We have to feel them…
It was a ridiculous time in the morning, 1:25am, and I was sitting wide awake unable to sleep. All night I had had a weird feeling in my stomach but was unable to recognize exactly what it was. I was in the ‘city’ for work and not being able to sleep in my hotel room, I got swept away watching One Mississippi on Prime Video (thanks to Amazon and Tig Notaro). I started watching the show about a month ago and the depth of vulnerability each character is able to evoke through the camera is extraordinary. I was hooked. However, on this night, there was a particular scene that clearly struck a chord with me… In a pivotal scene, Sheryl Lee Ralph’s character, Felicia, says “You cannot pretend these things have not happened. We have to feel them FULLY in order to feel anything else…” It was in that moment that I realized this particular night was the very first night I had spent alone, physically alone, since my daughter, Sophia, passed away exactly 18 months ago. Ever since the night of January 1st, 2017, I have not been alone in my own space, away from the sanctuary of my home, from the people I love, not even once. And I feel… Conveniently, I have been trying so hard not feel these past eighteen months. Countless times, I have been told ‘oh, you’re overreacting’, or ‘it’s time to move on’, or ‘you’re too emotional’. Toss in society’s innate inability to have difficult conversations or be comfortable in someone’s grief and you’ve got the perfect recipe for thinking you can’t or shouldn’t feel. Most days I find I am dismissed, invisible, abandoned even, by the people in my life I thought would show up. I have been medicated, have gone to therapy. I even tried smoking pot to ‘feel’ less; grasping for a moment of euphoric ignorance to drown my sorrow. While medication may necessary and therapy incredibly helpful… “You cannot pretend these things have not happened. We have to feel them FULLY in order to feel anything else…” I picked up my phone and began to scroll through videos I have of Sophia and I sat there that night, alone, and I gave myself permission to feel; raw, emotional, deep longing for my daughter. I realize that part of coping is feeling; and in order for me to be present in my life today, I cannot pretend Sophia didn’t die. In order for me to feel deep love, laughter or seek joy, I also need to feel my grief and sorrow FULLY in order to feel anything else. And if you’re uncomfortable with that then fuck off. Some of you already have. But for those of you who have been steadfast, tender, true…I am grateful. I long to feel ‘ok’ and maybe I won’t ever get there. But I certainly won’t stop feeling FULLY in order to appease the masses , and I certainly WILL feel fully to live my grief among the safety and sanctuary of not only those around me, but with those who aren’t.
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GRIEF GRIEF GRIEF GRIEF GRIEF GRIEF GRIEF... That word beats into my brain day in day out; it pounds on my heart and has ripped out any normalcy that may have existed in my life. I can taut the origin or definition of the word 'grief' but what interests me more is that it is considered a noun; referring to a person, place, thing or idea. This past year grief has been a person, has been a place, has been a thing and prior to January 1st, 2017 was an idea I dreaded to experience but knew was inevitable. Leading up to the first anniversary of Sophia's passing, the anticipation nearly killed me. My chest hurt; piercing, stabbing, searing pain right through to my back...I was sure my heart was really going to break and I would drift off into the same unknown ether as Sophia. I found myself longing to be back in the room she passed; and honoured her passing sitting in a comfy chair at Canuck Place Children's Hospice. Walking back into that space seeing the same nurse who was on that day, Roxy, the cook in the kitchen, the same counsellor tending to my needs, it was deja vu. The only thing missing was Sophia...and while we lit a candle in the window at 8:45am, the ache of missing her skin, her smell, her laughter, bore into my throat and I sobbed missing my daughter. This past year has been a life lesson, for sure. People showed up when I least expected it and those I expected, just didn't show, still don't show. I allowed myself to be bullied, allowed others to dictate how this year was going to unfold, and found myself catering to everyone else's needs...only to be told I am selfish, manipulative, oh and my favourite...'get over it, move on' from people who never had the same relationship I had with Sophia. From people who over the course of Sophia's life, didn't show up or really understand the enormity of what caring for her entailed. On the contrary, I also experienced the extraordinary compassion and love of people. The group of women who showed up are selfless, remain unintimidated by my sorrow, and have allowed their own vulnerability to marry my own creating a community of strength, resilience, support, laughter and a lot of wine... My best friends became my family when we needed each other most. And I found love...true, honest, deep, love from someone who has not left my side despite