Two years ago I woke up numb from the waist down. It took 6 weeks to get a diagnosis, which was a long time of not knowing. I decided since I couldn’t have the “real” answer right away, I would spend my not-knowing time imagining the most magical explanation I could think of. I decided that this must be how it feels to transform into a mermaid! So any time I felt anxious or compelled to Google worst case scenarios, instead I imagined myself perched on a rock in the ocean with a glimmering mermaid tail, which made me smile every time. It ended up being MS, which was the worst case scenario I could have imagined. But I still feel so grateful for those 6 weeks I spent immersing myself in a more magical unknown. And you know? It turns out the diagnosis wasn’t as scary as I feared it would be and has come with unique, unexpected gifts.
Thank you for the inspiration to share! And for the beautiful community you’ve created here. I felt so held by your people in these comments. Worlds of love back at you.
My child-like curiosity turns MS into Mermaid Supreme...the diagnosis is as close to being a mermaid as adulting allows. Not to diminish the reality, but to keep the magic surrounding it. Becky, thank you for sharing, I hold you in the Light.
Becky, I find your imaginative approach to a difficult situation to be truly uplifting. How has your perspective and creativity helped you navigate life with MS since your diagnosis?
Thank you for the kind words! One of the magical things about my MS diagnosis is the way it's encouraged me to celebrate all of my senses. Every year on the anniversary of my symptoms onset I celebrate it as a personal holiday because I could have lost so much more, and before today's miracle medicines I likely *would* have lost much more eventually. I made a little video about it this year: https://www.instagram.com/p/C79qnBtuF1v/
It has also given me permission to speak up for what I need because if I don't, my body will truly suffer. It's meant unlearning a lot of my people pleasing tendencies.
Thank you for sharing this! I’ll remember it the next time I’m sitting in a potentially scary not-knowing. I’m sorry your worst-case scenario came to pass, and glad it has brought unexpected gifts. I had the same experience when I had acute leukemia (and I’m still here 10 years later, grateful).
Becky I'm in SO love with this!!! I wish I had this same creative sense of wonder when I was numb all around my middle, hands, and feet. But you are ALSO right that MS turned out to be my own special gift which encouraged me to work at being more healthy than I ever would become NOT having MS. I will think of you the next time a symptom flares up. What a gift you are!!
Hi MS buddy!! 🤗 Truly, it has been an eye-opening and empowering experience in a lot of ways… like when my body is telling me it’s too hot or needs rest I speak up for her instead of just making myself uncomfortable for fear of displeasing someone else. It’s really forced me to confront my people-pleasing tendencies among so many other things!
HELLO!! GUH I have so much to learn (and it pains me that my Dx was ten years ago this Dec!!) But as a people-pleaser extraordinaire, it truly takes a lifetime to decouple from that modus operandi. I'm getting there! Coincidentally I got a perfect score on MRIs today of all days, so I'm taking you in this comment section as a good omen all around!
This is so beautiful, Becky! Thank you for sharing. I had a weirdly opposite experience once. I was having some numbness and other issues and went to the neurologist, and he said "I hate to say this, but all your symptoms point to MS." It took 8 weeks to do all the testing and find out I didn't have MS after all (just a bunch of very bulging discs). For 8 weeks, though, I lived in the false certainty that I had MS. I decided that my only path forward was absolute presence. When I say I decided this, I don't mean it was a rational decision . . . it's just what happened. I felt like even if I were to cognitively decline down the road and lose access to the past or future, if I could be always in the unfolding now, that wouldn't be so terrible. Looking back, I see now that this experience way back in 2013 went a long ways toward preparing me for developing long Covid in 2020. I have ongoing issues with memory and brain fog and have no way of knowing what that will mean for my cognition as I age, but in the present moment, I'm always okay, and so I try to live my life there. And that's been an incredible gift!
Thank you for sharing this, Lisa! Isn't amazing how these reactions just rise up out of us sometimes?? What a gift when it happens! Sending much love to you. <3
As a mama I had this deep, abiding, full faith knowing that if death should ever come for my beloved & only child, that my heart would simply stop beating— I had absolute trust in this, each time I feared the worst happening to him (which I think mamas do, believing if we worry enough, the bad things won’t happen, our worry will outsmart danger!), I was assuaged— I didn’t have to consider what I would do or how I would survive—because I just knew that I would cease to exist. It would be handled by the same force that created the love I had for him.
And then— it happened— that worst thing possible. He died. At 18, unexpectedly, closing in on 10 yrs ago now.
And I didn’t.
This has left me without any certainty at all of anything, at all. I am fascinated by the mystery at work within our lives, thoughts, assurances— even our survival. I have utterly surrendered to the not knowing/not being able to predict or prepare, understand or control. The world feels utterly upside down from what “I knew” since the day the most beloved boy I know left this realm— and I am left with my mouth agape in wild wonder of everything because I was so wrong about that thing.
Oh mama, I’m so sorry the worst thing possible happened in your life. I too am surviving this worst thing in the world, just days away now from the first July 28th that my beloved son is no longer in this realm. Wonder and curiosity have been a native language in raising my little family. I’m now, amidst it all, pondering so many new questions that I know are unanswerable. The curiosity sits deeply within, wrapped around the heartbreak we didn’t know we could survive. I experience unexplainable curiouswonder moments and occurrences and ask how can this be, by what magic or grace or mystery is this spark lighting this moment? I appreciate the questions that accompany me, and I keep asking them, silently and also aloud to my beautiful Stephen, aloud to the universe….knowing there are no answers, wanting to have the answers, making peace with this new realm of curiosity.
