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.
I struggle a lot with privacy as a family caregiver. We have nurses in our home around the clock to tend to Sophia’s medical and physical needs. They report to a private Healthcare Agency…who then reports to our regional Nursing Support Services coordinator at Fraser Health. Our NSS coordinator then reports to a whole other layer within our social health care system regionally and provincially.
We are, also, a part of a pediatric hospice and dozens of specialty clinics at our local children’s hospital. Then there’s life skills, PT, OT…oh, and let’s toss in pharmacists while we are at it. And don’t even get me started on the list of Sophia’s educational support workers. The list of those involved in supporting my daughter is comprehensive.
Some days I feel like there isn’t anyone who doesn’t know our personal business and I sometimes long for the days when I could slip into my home unnoticed, walk around in my pajamas and have the freedom to simply ‘be’.
But the reality is we need all these people and organizations to help support Sophia in her disease process and quality of life. So where lies the balance? Or can there be? It got me thinking about the difference between privacy and confidentiality.
Privacy is the state or condition of being free from being observed or disturbed by other people. Whereas confidentiality is having another’s trust or confidence; entrusted with secrets or private affairs.
I’d like to believe everyone that comes into our lives ensures confidentiality. I almost take that for granted and want to know it to be true. But I wonder if those in our lives understand the difference between confidentiality and privacy and although the nuances may seem so small, the impact on family caregivers is actually quite big.
We have no privacy…which means we are always being observed in our home, in our communities, during hospital or respite stays, medical appointment visits. This naturally makes the family caregiver and the person who is being cared for feel incredibly vulnerable and protective. So we rely on confidentiality.
I get really defensive about who sees our information, where is it being sent to, who has access to what. Just because the right hand funds the left hand, shakes the right leg and extends up the left side doesn’t mean those in our circle of support shouldn’t or can’t be cognisant of information sharing and be respectful of our desire for consent 100% of the time. This lends to developing trust.
We need to trust in order to feel safe. And we know that trust requires vulnerability. For those around us to tend to our needs and to my daughter’s care, we have to feel safe in order let go of our privacy and open ourselves up to being vulnerable.
So if it all comes down to trust, where does the responsibility of building trust lie?
I think that falls predominantly on the organizations, the agencies, the departments, the clinicians, the support workers, to firstly…understand the relationship between privacy and confidentiality and then co-create a space to build trust with family caregivers and their loved one. And it may simply be always asking for consent. Or, documenting and communicating what and who they’ve shared information with.
On a deeper scale, it would mean sitting down with the family caregiver and loved one and asking what privacy and confidentiality means to them. Understanding where privacy can be maintained and ensure the family care giver feels they have space where they won’t be observed and disturbed. Same goes for the loved one. What does privacy mean to the person being care for?
Right now, the only thing we can fall back on are these Privacy and Confidentiality policies governed Provincially.
This isn’t a criticism more of a ‘huh’ question mark. With more and more families caring for loved ones at home, there needs to be a specific focus on what true privacy means for families and how to make them feel safe amid the vulnerability their disease process entails.
And I believe that begins with organizations and agencies sitting down with the family caregivers and their loves ones, to determine just what the looks and feels like…
For me, it is not just about being informed of where and what information is being shared and respecting my desire for privacy amid all the eyeballs in our home and life. Privacy, for me, is just as much about the space in which we live and occupy based on my daughter’s needs at any given moment.
There are days, moments when I think life is normal. I go to work, I meet up with friends, maybe pick up groceries, grab a coffee, get lost in a book or maybe a show on Netflix. Sometimes those moments can last for days, maybe even weeks. Until suddenly, but not unexpectedly, the reality of life grabs me by the shoulders and thrusts me up against the wall yelling, “Here I am! Did you really think I wouldn’t come back for you?” Spitting in my face, “I am not going anywhere!”
My daughter has gone blind. She has lost her eyesight. I’m wiping the spit off my face. We knew she was struggling to see, but she was also struggling to breathe. I don’t think any of us expected her eyesight to go completely. But it did, it has…one day her pupils just became enlarged, and unreactive. And that was that, three weeks ago.