my pushing, despite my crazy, our crazy My heart beats deeper because of who they are and the unconditional love and adoration that has become the foundation of our relationship; decades in the making. So this year of grief has passed. Another one to follow, by another, and another, and another. This is the journey of a bereft parent. Grief doesn't end and gratefully our understanding of grief is changing. The concept of living grief begins well before our loved one passes and the experience becomes a part of our life for ever more. The day of Sophia's celebration of life Harris Barn become covered in bald eagles; dozens and dozens of eagles. When an eagle appears you are on notice to be courageous and stretch your limits. Sophia was the epitome of courage and stretching her limits. She believed she could be capable of anything. This next year I can only hope that living grief continues to shape my life and those in it. Sophia was one of a kind and loved deeply. She found joy amid suffering, laughter at every crazy thing, she loved living and like the eagle, who soars higher than any other bird, Sophia soared higher than anyone I have ever known. I would be doing her an injustice if I let the grief and loss wash away my own life, or the life of those who have endured one of the hardest years I have ever experienced. I know it is going to continue being a challenge. I know that people will come and go, disappoint and surprise. But the depth of love that Sophia shared endures...in those who love her and in those Loved Sophia. Consider this an invitation to come join me on the journey... Well, it’s a difficult thing to have to write a eulogy for your child. Where do you start? How do you end? How can you possibly sum up your beautiful child’s life in 8 minutes? Do you get up and read it yourself…or do you get someone else to because it’s a difficult thing.
But Sophia is my best friend and was my happy companion for 16 years, 4 months and 29 days. And they were the most extraordinary 16 years, 4 months and 29 days. And it is my honor to come up here today and be Sophia’s voice, to share my heart, to share our loss. I knew from the moment Sophia was born, much like with her brothers, that life would never be the same again. I realized just what an under statement that may have been when I found myself sitting in the back of an ambulance less than 24 hours after she was born…Sophia was on her side, in an isolette (like an incubator) with just a little diaper on…the paramedic and I sitting next to her. That entire ride to Neonatal ICU Sophia just looked at me…stared, with these big wide beautiful eyes. There was a wisdom in those eyes right from the beginning. Anyone who knew Sophia in her early years, may recall Sophia didn’t really talk much, she rarely cried even though we relentlessly poked her little toes and fingers, gave her shots in her legs, put tubes up her nose. She was so good, so patient, so enduring. Sophia, despite all her medical and physical hurdles, is and was a typical child and teen…and, yet, at the same time, she was so much more. For years, and even now that she has passed, people have come up to me and said how Sophia is a miracle, how she has surpassed everyone’s expectations, how she’s lived longer than anyone anticipated. The thing is, while Sophia may have outlived everyone else’s expectations…she didn’t outlive her own. She lived large, she lived boldly. She is courageous. She had big dreams and big goals of a life full of joy, full of laughter, full of music and full of people… Sophia loved people…early on she would sit contently in your lap, curl up in the croak of your arm, be plunked on the counter at the nurses’ station. She was so tiny that up until she was about 3 ½ I would carry her around in a little bunting bag but always facing out…never facing in because she loved people, and she longed to observe the world around her. She just wanted to be part of the action. It didn’t matter how she was feeling, whether she was in ICU, or a music concert, or at school, camp, home…she wanted to always be with people. As her health started to change this last year and she couldn’t go to school anymore, her iPad became her life line to the world, to people and those around her. For those of you who were Sophia’s Facebook friend…you know what I am talking about. Sophia liked everything on your Facebook feed. She loved Messenger and FaceTime. And it didn’t matter if you were working, in the car, at school…she would bombard you with calls and messages until you finally succumbed. I know her cousins that are here can certainly attest to that. Right, Kimmy? And my brother, Bill, who set a FaceTime date every evening with Sophia. Where she would end her night laughing and giggling at his antics. As Sophia became a teenager and as her health declined, she definitely became more discerning. She had a preference…young, pretty, female. I’m not sure how my brother fit into that, but she did make exceptions. And you knew when you were in, if you suddenly felt a little tickle on your leg, or under your arm. It was Sophia’s way of saying, ‘Hey, I think you’re cool, I want to be your friend’. But when you were in, you