Christina, I am so sorry for the loss of your son. I know this isn't the "right" thing to say, but your comment is something I think that will stay with me for a long time. My son is 15 and is truly what keeps me going in life right now. I think often about exactly what you wrote: that if I lost him I would shrivel up and my heart would stop beating. When he was a toddler (he doesn't remember this) he must have had a nightmare because he came to the side of my bed and said, "mama....if one of us ever goes to heaven first, the other one can just put a spear into our belly so we can go to heaven together," and that has tormented me for 11 years now. We are so closely woven together with love and the deepest understanding that I've ever had with another person, that I honestly can't imagine living without him. But I will say, thoughts like this that I have all the time are not great for me (or him, even though he doesn't know I'm having them). I think it has made me very hyper aware of anything that could harm him (aka over the top helicopter mom stuff going on) or go wrong in his life whatsoever. Panic over any allergy attack he has, etc. It's not the ideal way to do things, I know, but also...worry was the language of love in my family of origin, so I speak it well!
I am fortunate that my beloved children are both alive and well. I feel I understand exactly what you describe in the pre- time. I could only continue on by tricking myself or controlling where I allowed my brain to look.
Thank you so much for saying this here to us now. It’s true. We do think that if we face the monster in our mind head on, the tragedies won’t come for us.
Thank you for being a Light.
Your son chose you for his short contract on earth for a reason. 🐞
Our son Max died 16 years ago. His passing was both the worst AND biggest gift in my life. Of course we wished it had never happened but when I finally (after years) learned to accept "what is" I allowed the most amazing gifts to occur within myself. Love, grace, forgiveness, growth, vulnerability...all of these feelings in me grew enormously because I had lost my son, my sun. I am forever grateful to Max and to the Universe for these life-changing gifts.
Your writing here reminded me of one of my favorite book passages of all time.
In the book, “Lovingkindness,” Sharon Salzberg wrote, “a modern astronomical view, says that everything in the universe is moving uniformly away from everything else in all directions in space, so that there is no centerpoint in the cosmos at all. We live with no fixed reference point. From one perspective, this understanding produces the desolate feeling that there is no home. But from another perspective, this realization shows us directly that every point is home. We are free; we do not need to fix on a single center for refuge or safety. This is love, this is happiness, where our refuge is unbounded, and we are always at home. As the Buddha said, 'they abide in peace who do not abide anywhere.'"
Thank you for sharing this quote! Sharon Salzberg was my first Buddhist teacher, and I remember when my friend first loaned me this book and just holding it in my hand brought me a sense of rightness before I had read a word.
Brandie, I'm so grateful that you posted this passage from one of my favorite books. Long ago read, so the passage was long ago forgotten. It's just beautiful:)
I have been struggling with this concept of leaning into curiosity over certainty recently. My mom died on Sunday after being diagnosed with a severe and rare cancer only 3 weeks ago. It has been such a shock and I’m heartbroken. I couldn’t imagine this reality a month ago. My only comfort is that I may see her again one day or that she is watching over me. But I’m struggling with the fact that I don’t know this for certain. No one knows what happens after death. Thank you for this, Andrea. Your words have always brought me comfort but especially these last few weeks. I’m going to try to channel my childlike wonder, curiosity, and hope ❤️
Such compassion for your journey that holds such love and grief. My mom passed a long time ago, I was a 25 and didn't know what do with such depth of grief. Wonder can be present in this space, even if it feels so far away. I remember not being able to sleep one night and, like a child, putting a flashlight to my skin staring at the veins in my hands wondering what made me human. And when I found her x-rays in a stack of papers, examining them for hours. I couldn't look away. Such hope that as your journey unfolds, these tiny spaces of wonder hint in between the waves of grief.
Ah, but you are a part of your Mom just as she was a part of you, whether genetically and/or by the osmosis of having been together. I tell my children they will never be rid of me, mostly a good thing, sometimes frustrating when they find themselves making the same mistakes I have. Peace to you Mickey ❤️
Oh Mickey. My Mom had co-habited really well with her cancer for 16 years, and when that shifted she went from vital and alive to dead in about 3 weeks, as well. She passed away 2 months ago. It was fast and shocking and world spinning and life altering and probably will be for a long while. If it's any consolation, 5 weeks further out from you I can breathe, sleep, eat and work and while I cry about something to do with her every day, it's not all day and the memories are sweet. The poem Wait, by Galway Kinnell, has helped a lot. Life does become interesting again. Curiosity does return and wonder, too. Small, particular joys. The taste of food. Clouds. Touch. Music. The pollen of milkweed saturating the backs and legs of the bees feasting upon them. I feel my mother close to me often, and I am more easily able to sit in the unknown and be grateful for our love and connection, which still exists in all my cells, my heart, my mind. Missing her feels like a wonderful gift now. It is a direct path to love. I wish you ease, and peace and love.
Thank you, Nancy. This is beautiful and comforting for my future. Today was my mom’s birthday and was a particularly hard one. I needed to hear these words. I wish you peace, ease, and love as well.
Oh Mickey, my heart goes out to you. My mother died suddenly as well and I've spent so much time looking for her. Now, after many years I allow myself to live in wonder and curiosity. I see her in the crows, in the glints of light, the poems that come to me and the memories where we both live. Grief does not end, but it transforms. So much love to you!
Yes. I used to be so ambitious but recently it’s been sliding away from me and I don’t even miss it. It’s disorienting but also freeing. Curiosity and wonder are the best substitutes for striving.
I have found that as I stopped living from my hyperachiever driving my inner horses, the tremendous grief inside me continues its rise. It IS disorienting. In place of goals is a diffuse experience, I’m the ripples from a stone thrown in a pond. They go their own way, take me to someplace that takes direction from something I’m just beginning to understand. One thing I notice is that that thing directing the ripples knows what’s in my heart and strips away what’s misaligned.
