Hope for COVID Long Haulers ...

 

No winter lasts forever,

no spring skips its return. 

Hal Borman 

 

 

Hello, Everyone,

A belated Happy New Year to you all! 

A new year always fills me with hope, even in these grim and trying times. (When I say hope, I just mean the belief that tomorrow could be better.) One of the things that gives me hope, this year, is the rolling out, however bumpily, of the new COVID vaccines. I also find hope in the email updates I've been receiving from an American-based organization called  Survivor Corps.

Survivor Corps connects, advocates for and provides information to people suffering from longterm COVID effects (the "COVID long haulers") and their families, colleagues and friends. They have a have a strong medical advisory board, over 150,000 members in their Facebook Group and members from around the world all working to overcome the impacts of COVID-19.

In their own words, this grassroots organization:

• continually connects, supports, educates and motivates those affected by COVID-19,
• mobilizes as many as possible to support ongoing scientific, medical and academic research,
• donates plasma,
• works to find a cure and
• supports the development of vaccines.

They add that they hope to "get people back into their communities and back to work, all the while fostering the spirit of unity and solidarity that is urgently needed during this time of crisis".

The organization offers services including an archive of webinars related to long COVID, a list of COVID-friendly physicians and an evolving list of Post COVID Care Centers including three in BC at St Paul's Hospital, Vancouver; Vancouver General Hospital, Vancouver; and Jim Pattison Outpatient Care and Surgery Centre, Surrey. (These clinics require a referral from your physician.)

https://www.youtube.com/watch?v=yGlkz-l0ZCw&feature=youtu.be 

I'm hopeful that initiatives like Survivor Corps, the vaccine programs and the post-COVID clinics will go a long way toward making the next year safer and more tolerable for all of us. (As will our own continued patience and cooperation with all the COVID public health guidelines.) 

While I don't believe that normal life is "just around the corner", I am hopeful that by late August I will be sending out brochures for Chronic Sorrow workshops for the new carepartners of COVID long haulers (amongst other caregivers) and Caring On Empty workshops for the helping professionals who have risked their health and their lives to keep us safe and well.

Let me close this "hopeful post" by sharing a poem of hope by Jan Richardson, one of my favourite writers of blessings:

Blessing of Hope

So may we know

the hope

that is not just

for someday

but for this day -

here, now,

in this moment

that opens to us:

hope not made

of wishes

but of substance,

hope made of sinew

and muscle

and bone,

hope that has breath

and a beating heart,

hope that will not

keep quiet

and be polite,

hope that knows

how to holler

when it is called for,

hope that knows

how to sing

when there seems

little cause,

hope that raises us

from the dead -

not someday

but this day,

everyday,

again and

again and

again.

From "The Cure for Sorrow"

Let there be light ...

 

There is always a glimmer in those

who have been through the dark.

Atticus

Hello everyone - greetings of light-in-the-darkness to you all!

I would not have believed Atticus' ancient words in the dark, depleted days following years of family caregiving, the death of my husband, my mother's death 3 months later and all the mind-numbing tasks that inevitably follow the death of loved ones. I had given more than I had to give and was utterly spent. For months after the first rounds of bereavement tasks were complete, I did little more than sit in a chair by the window and breathe. And even that was an effort some days.

It was close to a year and a half before I regained sufficient physical strength to engage my grief in a meaningful way. And, to be quite honest, there were many days when I wished I had died, too, I felt so bereft and had so little life force left to fuel my living.

Some would have said I was depressed but, in fact, I was exhausted, grieving and traumatized. But, deep within me, invisible to the naked eye, healing was already beginning to take place. First came the s-l-o-w restoration of physical strength wrought by weeks and months of simple rest, good nutrition and short daily walks. (Though those initial "walks" comprised nothing more than a few steps to the front door where I stood on the porch with my face to the rain.)

