? Will we cut off every piece of the body that MIGHT get sick … just in case? How does living like this, turning our bodies into enemies, living in this world of fear, make us feel safer?
Oh, turn on the damn light!
Five days earlier, I fed my father pureed lasagna and a bottle of mocha Frappuccino that I’d purchased a week before and left in the top drawer of his dresser. He told me he’d been longing for it all week but had not, until I came, been willing to request assistance.
He could not open the bottle’s twist off lid, could not lift the bottle from the drawer; could not, i think now, even open the drawer by himself. And, because he doesn’t want to telegraph his increasing disability – and the increased vulnerability it would bring if staff knew, he does not ask for the help he needs.
“Each day,” he told me. “I lose a little function…. but,” he continued, “I am finding great comfort in books. They are taking me places I never knew of.”
All of this is all jumbled together inside of me, weaving and weaving – having its way with my heart
And now, I have a question: What do we mean when we call something real, when we call something else, imagination, or memory? How is this world of touching things, of feeling this slash of sunlight on my arm as I type, different from my father’s world of written experience, or my mother’s world of vivid memory?
Oddly, strangely, my father and my mother, who have not seen one another for months, have both told me recently, “There’s a way that I never quite felt real.”
“All you do is work,” my daughter said. “You don’t live.”
When I asked her to explain, she said, “You are thinking your life, observing your life and writing all the time. But you are not living.”
Ah, but I am
I am just doing it in here, in this back room around the corner. (The room where I sit, surrounded by these heaps and heaps of straw, weaving…
Last month I told my husband, “I am not the same person any more.
“I want a different home, a different way of living. You can come with me if you want to, if you can; and I’d love it if you would. But if you can’t or won’t move out of this clutter, out of this mess, I am going anyway. A white house is calling to me – a house with screens in the windows and a garden and a bedroom. I can see it. I have walked its hallways and rooms. It’s time to inhabit them.”
He smiled and said, “I am going to surprise you now. I am going to answer your new voice in a new way.” And then he did, surprise me, I mean.
Anxiety, spirituality, perfectionism.
Things are in motion. Things are moving all around. Last summer, my yoga teacher told us the story of her 25-year-old nephew, a beautiful spirt who had lived his brief life without complaint – as a teacher of love, unconditional, bright and bursting love – even though he had Cerebral Palsy, even though his body didn’t work like everyone else’s did. A young man who’d literally died of joy – and a seizure – at an amusement park. As I listened, I remembered my promise to God (and to myself) to go and visit my father (who also has Cerebral Palsy) at the nursing home every evening at 4:30, to just drop in and, you know, feed him, because he can no longer feed himself.
And it broke me apart; it scattered me like dust across the day. Tears collected in the back of my throat and I thought: I cannot burst into flames right here in front of everyone. I will just quietly roll up my yoga mat and walk through the door and up the hill to my car. I will unlock it and climb in and close the door.
And then I will cry.
But my yoga teacher said, “Lie in Shabasana,” and though she did not say it, I heard: Stay. Don’t run from this. Don’t turn it into an excuse or some pathology – a migraine, an invasive blood disease – or some philosophical principle. (“His suffering is his own”) so you can push it away. Stay, she offered. Lie down while the class moves around you. Lie down on your green sticky mat with its tiny splash of white paint. Stay.
So I stayed. The class moved around me – through Warrior pose and Warrior Two; through Triangle and Artichindrasana, my favorite pose – the one where Suzy sometimes says, “Shine, shine out like the sun!”
She didn’t say it then but I heard it.
I lay on my yoga mat and let myself think about my father, who has struggled with CP all of his life and has not – was he supposed to? – taught everyone around him about unconditional love. Though he has turned his big fat lemon to lemonade. Or so it looked. Amazing, people were always saying, seeing him. So special.
“That’s their perspective,” Dad scoffs. “Don’t put that shit on me.
These past five years as the CP and its new pal, spinal stenosis, have worked on him, twisting his spine into a pretzel, Dad has changed. At first he was fierce, fighting with the team who evaluated his case, who stuck him in a ward for hopeless cases, assuming, because his body was bent over, that he had Alzheimer’s and getting himself placed in a beautiful, carpeted private room.
As the former Director of Self Advocacy programs for United Cerebral Palsy, knowing how important it is to keep pushing, keep asking, he’s reached out to administration, to social workers, to medical and support staff for the support that he needs. But this last year, he’s gone quiet.
“For me, it’s been like this: I just wanted to be normal, to get along, to be able to walk down the street and no one stared; no one nodded or looked away or stared at me in that way… I just wanted to fit in. That and I really wanted to play professional baseball – and later, to drive a cab.”
And then, last Friday night, after I’d made the hour-long drive to deliver that bottle of Frappuccino – Dad told me, “I can’t feed myself any more – and I’m feeling anxious because I am going to become, soon, one of the more needy residents and I’ve seen how they are treated and I am putting that off for as long as I can.”
That’s when, on the way home, I made that promise. I knew better than to promise him, “They never have to know. I’ll come back and feed you every night.” After three years, I know that I’d never live up to that. But I couldn’t help it. On the way home, out it came. And then, lying on my yoga mat, I saw how every day since then, five so far, I had broken that promise because I was keeping a different promise, to myself.
A promise to walk through this room that I find myself in and see, hear, smell and taste what is here. To live to live to live. A promise to take the gifts that both my parents have given to me and use them to shift the whole family toward FEELING, toward living, toward life.
Then, I stood up and rejoined the class and did Legs Up the Wall, instead of Shoulder Stand, and that was enough.






{ 17 comments… read them below or add one }
Astounding, Amy. You are embarking on such a journey…and have managed to express it so eloquently and beautifully. My heart aches for you, for your parents, for the proper balance you must struggle to find.