Thank you for all of this… writing it and sharing your perspective.
When my daughter died six hours after she was born ten years ago, I found myself needing answers about/for everything… what I was going through it for, why she was sick, what was the point of her being born only to die so soon, where did she go after her physical body failed her, did she know me, did I know her? And I thought I found answers, but I came to realize ten years out that my answers were a substitute for the grief of uncertainty and the uncertainty of grief that I didn’t want to go through, which is when a sort of personal spiritual crisis for me began. Now I realize I never really asked questions after she died. I just sort of fast-tracked right to the answers, and like you said, some of those answers ended up being like clouds.
Now I try to live by the motto “question everything,” and I gravitate towards people with more questions than answers (or at least as many questions as answers). And I try to quiet the endless chatter this world (and my own mind) can sometimes be so so that I can hopefully better recognize what’s true. I’ve been trying to learn that I don’t always have to know the “why” of certain things, and that perhaps I am called only to observe the things, rather than understand them.
I have been reading a lot about wonder lately, most recently Herman Hesse’s… well, wonder-ful thoughts about it. So this just serendipitously falls right in with the theme I am seemingly being shown these days.
I recently found a conversation I had with my son when he was about six. I had written it down, and I am glad I did. He asked me, “Mama, what if your shadow was shaped like a chair?” I don’t remember asking imaginative questions like that as a child. At fifty-two, I am learning it’s not too late to start. ✨
I remember the same feeling in childhood, so insatiably curious about everything. I also remember the difficulty of communicating my wonderings and experiences, many of which were cosmological in nature (poor little double Pisces). I have a vivid memory of eating lunch with my mom at a shrimp shack in Galveston, I was maybe 9 years old, eating a poboy and asking her something about the nature of the universe and getting a blank stare in return. I was so disappointed that this person who was everything to me wasn’t also fascinated by this! I soon repressed almost all of my curiosity in an effort to survive the chaos of my family and being a queer kid. I’m so grateful it returned later in life, and I’ve given it full rein now! I’m much more comfortable with brief glimpses of truth than answers these days.
Adrienne, your childhood curiosity and the experience of feeling misunderstood are so relatable. It's heartbreaking when our deep questions aren't met with the same enthusiasm by those we look up to. The fact that you repressed your curiosity to navigate your family chaos and identity struggles speaks volumes about your resilience.
I find that it's wonderful to hear that your curiosity has returned and you’ve embraced it fully. Being comfortable with glimpses of truth rather than concrete answers is a beautiful way to approach life. Your journey from repression to embracing your true self is inspiring. Thank you for sharing your story! :))
Thank you so much for your kind and thoughtful response! I didn’t mention that this return to wonder was catalyzed, like Andrea’s, by a protracted health crisis (acute leukemia and long term side effects of successful treatment) that turned my adult life upside down and forced me to stop working for money. I highly recommend reactivating curiosity and wonder without waiting for such a dramatic wake-up call!
This is a deeply beautiful piece, Andrea. Thank you.
I suspect, from your words, and from my own experience, and from other commenters, that the portal back to this place of wonder and curiosity tends to come through the things that we would never choose to experience, but which come to us anyway. My own portal was undoubtedly a chronic illness, which I'm now some 7 years into.
My moments of wonder now mostly seen to come from the beyond-human world. Just over a year ago, sitting watching the sand martins flit aerobatically over the local river at a beloved urban wild space, I found myself thinking: "all of those things I thought I'd achieved in my life - they mean nothing. But here, now, feeling such love both for and from this place, I could die happy." Moments like that mean everything. Make me feel like I'm Home.
Love this, Andrea! It’s so beautifully articulated. A letting go of the need to be right & a return to our childhood curiosity & awe. A rewilding of sorts. 🌿🥰
It’s interesting to me that grief and wonder sometimes walk together hand in hand. Have you noticed that? My times of great loss and grief have been held in love by the wonder and magic of the Love that holds us all. Sometimes it takes me a long time to feel into that Love but it’s always there whispering in my soul reminding me that even in this dark time of life there is joy to be had.
Hi! New subscriber with a visual impairment. Will you consider adding alt text image description to the pictures? Very easy, very nice; bet I am not the only one reading with a screenreader :) Thank you for your awesome words!
From what I recall without scrolling up and losing your comment in the sea, the first photo displays Andrea with their back to the camera, holding a small dog who is looking in our direction over Andrea’s shoulder. I believe this was around sunset or sunrise- the sky full of rich colors like reds and orange.
The closing images are all original works of poetry by Andrea.
To remain curious in the face of uncertainty reveals your heart as a seeker. How much more there is to learn when I don't have all the answers and aren't even sure of the questions anymore.
One day 10 years ago I was walking into a meeting when I got a call and was told that my beautiful, brilliant daughter had been struck by a military truck in Morocco where she had been studying abroad. All we knew was that she had a terrible brain injury ("massive axonal damage", "brain surgery"). We didn't know if she would live long enough for us to get to her side. Certainty cracked open that day and I found myself screaming. I kept screaming until even the deepest certainties were poured out of me and nothing was left.
No recognizable patterns or past knowing were left. No reassuring certainties about the future. I remember thinking, "this is the moment when everything changes", and it was. All I had to hold on to were sensations of the moment. I was both lost in grief and open to a kind of wonder I hadn't known since before my memory began. At first, the change was so profound I felt a strange loss of equilibrium. It's never left me, though it has settled.
Syd lived through three brain surgeries (two in a rather primitive public hospital in Rabat), a life-flight to London, numerous infections, coma, and the process of rehabilitation. An indomitable soul, she overcame all odds and went on to get her Ph.D. in neuroscience last summer, has run 7 marathons since her injury, and was just married to a wonderful guy. But I learned that we don't get to expect anything. None of that was expected. I learned also that joy can be profound and dizzying.