Then, in the long silent hours of sitting by the livingroom window, staring at the garden, came quiet opportunities to re-connect with my Self, my memories, my feelings and the many sources of strength greater than my own - the healing rhythms of nature, the beauty outside my window, the wisdom gleaned from poetry and prose and a deep spiritual connection with Mystery. As my energy rose sufficiently to reconnect with people, the love of cherished relationships, old and new, sustained me through new choices in life and vocation. The glimmer that had desperately endured the darkness was fanned to a new brightness by my willingness to let healing take as long as it took and to accept the loving support of family and friends.

For some of you, 2020, (this strange, COVID, "year-out-of-time"), is ending in a similar state of grief, trauma and depletion.  You are full of unexpressed pain and sorrow and have not an ounce of strength left to give.  It feels like there is nothing left of you or in you. But please don't allow that to be your truth for long. Choose, instead, to gently and persistently fan the flame of your own life force.  Seek the things that have renewed you in the past and allow them to do it once more - even in the smallest "doses" and most unusual ways, given COVID's limitations.

As Atticus knew, way back in second century Rome, there is a tiny glimmer left in all of us who have been through the darkness, be that darkness the countering of COVID's grim effects, the fearfulness of not being able to work, the anxiety of becoming ill yourself or the exhaustion of caring for loved ones at home who were already ill or injured before the pandemic. This remaining glimmer can be buried so deeply that it seems all but lost - but it IS still there. And, with gentle fanning and exquisitely tender nurturing, it can break into flame and give light once more - first to yourself and then to the world around you.

When you do choose to heal, you may find you have sufficient energy to fan your own flame but, more likely, you will need some help. So, please do ask for that help. Even if it's hard at first. (You may have noticed that we nurturers are not always great at asking for nurturing, ourselves.) There will always be others who have walked the healing path before you who are willing and able to help you find your way.  Keep looking until you find the right ones for you - supportive friends, somatic therapists, spiritual advisors, meditation leaders, support groups and others. This care and support will make all the difference.

Festivals of light across cultures - Diwahli, Winter Solstice, Christmas, Hanukkah and others - remind us that there IS light in and after the darkness and that it can be fanned to a new intensity with time, care and exquisite attention. 

So, at this particularly dark moment in time, for each of us individually, and as a wider community, "Let there be light ...".

Living With COVID Grief ...

Grief is itself a medicine.

William Cowper

Hello, Everyone,

The COVID season of 2020 has been a season loss and grief - and it's not over yet. Loved ones have become ill and died. Jobs have been lost. Professional aspirations have disappeared at least temporarily. Human connections have been disrupted. Life plans have been altered. And even as society reopens, COVID-related change and loss continue.

As we cautiously begin to leave isolation behind, more losses accumulate. Those few hard-found gifts of COVID - a slower pace, more time with loved ones, reduced commute time, free parking at work, chances to pursue neglected hobbies and activities, giving and receiving more focused and intentional emotional support, opportunities for reflection, the surfacing of deeper values - threaten to drop away as life changes pace once again. 

Grief is also tied up in our imaginings about the future and the possibility of losses to come. We face the distinct possibility of a "second wave" as fall and flu season approach.  Will a loved one become ill as we open further and return to school? Will we become ill ourselves? Will we lose our jobs? This is called anticipatory grief and it adds yet another layer to our sadness, anger, anxiety, fear, guilt and envy.

With all these COVID losses compounded by contextual losses such as economic insecurity and systemic racism around the world, there's more than enough grief to go around. So, the trick is to find the right conditions in which to grieve our losses well. Because grief is so individual, "the right conditions" will differ for each of us but here are a few general practices that might help:

1.  Acknowledge that you've had, and will have, many losses during this COVID season of life.  Every change - positive or negative - brings loss, and grief is our healing response to loss. We grieve automatically, provided nothing gets in the way. Becoming aware of our losses and accepting their presence makes space for our grief, direction and focus to our mourning and provides opportunities for others to support us.

 2.  Pace your grief when you have multiple losses. It can be overwhelming to try to grieve everything at once. Take baby steps. Make space for grief, one small piece at a time. (And know that you may return to the same loss over and over again before it feels integrated.)