And as I was researching suffering today, I found an image online that said “Suffering is not inevitable, it is an option” and it spurred this blog. What a bunch of bullshit. Who the hell believes that? Someone who obviously hasn’t watched a love one lose their way or their life.
Suffering is not an option in living grief. I didn’t have choice when I sat there in BC Children’s Emergency on a Friday night being told Sophia has no eyesight. Nor did I have a choice sixteen years ago when she was born and I was told she may only have days. Nor when she had liver surgery, or spinal cord surgery, or she began to lose the ability to walk, or the capacity to breathe…
Suffering is NOT an option…it is inevitable. And by denying the truth of our suffering, we only suffer more. There is no shame in being vulnerable, in feeling pain or loss, or anguish. Sharon Satlzberg wrote “acknowledging the truth of suffering is an enormous liberation for all involved”.
I can speculate why society denies our suffering, why my friends and family, as well intentioned, always have to fill my suffering with affirmations or regurgitated repudiation.
But hear this; right now, denying my suffering serves no purpose. I am angry…no, I am fucking furious that my daughter, with ALL the suffering she has already endured, that with every loss her tiny little body has sustained…she has now also gone blind. Are you fucking kidding me?
Suffering is not an option in Living Grief…it is inevitable.
This whole back to school thing is a bit bitter sweet for me. Facebook keeps showing me posts of September pasts and I'm faced with the reality of life and loss. That while my boys have grown and aged out of high school, I've another that has and continues to slip away from what was, what could be...
So while others scramble to drop off and pick up, post their joyful beginnings, I scramble to find a moment of lucidity to squeeze in a bedside lesson. Or creatively adapt something that is supposed to be easy into, ummm yea...easy.
I am not sharing this out of resentment but out of a place of not wanting to dismiss those of us who's lives are 'other'. I am 'seasonally' vulnerable and along with that comes a melancholy ache that more often than I care to admit, seeps into my gut and crushes my heart.
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...
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!
So, admittedly, I am a nerd. Anyone who has seen my desk knows I am a technology whore. I love new innovative systems from Prezi to my Business Manager app to 99 Designs, blue tooth speakers, you name it.
All of these systems and programs allow us to create and communicate our work faster, more efficient, with flashy presentations and flare. The last thirty years has seen technology advance at an accelerated rate unprecedented by any other time in history.
I am a product of what I call the ‘Miami Vice’ generation where we were taught that bigger, brighter, faster was better. And, like many, fell into that trap on a variety of levels both personally and professionally.
Then life happened…as it does, slamming me into a concrete wall of reality. And bigger, brighter, faster suddenly became heavier, vital, exhausting.
Unconsciously being forced to stop, to decelerate in my life and immerse myself in the world which I live and love, left me scared, anxious and full of foreboding.
I was forced to slow down, to breathe and immerse myself within.
I woke up today to a shared article The Power of Patience “teaching students the value of deceleration and immersive attention’ by Jennifer L Roberts, an art history professor. I won’t get into the entire article, you can read the full article on Harvard Magazine.
What struck me was that while we are developing new technologies and systems to increase the speed in which we work and play and communicate it creates a strong resistance to slowing down, to being purposefully contemplative. We are being propelled to act, think, answer, react, share, engage, buy, sell, build NOW.
Professor Roberts instructs her students to sit for three hours and look at a piece of art they have chosen to write a comprehensive report on. The time is purposefully excessive as is the forced environment for which they must sit and contemplate; a museum, an art gallery.
A year ago even thinking about sitting in front of a piece of art or sculpture for any length of time would have made me twitch!
However, a year and a half later, I relish the opportunity to sit and slowly experience the people and things around me. I had the opportunity this year to work on an organic farm. And while it was hard work, physically demanding ten hour days working in the hot sun or freezing rain, it forces one to decelerate even if you have production demands.
Farming, by its very nature, is a process…takes time. And despite our advances in growing, in accelerating the process, to seed, propigate, grow and harvest real organic food, you have to work with nature. Nature is remarkably decelerated and pays attention to detail.