Zen study both before and after her injury have allowed me to use this experience as a springboard to access many more moments of beauty than I ever imagined existed in the world. Like the kind generosity of people we knew (and so many strangers !). Cards, emails, WhatsApp messages etc conveyed so many messages of love that I felt held upright by it's force as I navigated the vast not-knowing. Maybe the only certainty I gained from the experience is that there is just so much love in the world. It's everywhere. And there are so many moments of joy-drenched sensation, if we can pause to see them. The journey to her recovery was terrifying and exhausting, and these moments were there through all of it and have remained.
Thank you, Andrea. Your words leave me wondering, in all the best ways.
For me, having (or looking for/insisting on) answers usually means I am holding too much fear. Truth feels different. It's expansive and usually quieter. Less words are attached to it. Not as noisy as "having the answer."
I love this and everything you write on this and other subjects. Thank you. That sense of awe is what is getting me through a series of challenges in recent years (our house burning down suddenly, almost taking my family with it, was the least of it). I'm an artist and gave a TED talk on a photo series, "Locked Down Looking Up," that has a lot in common with what you have said about facts. It's only 6 minutes long, <go.ted.com/dorismitsch> but if you don't have time for that, it's summed up pretty well in the quote I ended it with, from Jarod K. Anderson's poetry: "Bats can hear shapes. Plants can eat light. Bees can dance maps. We can hold all these ideas at once, and feel both heavy and weightless with the absurd beauty of it all." Thank you again.
Thank you! I recently gave another talk (about a series of photos of my burnt house, but more generally about grief), and quoted you, from "The Snow is Falling", and also ended the talk with another quote that I attributed to you, but which I couldn't find in writing anywhere when I looked for it, so I thought it might have been something you said in a podcast or social-media post: "Pray for what you have." Do I have that right? Or did I paraphrase something else that you said or wrote? Either way, thank you for that, too.
I used to adapt the saying “love is the only answer,” but perhaps it’s more accurate to say “love is the only truth.” Maybe the difference between truth and an answer is that the first is what we seek but the latter is what we get.
My children have helped me stay curious for a lot longer than I imagine I would have in real life. I went from being a theatre maker where imagination and curiosity make the magic to being a parent which rely on the same tool bag.
My personal anecdote about curiosity is also tied in with my cancer journey. I was diagnosed with stage III breast cancer. I decided to see what happens if I didn’t follow standard of care. I was told it was imperative to start chemo and radiation, and instead I wondered off into the uncharted waters of holistic healing. Most people don’t go there until its last resort. I was curious to see what happens if it’s my chosen option. I think my gamble is paying off.
Wishing you many curiosities ahead of you, dear Andrea. May the answers be sublime, but the truths profound.
Your journey is both brave and inspiring, showing the power of curiosity and love. How has your holistic approach to healing influenced your perspective on life and parenting?
Thank you. And thanks for your inquiry. The experience is slightly anachronistic. It would appear that my hippie ways have alienated folks I’ve considered friends, but perhaps that’s just the way of life cutting away investments of energy that no longer serve us. At the same time, my heart has softened to everyone, even those I feel slighted by or those with different ideologies. In the end, we’re all just trying to put together jigsaw pieces to a puzzle for which we’re missing the top of the box.
As far as parenting, I feel like I could say a lot and I don’t want to clog up Andrea’s comment section, but the biggest take away is this: my cancer and my approach to it has helped me realign all the relationships in my immediate family. In that sense, my cancer has been a true gift. And practicing holistic, non-conventional methods of healing has allowed me to enjoy my children a lot more and create an environment free of the stresses of societal expectations.
Two years ago I woke up numb from the waist down. It took 6 weeks to get a diagnosis, which was a long time of not knowing. I decided since I couldn’t have the “real” answer right away, I would spend my not-knowing time imagining the most magical explanation I could think of. I decided that this must be how it feels to transform into a mermaid! So any time I felt anxious or compelled to Google worst case scenarios, instead I imagined myself perched on a rock in the ocean with a glimmering mermaid tail, which made me smile every time. It ended up being MS, which was the worst case scenario I could have imagined. But I still feel so grateful for those 6 weeks I spent immersing myself in a more magical unknown. And you know? It turns out the diagnosis wasn’t as scary as I feared it would be and has come with unique, unexpected gifts.
Thank you so much for sharing this powerful story Becky. Sending worlds of love your way.
Thank you for the inspiration to share! And for the beautiful community you’ve created here. I felt so held by your people in these comments. Worlds of love back at you.
My child-like curiosity turns MS into Mermaid Supreme...the diagnosis is as close to being a mermaid as adulting allows. Not to diminish the reality, but to keep the magic surrounding it. Becky, thank you for sharing, I hold you in the Light.
Thank you, Carla! I really have kept the magic around it — it’s led me to celebrate my body more than ever before.
Becky, I find your imaginative approach to a difficult situation to be truly uplifting. How has your perspective and creativity helped you navigate life with MS since your diagnosis?
Thank you for the kind words! One of the magical things about my MS diagnosis is the way it's encouraged me to celebrate all of my senses. Every year on the anniversary of my symptoms onset I celebrate it as a personal holiday because I could have lost so much more, and before today's miracle medicines I likely *would* have lost much more eventually. I made a little video about it this year: https://www.instagram.com/p/C79qnBtuF1v/
It has also given me permission to speak up for what I need because if I don't, my body will truly suffer. It's meant unlearning a lot of my people pleasing tendencies.
How sweet and enduring. Thank you for sharing a slice of your story, Becky!
So creative! Your spirit goes far beyond your physicality.