If grief begins to feel overwhelming to you, try self-regulation skills like breathing practices, grounding exercises or physical shaking to calm you when you're  "amped up" and anxious or enlivening practices like engaging your five senses, walking meditation, squeezing  your forearms with the opposite hands when you start to feel "shut down" or numb. 

2.  Find a sanctuary where you feel safe and comfortable expressing your grief emotions. If you're able to do it, give your grief feelings freedom to arise spontaneously. But, if you can't because it seems neither safe nor possible, try identifying a sanctuary where you can retreat intentionally to take down your guard and let your inside and outside match. This creates intentional space for your hardwired grief response to do its healing work. 

For some, this sanctuary will be in the arms of a loved one who lives inside your bubble; for others it will be found alone in the car, the shower or in bed at night; and for others still, it will be within a formal ritual or ceremony (in person or online) or out in the beauty of the natural world. What matters is that you feel safe enough to allow your grief to surface for a while.

3. Express your feelings in ways that feel natural and comfortable to you. There is no "right way" to grieve.  And you don't have to cry to prove you've grieved. The fine arts provide many possibilities for expressing grief - story-telling, journalling, writing poetry or letters, listening to or playing evocative music, drumming, dancing, singing, collage, drawing, painting, sculpture, pottery, photography, fibre arts or woodwork. Use avenues of expression that feel natural for you. You don't have to squeeze yourself into someone else's idea of "proper" grief expression.

If your body feels tight with emotion that you want to release but can't, you might try listening to music, watching movies or reading poems that have triggered your tears in the past. They will likely do the same thing again.  (Repeated cycles of Truly Madly Deeply, Shadowlands and A Rumour of Angels helped release my frozen tears through seven years of chronic sorrow and more years of bereavement grief following my husband's death.)

Physical motion can also do much to diffuse pent-up emotion. Walking or running in nature, dancing or engaging in individual sports can all help.

If you are yearning to share your grief with another human being but feel constrained by the  COVID restrictions, try reaching out to loved ones, a therapist, a spiritual advisor or a support group through appropriately secure video meetings like Zoom or Skype, phone calls, texting or social media. Handwritten letters, though seemingly old-fashioned these days, can offer a particularly personal and connected way of sharing your grief.

4.  Create rituals that support and facilitate your grief.  Grief specialist, Alan Wolfelt describes grief rituals as "symbolic activities that help us, together with our families and friends, to express our deepest thoughts and feelings about life's most important events". A ritual doesn't have to be fancy or complicated and it can be experienced individually or in a supportive group.

Examples of grief rituals might be to: 

a.  Have a physically-distanced or Zoom meal where each person brings an item that symbolizes their life before COVID and another that symbolizes life since COVID. Focus discussion on the meaning and feelings attached to each item. Listen respectfully to each person's reality.

b.  Create art in memory of life before COVID and share it and your feelings with others.

c.   Light a candle to hold space for your grief and write a letter to your old life, expressing how much you miss it.

d.   Use ceremonies with sage, incense or fragrant essential oil to cleanse or let go of the old life and open you to the new.

There are as many rituals as there are people - let your imagination go and create what will work best for you. 

However you decide to deal with the changes and loss of COVID-19, try to honour yourself and your losses by making space for the "good medicine" of your grief.

The Paradox of Grief and Gratitude ...

Wherever there's change, there's loss

and wherever there's loss, there's grief.

Bill Bridges

Hello, Everyone,

I have used the quotation above often in workshops and writings and here it is once again. Appropriate for the times, I think ... 

So much has changed in recent months and these changes have brought with them loss and grief in abundance, especially for family caregivers already coping with chronic sorrow and helping professionals carrying years of cumulative grief.

Since the pandemic has taken hold,  family caregivers have lost already-scarce freedoms, resources and supports -  the coffee shops that once provided a brief haven at the end of a morning's respite, the familiar care aides who knew the needs of an ill loved one and didn't require training each time they arrived, the day programs that offered respite as well as support and advice, the volunteers who helped with transportation or yard work or exercise regimes or meals, the warmth and encouragement of a simple hug. Some caregivers have had the worst of anticipatory griefs - standing by as loved ones with worsening COVID symptoms were transferred to acute care facilities, perhaps never to be seen again.