were in. Sophia loved you no matter what. You will notice the buttons that were handed out, and on the schedule for today…has, in Sophia’s own handwriting, Love Sophia. Every time Sophia posted to Facebook, or sent you a text, or message, or even in her communication via iPad with her nurses, she always signed ‘love sophia’. It started to get autocorrected to LOVED Sophia…so every time she signed off, the last words she said were LOVED SOPHIA. And it fits…loved Sophia. She loved large, she loved boldly, she loves courageously. Everyone here today has in some way, been touched by that love. Either as a volunteer, a clinician, a nurse, through school, as a peer, through her brothers, or through us as her family and friends. There are a lot of people here in this space, and Sophia shared her life and her love with each and every one of you. And while she lived large and lived boldly…the last few years, her world became smaller. Sophia’s body was being impacted in ways she did not like. And this past year, when she went blind her world became even smaller. But what kept her going, beyond sheer determination and stubbornness, was her ability to see and feel the joy in every day, in any moment, with whomever she was surrounded by. And it’s why the auto correct LOVED Sophia resonates…she was loved, she was joy. And everybody here today loved her and contributed to her joy. The last three weeks of Sophia’s life were difficult. There was not a lot of joy. But there was a lot of love. And even when she was screaming ‘I don’t want to be here”, “I’m done”, “I hate you” to those around her…she was loved, unconditionally, tenderly. And one of the most important and hardest things I’ve ever had to do as Sophia’s mum was help her let go. She held on because she loved, and in the end she was able let go because she was loved. We have all learned something through our touch point with Sophia. For myself, as her mum…as her caregiver, her companion, I have learned that despite the pain, despite the discomfort, despite the world changing around you or maybe your body failing…you love. And that love will turn into joy, into laughter, into courage. You will live large; you will love boldly… Sophia is my best friend and it is my privilege to love my beautiful daughter and to be loved by her. There isn't a moment that goes by that I don't miss her terribly, longingly. I am forever changed. Her remarkable legacy will continue…in me, in her brothers, in my brothers and sisters, her cousins…and in everyone here today, who Loved Sophia. My stomach churns with worry, my mind races with uncertainty, my heart beats deep with anticipatory loss. We are in hospice, my beautiful daughter finding peace in a still unknown and unfinished journey…
C.S. Lewis in his A Grief Observed reveals that “No one ever told me that grief was so much like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning. I keep swallowing.” I have been living in grief for so long, I naively thought I would be prepared for being with dying. But I’m not. And I am pulling on every resource I have to be present, to bear witness and remain an advocate for my daughter. I’m raw, vulnerable, tender in spots I never felt before; collapsing into sobs that rack my body hours later. I have foregone the makeup and any futile attempts to normalize what suffering looks like. I can no longer hide my tear filled eyes or wipe the sadness from my face amid the deep deep sense of helplessness that has washed over me. Roshi Joan Halifax writes, “The ultimate relationship we can have is with someone who is dying. Here we are often brought to grief, whether we know it or not. Grief can seem like an unbearable experience. But for those of us who have entered the broken world of loss and sorrow, we realize that in the fractured landscape of grief we can find the pieces of our life that we ourselves have forgotten.” I can only hope that on the other side of my sorrow I’m able find the pieces of my life that I have forgotten. That I will have the strength to open my eyes, to practice humility, and heal what right now seems unbearable. "The cradle rocks above an abyss, and common sense tells us that our existence is but a brief crack of light between two eternities of darkness. Although the two are identical twins, man, as a rule, views the prenatal abyss with more calm than the one he is heading for (at some forty-five hundred heartbeats an hour). - Vladimir Nabokov, Speak, Memory