I hope that you are able to consistently surround yourself with mermaids and selkies who whisper the secrets of the sea in your ears.
If you haven’t watched the Song of the Sea, you should 💛
Also, "The Secret of Roan Inish!"
Your essay is truly wonderful, you are magic!
Back when DVDs were a thing, one f my students gave me a copy because it was her favourite film and she thought I'd love it. I did!
Oh what a beautiful image!
❤️
Thank you for sharing this! I’ll remember it the next time I’m sitting in a potentially scary not-knowing. I’m sorry your worst-case scenario came to pass, and glad it has brought unexpected gifts. I had the same experience when I had acute leukemia (and I’m still here 10 years later, grateful).
Grateful to still be here with you!!
Love!!! this -- "imagining the most magical explanation I could think of" Thank you
🧜🏻♀️💖
Thank you for sharing this beautiful way you spent your not-knowing time in a more magical unknown. 💕
Becky I'm in SO love with this!!! I wish I had this same creative sense of wonder when I was numb all around my middle, hands, and feet. But you are ALSO right that MS turned out to be my own special gift which encouraged me to work at being more healthy than I ever would become NOT having MS. I will think of you the next time a symptom flares up. What a gift you are!!
Hi MS buddy!! 🤗 Truly, it has been an eye-opening and empowering experience in a lot of ways… like when my body is telling me it’s too hot or needs rest I speak up for her instead of just making myself uncomfortable for fear of displeasing someone else. It’s really forced me to confront my people-pleasing tendencies among so many other things!
HELLO!! GUH I have so much to learn (and it pains me that my Dx was ten years ago this Dec!!) But as a people-pleaser extraordinaire, it truly takes a lifetime to decouple from that modus operandi. I'm getting there! Coincidentally I got a perfect score on MRIs today of all days, so I'm taking you in this comment section as a good omen all around!
💯💯💯 couldn’t agree more on unlearning people pleasing!! Congrats on your MRI perfect score, friend!! Glad to be connected!
Thank you and I’m so glad to connect!! 🥰
Thank you for sharing this Becky. ❤️
This is so beautiful, Becky! Thank you for sharing. I had a weirdly opposite experience once. I was having some numbness and other issues and went to the neurologist, and he said "I hate to say this, but all your symptoms point to MS." It took 8 weeks to do all the testing and find out I didn't have MS after all (just a bunch of very bulging discs). For 8 weeks, though, I lived in the false certainty that I had MS. I decided that my only path forward was absolute presence. When I say I decided this, I don't mean it was a rational decision . . . it's just what happened. I felt like even if I were to cognitively decline down the road and lose access to the past or future, if I could be always in the unfolding now, that wouldn't be so terrible. Looking back, I see now that this experience way back in 2013 went a long ways toward preparing me for developing long Covid in 2020. I have ongoing issues with memory and brain fog and have no way of knowing what that will mean for my cognition as I age, but in the present moment, I'm always okay, and so I try to live my life there. And that's been an incredible gift!
Thank you for sharing this, Lisa! Isn't amazing how these reactions just rise up out of us sometimes?? What a gift when it happens! Sending much love to you. <3
As a mama I had this deep, abiding, full faith knowing that if death should ever come for my beloved & only child, that my heart would simply stop beating— I had absolute trust in this, each time I feared the worst happening to him (which I think mamas do, believing if we worry enough, the bad things won’t happen, our worry will outsmart danger!), I was assuaged— I didn’t have to consider what I would do or how I would survive—because I just knew that I would cease to exist. It would be handled by the same force that created the love I had for him.
And then— it happened— that worst thing possible. He died. At 18, unexpectedly, closing in on 10 yrs ago now.
And I didn’t.
This has left me without any certainty at all of anything, at all. I am fascinated by the mystery at work within our lives, thoughts, assurances— even our survival. I have utterly surrendered to the not knowing/not being able to predict or prepare, understand or control. The world feels utterly upside down from what “I knew” since the day the most beloved boy I know left this realm— and I am left with my mouth agape in wild wonder of everything because I was so wrong about that thing.
Oh my heart, thank you for your words. Thank you so much. So much love to you.
Oh mama, I’m so sorry the worst thing possible happened in your life. I too am surviving this worst thing in the world, just days away now from the first July 28th that my beloved son is no longer in this realm. Wonder and curiosity have been a native language in raising my little family. I’m now, amidst it all, pondering so many new questions that I know are unanswerable. The curiosity sits deeply within, wrapped around the heartbreak we didn’t know we could survive. I experience unexplainable curiouswonder moments and occurrences and ask how can this be, by what magic or grace or mystery is this spark lighting this moment? I appreciate the questions that accompany me, and I keep asking them, silently and also aloud to my beautiful Stephen, aloud to the universe….knowing there are no answers, wanting to have the answers, making peace with this new realm of curiosity.
Stephen is in heaven with God, praying for your happiness.
God bless you.
Be still and be you.
Be still and know.
Christina, I am so sorry for the loss of your son. I know this isn't the "right" thing to say, but your comment is something I think that will stay with me for a long time. My son is 15 and is truly what keeps me going in life right now. I think often about exactly what you wrote: that if I lost him I would shrivel up and my heart would stop beating. When he was a toddler (he doesn't remember this) he must have had a nightmare because he came to the side of my bed and said, "mama....if one of us ever goes to heaven first, the other one can just put a spear into our belly so we can go to heaven together," and that has tormented me for 11 years now. We are so closely woven together with love and the deepest understanding that I've ever had with another person, that I honestly can't imagine living without him. But I will say, thoughts like this that I have all the time are not great for me (or him, even though he doesn't know I'm having them). I think it has made me very hyper aware of anything that could harm him (aka over the top helicopter mom stuff going on) or go wrong in his life whatsoever. Panic over any allergy attack he has, etc. It's not the ideal way to do things, I know, but also...worry was the language of love in my family of origin, so I speak it well!