Healthcare professionals have also carried the weight of grief. They've grieved the loss of patients they had hoped to save, relinquished long-held standards of care and infection control, worked without essential equipment, given up contact with their own families, forsaken any semblance of a balanced personal life and mourned the loss of cherished co-workers and friends.

And then, together, we've felt the collective grief of watching as our systems of work, healthcare, education, transportation and economics wavered under the weight of the virus. The tangible losses of unemployment, closed churches and mosques and food insecurity have been multiplied by the broader intangible losses of predictability, control, justice and our assumptions that we could protect the weak and the vulnerable.

This COVID-19 grief is natural and expectable and it will come in waves for a long time after the losses cease. Grief is the way we heal from broken attachments - and it happens automatically provided nothing gets in its way. Grief is a turning inward to reflect, to feel, to recalibrate. There are resources to support this highly individual healing process and we will explore some of them next time.

Paradoxically, the losses stemming from the COVID virus, and their attendant grief, are often accompanied by a sense of deep gratitude. There is something about walking at the edge of life that brings authentic blessings into sharp relief - spring blossoms in a time of death, the kindness of nurses holding phones to unite families in their last goodbyes, messages of support and encouragement painted by children on apartment windows, meals left on doorsteps, 7pm clapping and cheers as healthcare workers change shifts, songs that connect the isolated. We can draw upon this natural pairing of grief and gratitude to nurture ourselves during difficult times.

Brother David Steindl-Rast, the Austrian founder of A Network for Grateful Living and a 93 year old survivor of the Nazi occupation, is a beloved teacher of the practice of gratefulness. In a 2016 interview with Krista Tippett, he said,

To open your eyes and know another day - we can't take it for granted. In my youth, we couldn't take it for granted because every night, the bombs fell. There are all sorts of reasons why you (might not) see another day, and you do. And that's a wonderful thing."

His words could apply equally to these days of pandemic.  The practice of gratefulness is not about being grateful for the pandemic, itself, nor for the numbing pain and despair of these times. Nor is it about avoiding or minimizing our sadness, anger, fear and confusion.  Rather, a gratefulness practice offers the opportunity to experience more than one feeling, in full, at the same time - to know gratitude at the same moment that your heart is breaking with grief. To know sorrow and joy in the same breath.

A gratefulness practice allows us a pause to heal, grow and reconnect with ourselves, others and what or whomever we hold sacred. It doesn't take away our grief but it does help to balance it. So, when you wake in the morning or before you go to bed at night, take some time to think of - or,  better yet, write down - the things for which you're grateful. Some days there will be a long list and other days, as gratitude writer, Sara Breathnacht, says, the only thing you'll be grateful for is that the day is over. Either way, recording your gratefulness will not only help balance your grief in the moment, it will provide a wealth of positive memories from which to draw strength in the future.

Keep well, everyone! I'm grateful for all of you!

Caring Through COVID-19 ...

You Deserve Love.

Anonymous

Hello Everyone,

COVID-19 has turned life upside down for all of us including, and perhaps especially, family caregivers and helping professionals. While these two groups already have PhD's in caring for others through times of uncertainty, even their cache of coping strategies can feel strained by today's circumstances.

As many of the things modern humans count upon to be solid and unassailable disappear, helpers, like everyone else, can become anxious and frightened and lost and confused. The earth shifts beneath our feet. We grasp for something solid to hold on to but can't seem to find it. Little makes sense. In our shock, we lose our bearings. Everything is affected.

An early response to this kind of crisis is to reach out for control, to try to make the uncertain certain again. As we slowly realize that we're living a new reality and can't return to "normal", we begin to search for ways to cope. Depending upon our histories and personalities, some of us withdraw and others reach out. Some hoard toilet paper and others pray. Some tell stories of light in the darkness and others share rumours and tales of doom.

Fortunately for me, I made two small discoveries this week that offered a positive pathway for coping. This path is one with which you're all familiar - the path of caring - and the two things that reminded me to care were an anonymous message and a poem. Let me share them with you.