I would start my morning as the sun popped up on the horizon standing in rows of kale; curly green or dark purple beside the colourful chard. My job was to harvest anywhere between 75 to 100 bunches. It would take a few hours. And in those few hours of methodically cutting leaves and securing them in bunches I could feel my body and mind slow down, and breathe. I would feel the wet dew on my finger tips, hear the birds rustling in the rows next to me, feel the heat of the sun pierce the morning cool and begin to hit my skin.
I would look over and a few acres away would be a co-worker on their knees picking salad greens, another methodically harvesting parsley, all contemplative in their own world, immersed in their own thoughts.
As time went on, I would know which rows I harvested, which plants had the best quality and yield. I began to notice how the kale grew in contrast to the sun or rain, or how the caterpillars would only digest the largest, oldest leaves. Even the chard began to have details I never noticed and I began to harvest in a way that nurtured re growth.
Professor Roberts concludes that ”patience itself is a skill" and that we must start teaching “the deliberate engagement of delay” or for many of us, learning it ourselves. She states that the…“very fabric of human understanding was woven to some extent out of delay, belatedness, waiting”.
And this is my favorite part of the article:
“Where patience once indicated a lack of control, now it is a form of control over the tempo of contemporary life that otherwise controls us. Patience no longer connotes disempowerment—perhaps now patience is power."
As we continue to utilize technologies, systems and processes in the new millenium, we need to incorporate the practice of deceleration, or this 'immersive attention’. It could be as Professor Roberts instructs, sitting for three hours in front of a piece of art. Or it could be sitting on a grassy hill somewhere in your neighbourhood watching the leaves fall, maybe listening to the waves hit the shore, taking up a meditative practice, yoga.
One thing I have learned, and am continuing to learn, and I applaud Professor Roberts for stepping out of the norm and pushing this realization to the forefront of learning, is we do need to stop…and not simply smell the roses, but look at the soft flesh of it’s pedals, how the arch of its stem follows the sun, how the stigmas draw in the morning dew and the filament can hold a bumblebee.
What will you do today…to pause and take in the wonder and beauty around you?
David Brooks of the New York Times has written a wonderful Op-Ed titled “What Suffering Does”. It is being shared widely through Social Media with a nod from those who appreciate the experience of suffering and the lessons it can embody.
What suffering does, Mr Brooks suggests, is that people are “clearly ennobled by it” and that the “response to this sort of pain…is holiness”.
Roshi Joan Halifax discusses suffering in length in her book Being with Dying. Roshi Joan looks at suffering as a lotus flower; “the roots of pure white lotus are buried deep in the pond’s dark mud. But it’s that very mud that nurtures and feeds the lotus, making it possible for the flower to open in splendor to the sun.”
“The lotus flower is really our awakened mind, nourished by suffering.”
For those of us ‘living grief’ we don’t have an opportunity to work through our suffering, to walk out the other end. We are 'living grief’ day in day out, suffering becomes ceremonial and an almost reverent experience. Which is why it appears like a holy response.
At some point in living grief you cede, abdicate to divinity, if you want to call it that, or to God’s will, to a greater power. Or maybe you abnegate conventional medicine. The relinquish of outcomes bears vulnerability and provides us the appurtenance of being present, the ’awakened mind’ as Roshi Joan calls it.
I don’t know if my daughter is going to live another thirteen years or die tomorrow. I sit up each and every night, on the side of my bed, looking down at her as her body decides to stop breathing. It has become isochronous.
To practice living grief day in day out, is nourished suffering. And beyond the holy response, and for whatever objective suffering’s purpose is, we do dig deeper and deeper within ourselves; we become the curator of our own resilience.
What suffering does, what suffering is affords us an experience that makes us human, that sheds our walls and can free us, if we let it, from the confines of a world that is more about acquisition than altruism.
I wiggle my toes in the 'pond’s dark mud’ each and every day and I can’t help but believe that my daughter is that beautiful lotus flower that finds joy in the simplicity of the sun, and shines her suffering on all those who cross her path.