Soooo many ((hugs)). It’s impossible that the world has kept on spinning after such a horrible event as the death of a child. And yet it has.
I am sorry to hear about your son.
I am fortunate that my beloved children are both alive and well. I feel I understand exactly what you describe in the pre- time. I could only continue on by tricking myself or controlling where I allowed my brain to look.
Thank you for demonstrating another path forward.
Thank you so much for saying this here to us now. It’s true. We do think that if we face the monster in our mind head on, the tragedies won’t come for us.
Thank you for being a Light.
Your son chose you for his short contract on earth for a reason. 🐞
Christina, thank you for sharing this. We lost our James and the world has never been the same. Sending you love
Thank you for sharing, Christina. Sending love.
You just broke my heart open, Christina. Thank you!
Christina, your story is incredibly moving and powerful.
How have you managed to find strength and meaning in the midst of such profound loss and uncertainty? 🧡
Our son Max died 16 years ago. His passing was both the worst AND biggest gift in my life. Of course we wished it had never happened but when I finally (after years) learned to accept "what is" I allowed the most amazing gifts to occur within myself. Love, grace, forgiveness, growth, vulnerability...all of these feelings in me grew enormously because I had lost my son, my sun. I am forever grateful to Max and to the Universe for these life-changing gifts.
Hi Andrea,
Your writing here reminded me of one of my favorite book passages of all time.
In the book, “Lovingkindness,” Sharon Salzberg wrote, “a modern astronomical view, says that everything in the universe is moving uniformly away from everything else in all directions in space, so that there is no centerpoint in the cosmos at all. We live with no fixed reference point. From one perspective, this understanding produces the desolate feeling that there is no home. But from another perspective, this realization shows us directly that every point is home. We are free; we do not need to fix on a single center for refuge or safety. This is love, this is happiness, where our refuge is unbounded, and we are always at home. As the Buddha said, 'they abide in peace who do not abide anywhere.'"
GORGEOUS
Thank you for sharing this quote! Sharon Salzberg was my first Buddhist teacher, and I remember when my friend first loaned me this book and just holding it in my hand brought me a sense of rightness before I had read a word.
Brandie, I'm so grateful that you posted this passage from one of my favorite books. Long ago read, so the passage was long ago forgotten. It's just beautiful:)
Thank you for sharing this! It grounded me in the home of my body :)
I have been struggling with this concept of leaning into curiosity over certainty recently. My mom died on Sunday after being diagnosed with a severe and rare cancer only 3 weeks ago. It has been such a shock and I’m heartbroken. I couldn’t imagine this reality a month ago. My only comfort is that I may see her again one day or that she is watching over me. But I’m struggling with the fact that I don’t know this for certain. No one knows what happens after death. Thank you for this, Andrea. Your words have always brought me comfort but especially these last few weeks. I’m going to try to channel my childlike wonder, curiosity, and hope ❤️
Such compassion for your journey that holds such love and grief. My mom passed a long time ago, I was a 25 and didn't know what do with such depth of grief. Wonder can be present in this space, even if it feels so far away. I remember not being able to sleep one night and, like a child, putting a flashlight to my skin staring at the veins in my hands wondering what made me human. And when I found her x-rays in a stack of papers, examining them for hours. I couldn't look away. Such hope that as your journey unfolds, these tiny spaces of wonder hint in between the waves of grief.
❤️❤️❤️❤️
Ah, but you are a part of your Mom just as she was a part of you, whether genetically and/or by the osmosis of having been together. I tell my children they will never be rid of me, mostly a good thing, sometimes frustrating when they find themselves making the same mistakes I have. Peace to you Mickey ❤️
So much love to you. ❤️❤️❤️❤️
Oh Mickey, what a shock to lose your mom so suddenly. Sending you love and comfort, and
hoping that your curiosity and wonder lead you to a sense of her ongoing presence in your life. For now, please let yourself lean into grief.
Oh Mickey. My Mom had co-habited really well with her cancer for 16 years, and when that shifted she went from vital and alive to dead in about 3 weeks, as well. She passed away 2 months ago. It was fast and shocking and world spinning and life altering and probably will be for a long while. If it's any consolation, 5 weeks further out from you I can breathe, sleep, eat and work and while I cry about something to do with her every day, it's not all day and the memories are sweet. The poem Wait, by Galway Kinnell, has helped a lot. Life does become interesting again. Curiosity does return and wonder, too. Small, particular joys. The taste of food. Clouds. Touch. Music. The pollen of milkweed saturating the backs and legs of the bees feasting upon them. I feel my mother close to me often, and I am more easily able to sit in the unknown and be grateful for our love and connection, which still exists in all my cells, my heart, my mind. Missing her feels like a wonderful gift now. It is a direct path to love. I wish you ease, and peace and love.
Thank you, Nancy. This is beautiful and comforting for my future. Today was my mom’s birthday and was a particularly hard one. I needed to hear these words. I wish you peace, ease, and love as well.
That's so fast. You must have felt like your head was spinning the whole time; probably still is. My love to you as you go forward.
Sending blessings and love to you, Mickey 🧡
Oh Mickey, my heart goes out to you. My mother died suddenly as well and I've spent so much time looking for her. Now, after many years I allow myself to live in wonder and curiosity. I see her in the crows, in the glints of light, the poems that come to me and the memories where we both live. Grief does not end, but it transforms. So much love to you!
Mickey I’m sorry your mom died. Sending love for you
Achievement feels so sticky lately. I just want to love people. And play.