I noticed the anonymous message during a solitary early morning walk through the deep ravine behind my home. The clear sky had brightened though the sun's rays had not yet crossed the edge of the ravine. As I walked down the steep trail through dark evergreens and early spring growth, I came to a wooden bridge crossing a rushing stream. Halfway across the bridge, I noticed, on my left, a torn piece of paper, damp with dew, anchored to the railing by a small rock. On it, someone had written in pencil the words, "You Deserve Love." You Deserve Love - a simple reminder of how important it is to treat ourselves with love and care through difficult times like these.  I'll never know who scrawled this message on a torn bit of paper and left it on a wooden railing for all who passed by but I'm grateful that they took the time, and cared enough, to do it.

The second reminder to care came in the form of a poem written by a Father Hendrick, OFM, whose personal details are also unknown to me. I tripped over his writing in an article by a West Vancouver priest who had returned from doing volunteer work in Assisi, Italy just before the borders closed. The poem goes like this:

Lockdown

Yes there is fear.

Yes there is isolation.

Yes there is panic buying.

Yes there is sickness.

Yes there is even death.

But,

They say that in Wuhan after so many years of noise

you can hear the birds again.

They say that after just a few weeks of quiet

the sky is no longer thick with fumes

but blue and grey and clear.

They say that in the streets of Assisi

people are singing to each other

across the empty squares,

keeping their windows open

so that those who are alone

may hear the sounds of family around them.

They say that a hotel in the West of Ireland

is offering free meals and delivery to the housebound.

Today a young woman I know

is busy spreading fliers with her number

through the neighbourhood

so that the elders may have someone to call on.

Today Churches, Synagogues, Mosques and Temples

are preparing to welcome and shelter the homeless, 

the sick, the weary.

All over the world people are slowing down and reflecting.

All over the world people are looking at their neighbours 

in a new way.

All over the world people are waking up to a new reality. 

To how big we really are.

To how little control we really have.

To what really matters.

To Love.

So we pray and we remember that

Yes there is fear.

But there does not have to be hate.

Yes there is isolation.

But there does not have to be loneliness.

Yes there is panic buying.

But there does not have to be meanness.

Yes there is sickness.

But there does not have to be disease of the soul.

Yes there is even death.

But there can always be a rebirth of love.

Wake to the choices you make as to how to live now.

Today, breathe.

Listen, behind the factory noises of your panic.

The birds are singing again,

The sky is clearing,

Spring is coming,

And we are always encompassed by Love.

Open the windows of your soul

And, though you may not be able

to touch the empty square,

Sing.

Father Hendrick, OFM

So, two synchronistic reminders to care well for ourselves and to notice and care well for others. Could there be a better wisdom path in these days of uncertainty?

And as we practice caring for ourselves and others, let's also remember to extend our deepest regard and appreciation to all who sustain our caring in these difficult times - family, friends, colleagues, inspirational writers, spiritual teachers, poets, artists and, especially, the physical, mental and spiritual care providers who put themselves at risk every day to keep us well. Equally, let's remember to follow ALL the current public health directives so we're here to care for the years to come.

Keep well, everyone, and please do your best to nourish yourself and others so we can all keep on caring ...

A New Workshop: Chronic Sorrow: The Recurring Grief of Family Caregivers ...

Sometimes you just need a good cry in the shower.

Anonymous

Hi Everyone!

I'm excited to announce the launch of a new Caregiver Wellness Community Workshop -  Chronic Sorrow: The Recurring Grief of Family Caregivers.  It will be held on Saturday May 30th  from 9-4pm (registration at 8:30) at the Granville Island Hotel in Vancouver, BC. The tuition is $210 (includes handouts, continental breakfast, light lunch, breaks and GST).  Brochures with registration forms are available at caregiverwellness@shaw.ca.

Family caregivers grieve many losses and they tend to grieve alone - in the shower, in the car, in the laundry room, on solitary walks. You grieve because your loved one's serious, permanent illness or injury has changed everything. And with each change comes loss and with each loss comes grief.