Sophia has ups and downs daily, sometimes hourly...she can barely catch her breath wrenching, choking on her own secretions, her body slowing down running to pause. Every one of her last breaths wrapping themselves around my heart, like a vice in my chest tightening, and tightening...my free flowing tears lubricating the sense of loss that grows with every moment closer. I can barely catch my breath in-between 'change'. All either one of us can do is breathe... I am a mother witnessing her child die. Labor, glorious labor…it’s three stages of agony with a beautiful outcome. Witnessing your child die is a cruel form of labor with an outcome no mother wants. It’s laborious in its truest, rarest, rawest form. The pain and agony shifting from uterine and cervix to chest and throat…the contractions becoming more intense the closer death seemingly gets. In child birth, we experience early labor, active labor and transition. Parenting a child with a life limiting illness we go from cradle, to bedside, to grave. I’m at bedside…vigil. The sunshine currently streaming through the windows creating a halo above Sophia’s head, teasing me with a heaven on earth I only wish we knew. Forty five hundred heartbeats an hour dropping to twenty seven hundred…fifteen breaths a minute dropping to eight, the cradle rocks… Living Grief is the profound journey of ongoing loss; where we can neither grief nor celebrate. Yet, our loss is palpable. We feel it wrapped around our throat choking back vulnerability we've not ever experienced before. We journey through acceptance, make friends with physiological depression, butt up against anger, bargain with whoever or whatever holds our conscience...ultimately, finding the sweet spot of denial where we can see and be what 'is' and live in the joy of where we are at on our journey with our loved one. My gorgeous daughter, Sophia, turns 16 today...16 years more than we expected to have her, 15 years later with a palliative designation. This day comes with a myriad of emotions...from joy and celebration, to deep sorrow and grief. I write countless blogs around Sophia's birthdays when I become infused with a sense of melancholy that washes into me like salt from the sea. It's been sixteen years...and year after year, time and time again, I get what I call 'grief shamed'. How I grieve gets judged on a regular basis. "Why don't you just love her for today?", "Everyone dies at some point", "She was given to you for a reason", "She's looks good, Bev!"...and my all time fav, "Oh, you've had her for longer than you expected". Even in our world of medical support, I've been judged and words like 'too sensitive' or 'over reacting' have been slapped onto my forehead as Sophia's mother and family care giver. FUCK YOU! How dare anyone judge or shame someone who is grieving or in living grief. Even today, I will be met with comments like "You never thought she would make it to 16!", "Be happy, find the joy in the day", "Be grateful you still have her". Seriously? Living Grief isn't about not being grateful, not finding and feeling joy. Brene Brown believes "Shame needs three things to grow exponentially in our lives; secrecy, silence and judgment." In my experience, very few people can discuss living grief or this journey of being a mom of a child with a life threatening, life limiting condition. Quite often, I am met with silence or one of the above well-meaning but incredibly naive and insensitive quotes pushes me into silence. It isn't necessarily a secret that Sophia or even my grief exists. But more often than not, we and our living grief exist in isolation in our community. When you have someone in your life who is dependent on oxygen, or has physical and/or medical needs and limitations, your world becomes smaller. The opportunities to go out into community become less and less. We live on a farm so our isolation is exacerbated, our world even that much smaller. We depend on people coming to us. Secrecy, silence and judgment... Caleb Wilde, a funeral director, wrote about how he, himself, grief shames and grief measures. But he realized..."the problem with grief shaming and grief measuring is this: there isn't objectivity. Grief is proportional to love and intimacy. The more you love someone and the closer you are to them, the more you grieve. And telling someone that their grief is misguided.. is wrong." So what is the antithesis to grief shaming? "When we find the courage to share our experiences and the compassion to hear others tell their stories, we force shame out of hiding and end the silence." It is about creating safe space to share, it is about being open with our vulnerability, it is about meeting those like me, living grief, where we are at...just meet us where we are at, no shame, no judgment,creating a vast field of compassion... Today, I will be swallowed up in denial...and will let joy breathe for me, filling up my lungs until I can cry no more and the melancholy rocks my broken heart to sleep. Happy Sweet Sixteen, Living Grief... Self Compassion versus Self Care I wrote this blog some time ago, however, the subject around self care versus self compassion keeps popping up both personally and professionally lately so I felt the need to re-post. Professionally, when organizations are going through change or transitions, managers can and do become overwhelmed with responsibility for both the operational shift and the people management of their staff. It is easy to go home late, exhausted, reactive to one's family. The idea of self care just adding to the list of to do's in our world. I was having coffee with a dear friend and colleague one morning when the question came up around self care and what am I doing for my own self care. And let me tell you, it was a trigger…boy, was it a trigger. I am sorry, dear friend! In living grief, especially as a parent/family care giver you are, hopefully, surrounded by many many people who have the