Yes. I used to be so ambitious but recently it’s been sliding away from me and I don’t even miss it. It’s disorienting but also freeing. Curiosity and wonder are the best substitutes for striving.
❤️❤️❤️❤️
Saw you on the #answerthecall zoom last night! Was not at all surprised. Interesting times. . . . 💚
I have found that as I stopped living from my hyperachiever driving my inner horses, the tremendous grief inside me continues its rise. It IS disorienting. In place of goals is a diffuse experience, I’m the ripples from a stone thrown in a pond. They go their own way, take me to someplace that takes direction from something I’m just beginning to understand. One thing I notice is that that thing directing the ripples knows what’s in my heart and strips away what’s misaligned.
That rings true. Following your heart rarely leads you astray.
Amen.
This put a smile on my face. And me too!!
Thank you for all of this… writing it and sharing your perspective.
When my daughter died six hours after she was born ten years ago, I found myself needing answers about/for everything… what I was going through it for, why she was sick, what was the point of her being born only to die so soon, where did she go after her physical body failed her, did she know me, did I know her? And I thought I found answers, but I came to realize ten years out that my answers were a substitute for the grief of uncertainty and the uncertainty of grief that I didn’t want to go through, which is when a sort of personal spiritual crisis for me began. Now I realize I never really asked questions after she died. I just sort of fast-tracked right to the answers, and like you said, some of those answers ended up being like clouds.
Now I try to live by the motto “question everything,” and I gravitate towards people with more questions than answers (or at least as many questions as answers). And I try to quiet the endless chatter this world (and my own mind) can sometimes be so so that I can hopefully better recognize what’s true. I’ve been trying to learn that I don’t always have to know the “why” of certain things, and that perhaps I am called only to observe the things, rather than understand them.
I have been reading a lot about wonder lately, most recently Herman Hesse’s… well, wonder-ful thoughts about it. So this just serendipitously falls right in with the theme I am seemingly being shown these days.
I recently found a conversation I had with my son when he was about six. I had written it down, and I am glad I did. He asked me, “Mama, what if your shadow was shaped like a chair?” I don’t remember asking imaginative questions like that as a child. At fifty-two, I am learning it’s not too late to start. ✨
Wow. All of this. Wow. And thank you for your giant heart.
omg, I love that question from your son! Amazing!
I chuckled at your son's question! What a creative and curious mind and an awesome question! Now i'm curious about your answer 😊
☺️ The answer I gave my son is in this post I wrote about it 💛✨…
https://open.substack.com/pub/georgiabateman/p/what-if-your-shadow-was-shaped-like?r=auvbb&utm_medium=ios
Thank you! I love your post. I hope you continue to document precious moments with your now teenage son...
🙏🏻💛
I remember the same feeling in childhood, so insatiably curious about everything. I also remember the difficulty of communicating my wonderings and experiences, many of which were cosmological in nature (poor little double Pisces). I have a vivid memory of eating lunch with my mom at a shrimp shack in Galveston, I was maybe 9 years old, eating a poboy and asking her something about the nature of the universe and getting a blank stare in return. I was so disappointed that this person who was everything to me wasn’t also fascinated by this! I soon repressed almost all of my curiosity in an effort to survive the chaos of my family and being a queer kid. I’m so grateful it returned later in life, and I’ve given it full rein now! I’m much more comfortable with brief glimpses of truth than answers these days.
❤️❤️❤️❤️
Adrienne, your childhood curiosity and the experience of feeling misunderstood are so relatable. It's heartbreaking when our deep questions aren't met with the same enthusiasm by those we look up to. The fact that you repressed your curiosity to navigate your family chaos and identity struggles speaks volumes about your resilience.
I find that it's wonderful to hear that your curiosity has returned and you’ve embraced it fully. Being comfortable with glimpses of truth rather than concrete answers is a beautiful way to approach life. Your journey from repression to embracing your true self is inspiring. Thank you for sharing your story! :))
Thank you so much for your kind and thoughtful response! I didn’t mention that this return to wonder was catalyzed, like Andrea’s, by a protracted health crisis (acute leukemia and long term side effects of successful treatment) that turned my adult life upside down and forced me to stop working for money. I highly recommend reactivating curiosity and wonder without waiting for such a dramatic wake-up call!
You're welcome Adrienne, and thank you for sharing your wisdom with us 🧡
This is a deeply beautiful piece, Andrea. Thank you.
I suspect, from your words, and from my own experience, and from other commenters, that the portal back to this place of wonder and curiosity tends to come through the things that we would never choose to experience, but which come to us anyway. My own portal was undoubtedly a chronic illness, which I'm now some 7 years into.
My moments of wonder now mostly seen to come from the beyond-human world. Just over a year ago, sitting watching the sand martins flit aerobatically over the local river at a beloved urban wild space, I found myself thinking: "all of those things I thought I'd achieved in my life - they mean nothing. But here, now, feeling such love both for and from this place, I could die happy." Moments like that mean everything. Make me feel like I'm Home.
Thanks for your wondrous question 💚
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Your comment is filled with thoughtfulness, wisdom, and compassion. It touched me.
Thank you for saying so 🙏🏼💚
Love this, Andrea! It’s so beautifully articulated. A letting go of the need to be right & a return to our childhood curiosity & awe. A rewilding of sorts. 🌿🥰
Rewilding. Yes.
It’s interesting to me that grief and wonder sometimes walk together hand in hand. Have you noticed that? My times of great loss and grief have been held in love by the wonder and magic of the Love that holds us all. Sometimes it takes me a long time to feel into that Love but it’s always there whispering in my soul reminding me that even in this dark time of life there is joy to be had.
I feel this so much. Thank you.