I wish I had more to say but the Vicodin is clouding my mind. You are such an incredible person, Amy. With so much to say and you say it in such a way that I’m right there in the moment with you.
love.
Ah, thank you, Erin. Takes one (good writer) to know one! Glad you’re in this moment with me.
Amy, you’ve done it again. Moved me to tears, that is. Tears of heartbreaking joy at this journey you’re on, and the incredible selflessness you’re expressing by sharing it with us. I read every single post you write. I always want to leave a comment, yet most times I don’t because at that moment in time my words sound clunky, awkward, clanging. No match for the poetic, soul-infused words that flow from your heart/mind/hands/fingers. You are amazing, Amy Oscar. You are an angel sent to earth to help us all see inside and past and beyond and through. You have touched my life in ways you will never know. Thank you, dear friend, for giving so much of yourself to me.
Beautiful, Amy. Truly gorgeous display of words and heart!
My heart hears the voice that says “stay with it” from time to time.
Thank you for finding the junction on this plane for our paths to cross! You are such an angel in my life! Thank you for sharing this. Much love and peace!
Nicole, you (and Dana, you) have no idea how you bless MY life. Thank you for stopping by today.
I needed this today. Stepping across the threshold myself. Said some of those same words. It’s hard. It’s life in all of its beautiful anguish.
Lovely. Thank you.
Wait. There’s more. I hit the button to retweet and that’s when I noticed the title…Perfection. Brilliant. Life is so crazy and so messy and so ridiculous and despite all of that, the biggest lesson to learn is that it’s all Perfect. Not good, not bad. Perfect. Exactly as it should be. That is the message I so needed to hear today. I am struggling with accepting the perfection of it all right now. It doesn’t feel perfect. It feels crazy and pointless. It feels as if I’ll never get my own version of the white house. I want to run away. Your post has helped me stay for one more day. That’s enough.
Please let me know what happens when you stay. It’s powerful medicine.
So many thoughts and accompanying emotions going thru me. You express yourself beautifully.
With my parents, my mom died 6 months after being diagnosed with lung cancer and she wasn’t in need of extensive care until the last two weeks of her life. My dad took care of her with the help of hospice volunteers. 17 years later my dad was still on his own, working full time into his 80′s. He decided to quit working because he felt like he could no longer do the level of job HE wanted to do,
Then he was diagnosed with leukemia. Although my brother and I helped, he was his primary caregiver – driving himself to the blood transfusion. I was the liason for the medical community – there’s many potential posts there. One day when he was complaining vociferously about the transfusions I told him he didn’t have to do them – it was his choice. He didn’t understand, “but the doctor said I had to.”
And you can refuse.
“But then I’ll die.”
Exactly, and this is a case where you can choose to let yourself die.
A few days went by and he chose to stop the transfusions. Only a little over a week until he died as an in-patient in hospice. I have no idea why I told you all that, when I started
I was heading somewhere but…
So what’s real? Did you and I just have a conversation and live life? I think so. I missed my parents this weekend, and it’s been 5 yrs since my dad died and over 20 since my mom died. Guess I needed your post. Thanks Amy.
Cherry, we did just have a conversation – about life.
What a beautiful story. Thank you so much for sharing it here. I’ve been having a conversation with my parents about dying lately. For me, because I know that dying is just another life transition, and that we emerge into non-physical realm as light itself, free of our earthly burdens, it’s hard to talk about it as anything but joyous. It’s the earth stuff I grapple with – the suffering, the endless medical interventions, the drugs that rob people of their quality of life.
Hi Amy.
I’m not quite sure how I’m feeling right now. Your words and message seem to go far deeper than my own capacity to go with them. And yet, somewhere inside – a connection is always made; perhaps a seed is planted, to blossom when the information I cannot wrap my mind entirely around in this moment will be of extreme significance and lead me with Love to where I must go, next.
You are like Air ~ so necessary, so present, so ephemeral. Thank you for sharing your wisdom out loud …
Seeds are good.
Thanks for listening…
Namaste.
Your father and the Frappuccino. His fight to not be one of the needy ones. His clarity. “Don’t put that shit on me.” And your mom, with the artist’s studio ten feet away. Your journey. Your voice. Your honesty. You leave me breathless.
It has taken me 20 minutes to write this comment, because I had to get my Mom something to drink. Then lift her up off the couch and slowly walk her into the bathroom. And then help with what needed to be done in there. We are on Day 3 of having her at our house because her birthday was Saturday and this is what makes her happiest (me, too). I am grateful to have her still here. Yet, I am so tired and unbelievably physically beat from all of it. Like you, no matter how much I do (and it’s a lot) I am mocked by the broken promises. “I’ll call her every morning.” “I’ll go to exercise class with her.” “I’ll eat dinner there at least once a week.” Here’s hoping that we’ll both remember the good, and know that it is all perfection.
Thank you for having the courage to write about this, and to do it so beautifully. I wanted to write about how this journey has been for us (her and me) to give an update on Saturday. But I couldn’t even think of where to begin. Maybe, in time, I’ll get there.
I’m finding it deeply moving to read your story, and Cherry’s. I had no idea this post would spark people to share their own journeys with caring for aging parents. What blessed work you are doing, Kat. Every time I visit my mom in that apartment, which is way too big for her, I want to bring her home to my house. I have a feeling this is in my future, too.
Thank you for sharing your heart so openly, so beautifully, as you always do.
Stay. Don’t run from this.
Big/hard lessons – (sort of – because they are also, from another perspective, easy/one-step-at-a-time lessons) and so beautifully shared. Thank you, Amy – for your vulnerability and Light!