Studies, so far, suggest that up to 80% of family caregivers experience recurring episodes of variably intense grief continuing from the time of their loved one's diagnosis until that loved one's death. This grief does not necessarily diminish over time like grief after death. Rather, it can increase in intensity and frequency as time goes on. This caregiver grief is called Chronic Sorrow.  (Chronic Sorrow is also experienced by people who have a serious permanent medical condition, but in a slightly different way.)

Chronic Sorrow is a normal response to loss without a foreseeable end. It is not depression or complicated grief though it is sometimes misdiagnosed as such. It includes not only feelings of sadness but all the emotions of grief - anger, guilt, envy, anxiety, fear, loneliness and others. These grief emotions are triggered whenever something reminds you of the discrepancy between how things are and how they "could" or "should" have been had the illness or injury not occurred.

Chronic Sorrow  cannot be "cured" but you can learn to live with it more comfortably and that's what this workshop is all about. It had a "test run" with the family caregivers at the Children's Organ Transplant Society and the Starlight Foundation last spring to very positive reviews and now it's here for you - anyone who provides physical or emotional support to a person with a serious, permanent medical condition, physical or mental.

Space is limited so please register early to avoid disappointment. The registration deadline is May 15th.  

If you have questions, you can contact Jan at caregiverwellness@shaw.ca or (604) 297 0609.

Hope to see you there!



*** I'm sad and disappointed to say that all Caregiver Wellness workshops are postponed until at least the fall due to COVID-19. ***

Re-dedication ...

It's never too late to be who you 
might have been.

George Eliott

Happy New Year, Everyone!

Today, the beginning of a new year and a new decade, is an opportunity to re-dedicate ourselves to the things that matter most to us.  In this threshold space, we can take a moment to remember - or reprioritize - the core values by which we want to live our lives.  And, having done that, we can set an intention to act in accordance with these values throughout the New Year.

Caregiving can greatly limit your ability to pursue the external goals you've set for your life, to live the life you were "meant to live". In fact, this can be one of the major losses underlying a family caregiver's Chronic Sorrow. However,  the inability to pursue external goals needn't keep you from re-dedicating yourself to inner goals. Do you ever wish you could be kinder, more compassionate with yourself and others, more honest, calmer, more loyal, more open-minded, more balanced, more trusting, more trust-worthy, more patient, more empathic, more courageous, more consistent, more loving ..? The list of possibilities goes on and on, depending upon the things you hold most dear.

Why not take a moment, now, to recall all the values by which you would like to live. Then look at your list and choose the top one or two you would most like to guide your life in the coming year.

Once you have chosen these core values, allow yourself time to consider how they would look, acted out in your day-to-day life. What, exactly, do you want to re-dedicate yourself to doing or being? What baby steps might you want to take toward strengthening the expression of these values in your life?  The answers to these questions will become your intentions for the New Year.

We know that rituals can help to solidify, strengthen and sustain our intentions, so you might like to go on to create a simple ritual to formalize your re-dedication to living by your values. One such ritual might be to:

1.  Find a quiet space

2.  Light a candle

3.  Notice the pattern of your breathing for a few minutes and then imagine your chosen values filling and strengthening you on the in-breath and pouring out into the world on the out-breath

4. After you've been sitting with your breath and values for sufficient time, make a positive verbal and written re-dedication of your intentions for this new year. Keep the paper close at hand in the days ahead as a reminder to act congruently with your values.

And as a way of following through with your New Year's re-dedication, you might also begin to  briefly ask yourself the following questions at the end of the day:

1.  Where were my actions in line with my values today?  Where were they not?

2.  Where they were not, how might I adjust things tomorrow?

3.  What more can I do, in baby steps,  to bring (your chosen values) more fully into the world?

(Now, being a human being, don't expect yourself to be able to  act according to your values 100% of the time. When you  mess up, just gently forgive yourself, apologize where necessary and then begin again.)

Just thinking through a conscious process of re-dedication like this will help you to live a more authentic life in 2020 and to notice more quickly when compassion fatigue, burnout, accumulated grief or moral distress are drawing you away from what matters most to you.

A very Happy 2020 to each of you!