Lately, I feel like the grim reaper with death and dying being a prominent feature of many of my conversations online and off. When you are caring for someone who is sick or has a life limiting, life threatening illness death definitely pokes its head in your window. And being part of a palliative hospice death basically sits on your stoop waiting to come in.
What I am learning is that death is not linear. It doesn’t start at one spot and end at another. I guess some people would argue it begins at birth and ends at our last breathe. But when you have a life limiting illness or a diagnosis that is life threatening, like Duchennes Muscular Dystropy, AIDS, certain stages of cancer, or like in my daughter’s case, a rare complex disease, the process of ‘dying’ doesn’t seem to follow any one course. I’d even argue there is no discernible beginning and end.
I bring this up because the last few weeks I have been traversing a slippery slope with Sophia. Her disease process, as complex as it is, seems to have become even more complex. Sophia is suffering from pain, severe pain and while the amazing professionals in our life bind their knowledge and experiences, sophia and I have to traverse lightly through her suffering on a different level. As a mom, I grapple with questions like, “what stage are we at?”, “where is this leading?”, thinking that those answers will ensure the best possible care and support is in place for Sophia medically and physically, spiritually.
The thing is, no one can know the answers. Sophia is in extreme pain and we have been trying a few different techniques and medications to help her. I had the expectations that if we find the right cocktail she would perk up and we would regain a sense of our live moving.
The word ‘palliative’ began its rounds at the same time we had to put Sophia on a drug called Nozinan. Both grabbed me by the ankles like a vice and I couldn’t move.
Palliative…when I hear palliative I think of end of life. I think, here we go, call everyone, death is imminent. Up until now, that has been my experience with palliative. When my dad was palliative, he died shortly there after.
So when the word palliative started showing up in conversations regarding Sophia I was knocked into shock. Sophia’s not palliative, she couldn’t be. Sophia still has moments where she can go swimming, or we take her out for sushi. She giggles and there are times when she still belts out those teen karaoke songs! Sophia can’t possibly 'be’ palliative!!
But one of our Advance Nurse Practitioners began to explain that those who are 'dying’, for lack of a better word, start to instinctively make their world smaller. Sophia stopped going to school a while ago, she is reluctant to leave the house, some days even her bed. She stopped eating food or wanting to eat. Sophia began to withdraw and tuck into herself physically, emotionally and probably spiritually.
Her world has indeed become small…and the only way we have been able to ebb her pain and suffering is to put her on this medication, Nozinan, and have her fall into a deep sleep. I can’t breathe.
In true mom therapeutic form, I started doing research on the word 'palliative’ and began to have open discussions on what this word meant for other people. Most were like me, the word palliative evoked strong feelings around death and dying and the sense of imminence.
The Canadian Hospice Palliative Care Association just celebrated National Hospice Palliative Care Week. CHPCA’s definition of palliative “aims to relieve suffering and improve quality of living and dying.” Wikipedia indicates palliative is a “multi disciplinary approach to specialized medical care for people with serious illnesses.” The origin of the word itself is “under cloak, covert”, “relieving or soothing the symptoms of a disease or disorder without effecting a cure.”
As I wondered aimlessly around the World Wide Web defining palliative it struck me that the word didn’t stand alone. Palliative is always complemented with the word 'care’. And when I had a heart to heart with our own hospice counsellor, she looked at me and softly said, “Bev, you’ve been providing Sophia palliative care for quite some time. Palliative is not a diagnosis, it is a model of compassionate care.”
Palliative is not a state of being…it is a model of compassionate care. In living grief I’m learning to accept that care happens to include supporting Sophia’s rest, her choice not to eat, her desire to hunker down in her room, all comfy under the covers and to use medication like Nozinan to help abate her suffering.
It isn’t easy, palliative is never easy. But our goal is to ease Sophia’s suffering on her journey..
Beverley Pomeroy is an awarded and highly sought after 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 her acumen not only for serving people in need, but also her strength in business management and organizational renewal.