right intention of making sure you are taking care of yourself. You know the saying, “put the oxygen mask on yourself first”. Bless them! Self care has become a necessary focus as family care givers burn out on these profound journeys of ongoing loss. We are looking after our family members more and more at home and for longer periods of time with more medical complexity than ever before. I have been caring for my daughter and her life limiting, life threatening condition now for over 15 years. It has always been a challenge to be conscious of my own well being; physically, emotionally, mentally, spiritually as her journey and condition deepens. But now, traversing into what is deemed ‘palliative’ care or ‘comfort’ care due to a significant and somewhat sudden shift in her condition, it almost feels impossible. Thus my whole ‘fuck self care’ moment this morning. I know everyone is well intentioned. I get that ensuring I am ‘ok’ and looked after is important. The reality is, I am NOT ok. I know that my metabolic system is screwed up. That I am over weight, that I lack a good nights sleep. That I can barely get food down without incurring such excruciating pain from reflux. That I walk around with the fear of loss etched on my face, grief looming over my shoulders. This is the reality of living grief… Try as I might to eat healthy, keep hydrated, meditate in the bath each night, get outside in my garden, seek counselling or a reprieve with friends, it is never going to be enough to abate the churning pain and devastation of watching your child die. It is never going to be enough…and where I am at today, you can’t convince me otherwise. But asking me over and over again, be it a health care worker, a counsellor, a friend, a family member, clergy about my ‘self care’…just adds to the stress and can be quite overwhelming. It just doesn’t help. Great, one more person I have to answer to, or one more thing to add to my already overwhelming, exhausting, stacked plate. Fuck self care At the same time, I am not saying self care isn’t important. It is! But it has to be on your terms in a way or form that not only you can manage but that resonates with you…on the inside, not the outside. Self care in living grief is so much more than what you eat, how much you exercise, how long and how often you meditate. It is about self compassion. My dear friend, who’s got a decade on me, understands that self care is only dangerous when you close yourself off, when you shut down, push back, tuck yourself away from the overwhelm. True self care…if we are going to keep calling it that, is when you allow yourself to remain open, porous, vulnerable. It is in remaining open that you will be fed, you will be walked, you will be nurtured, hydrated, tended to emotionally, physically, mentally, spiritually. That is true self compassion in living grief. “The strongest love is the love that can demonstrate its fragility”, Paul Coehlo It isn’t easy to stay porous, to be vulnerable, show fragility. I really didn’t think I could become any more vulnerable until a few months ago when my daughter didn’t wake up for several days. I didn’t think it could get worse, that I could possibly become more fragile as I sat vigilant next to her bed in our paediatric hospice. But I did…my vulnerability deepened and my needs for ‘self care’ extended beyond the physical. I wept spiritually, my heart and soul drowned in tears of pain. It was an epiphany; self compassion reigns in these moments, it has to. “We cultivate love when we allow our most vulnerable and powerful selves to be deeply seen and known, and when we honor the spiritual connection that grows from that offering with trust, respect, kindness and affection.” Brene Brown In that moment, it was my long time friend, Angela, chatting with me in the hospice library; it was my dear friend, Tracy, texting me her own crazy life; my other friends inviting me out for drinks, tea, coffee, walks. It was the staff and volunteers at Canuck Place Children’s Hospice who with grace, and kindness met me at my place of fragility, walked with me through the deepening vulnerability of living grief that truly supports the degree of self care such a journey requires. I am lucky to have my dear friend, her wise words, her conditional love for my well being. And for the select few beautiful, generous, kind souls who I’ve become spiritually connected with. Because even if I want to fuck self care, they don’t let me…and know it runs deeper; it's about self compassion. Check out another great blog from my dear friend and colleague, Kat Thorsen on Self Care versus Self Compassion, as well. What does Self Care / Self Compassion mean to you? Come join the conversation! |
AuthorBC Pomeroy is an awarded and highly sought after Queer Researcher, Community Engagement Strategist, Speaker, Author of Living Grief; The Profound Journey of Ongoing Loss. Beverley’s community service began with a fifteen year career in private health care working for MDS Inc (LifeLabs). This community health care role developed their acumen not only for serving people in need, but also their strength in business management and organizational renewal. ArchivesCategories |