This is beautiful, Alison
Hi! New subscriber with a visual impairment. Will you consider adding alt text image description to the pictures? Very easy, very nice; bet I am not the only one reading with a screenreader :) Thank you for your awesome words!
Absolutely!! I didn’t know there was an option for that but I will figure it out moving forward. Thank you!
Amazing!
Hi Tone,
Welcome to this space!
From what I recall without scrolling up and losing your comment in the sea, the first photo displays Andrea with their back to the camera, holding a small dog who is looking in our direction over Andrea’s shoulder. I believe this was around sunset or sunrise- the sky full of rich colors like reds and orange.
The closing images are all original works of poetry by Andrea.
🤍🤍🤍
To remain curious in the face of uncertainty reveals your heart as a seeker. How much more there is to learn when I don't have all the answers and aren't even sure of the questions anymore.
One day 10 years ago I was walking into a meeting when I got a call and was told that my beautiful, brilliant daughter had been struck by a military truck in Morocco where she had been studying abroad. All we knew was that she had a terrible brain injury ("massive axonal damage", "brain surgery"). We didn't know if she would live long enough for us to get to her side. Certainty cracked open that day and I found myself screaming. I kept screaming until even the deepest certainties were poured out of me and nothing was left.
No recognizable patterns or past knowing were left. No reassuring certainties about the future. I remember thinking, "this is the moment when everything changes", and it was. All I had to hold on to were sensations of the moment. I was both lost in grief and open to a kind of wonder I hadn't known since before my memory began. At first, the change was so profound I felt a strange loss of equilibrium. It's never left me, though it has settled.
Syd lived through three brain surgeries (two in a rather primitive public hospital in Rabat), a life-flight to London, numerous infections, coma, and the process of rehabilitation. An indomitable soul, she overcame all odds and went on to get her Ph.D. in neuroscience last summer, has run 7 marathons since her injury, and was just married to a wonderful guy. But I learned that we don't get to expect anything. None of that was expected. I learned also that joy can be profound and dizzying.
Zen study both before and after her injury have allowed me to use this experience as a springboard to access many more moments of beauty than I ever imagined existed in the world. Like the kind generosity of people we knew (and so many strangers !). Cards, emails, WhatsApp messages etc conveyed so many messages of love that I felt held upright by it's force as I navigated the vast not-knowing. Maybe the only certainty I gained from the experience is that there is just so much love in the world. It's everywhere. And there are so many moments of joy-drenched sensation, if we can pause to see them. The journey to her recovery was terrifying and exhausting, and these moments were there through all of it and have remained.
Oh my goodness this story. So so powerful.
Thank you, Andrea. Your words leave me wondering, in all the best ways.
For me, having (or looking for/insisting on) answers usually means I am holding too much fear. Truth feels different. It's expansive and usually quieter. Less words are attached to it. Not as noisy as "having the answer."
I love this and everything you write on this and other subjects. Thank you. That sense of awe is what is getting me through a series of challenges in recent years (our house burning down suddenly, almost taking my family with it, was the least of it). I'm an artist and gave a TED talk on a photo series, "Locked Down Looking Up," that has a lot in common with what you have said about facts. It's only 6 minutes long, <go.ted.com/dorismitsch> but if you don't have time for that, it's summed up pretty well in the quote I ended it with, from Jarod K. Anderson's poetry: "Bats can hear shapes. Plants can eat light. Bees can dance maps. We can hold all these ideas at once, and feel both heavy and weightless with the absurd beauty of it all." Thank you again.
This is incredible!!
Thank you! I recently gave another talk (about a series of photos of my burnt house, but more generally about grief), and quoted you, from "The Snow is Falling", and also ended the talk with another quote that I attributed to you, but which I couldn't find in writing anywhere when I looked for it, so I thought it might have been something you said in a podcast or social-media post: "Pray for what you have." Do I have that right? Or did I paraphrase something else that you said or wrote? Either way, thank you for that, too.
I used to adapt the saying “love is the only answer,” but perhaps it’s more accurate to say “love is the only truth.” Maybe the difference between truth and an answer is that the first is what we seek but the latter is what we get.
My children have helped me stay curious for a lot longer than I imagine I would have in real life. I went from being a theatre maker where imagination and curiosity make the magic to being a parent which rely on the same tool bag.
My personal anecdote about curiosity is also tied in with my cancer journey. I was diagnosed with stage III breast cancer. I decided to see what happens if I didn’t follow standard of care. I was told it was imperative to start chemo and radiation, and instead I wondered off into the uncharted waters of holistic healing. Most people don’t go there until its last resort. I was curious to see what happens if it’s my chosen option. I think my gamble is paying off.
Wishing you many curiosities ahead of you, dear Andrea. May the answers be sublime, but the truths profound.
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"Love is the only truth." I love this!
Love is the only way.
Your journey is both brave and inspiring, showing the power of curiosity and love. How has your holistic approach to healing influenced your perspective on life and parenting?
Thank you. And thanks for your inquiry. The experience is slightly anachronistic. It would appear that my hippie ways have alienated folks I’ve considered friends, but perhaps that’s just the way of life cutting away investments of energy that no longer serve us. At the same time, my heart has softened to everyone, even those I feel slighted by or those with different ideologies. In the end, we’re all just trying to put together jigsaw pieces to a puzzle for which we’re missing the top of the box.
As far as parenting, I feel like I could say a lot and I don’t want to clog up Andrea’s comment section, but the biggest take away is this: my cancer and my approach to it has helped me realign all the relationships in my immediate family. In that sense, my cancer has been a true gift. And practicing holistic, non-conventional methods of healing has allowed me to enjoy my children a lot more and create an environment free of the stresses of societal expectations.
Thank you for sharing your story; I find that it’s a beautiful testament to resilience and love!
Thank you for your interest and kind words. :)