A Caregiver, Patient and Doctor reflect on COVID-today

It is important we -as a society- communicate, with empathy and acceptance. Especially in this time of isolation and pandemic. The following is a reflection of what a Caregiver, Patient and Doctor think, see and feel about COVID and society today.

If these words strike a chord with you, please reach out and tell us on Facebook, Twitter or Email.

Someone listening needs to hear what you have to say.

Through the Covid Lens

Jana Bűhlmann-Caregiver & Patient Critical Co-op Director

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Every morning I awaken to some version of fight or flight. I suspect I am not alone in this, as we take to bed with us the reality of the Covid-19 pandemic.

I confessed the above to a fellow healthcare advocate during our first week of isolation – as we chatted over the phone – and we compared notes about how the lens of Covid-19 feels as advocates, from the perspective of a caregiver and that of a patient. It was a relief for us both, to voice what we carry each day.

We want to share these views, as advocates, as people who have experienced the trauma of disease, and as citizens of this planet living in the thick of a pandemic. We also thought it critical to ask a healthcare practitioner to join us in viewing through this lens, and so alongside Claire Snyman and myself – Jana Bűhlmann – we give you the words of Lawrence Yang. I feel blessed to call both of these humans my friend.

When my husband died almost three years ago, I learned things about grief that I had not to date. One of the most important beliefs that I carry with me now, is grief author Megan Devine’s idea that we carry grief just as we do love. Grief is not something we overcome or let go…The fight or flight triggered by Covid-19 awakens the trauma of my husband’s death, regardless of the healing I have done to date. It feels very important to be honest with myself about this.

I identify as both a patient and caregiver advocate, as I live with an autoimmune disease. But it is the caregiver in me that raises her voice as we move further into this pandemic. I ask myself routinely, how I am feeling? Is this anxiety, for which I also carry a diagnosis? My body tells me it is activated, ready to get to work. But what work am I doing?…My daughter is well protected; mama bear is in the house. I feel my wheels spinning as I watch my healthcare provider friends and acquaintances prepare themselves for the front line. For battle. For the unknown.

My phone tells me my screen time is down, but my eyeballs feel like sandpaper. I know I am not alone in this feeling as a general member of society, but I don’t feel like baking bread or binging a show or playing a board game to balance. I want to get in the trenches, so I am brainstorming sources of now sacred masks and hand sanitizer for redistribution to hospitals and other care facilities. I feel like a police officer standing in the middle of an uncontrolled intersection, except that I seem to think it possible that all lanes might move at the same time.

And yet, as I watch my local civic community gather itself and identify those in need and those able to help, I feel myself step back. There is a relief in seeing I know my own well built and conscious boundaries, and yet there is also some guilt and surprise. But this is not my lane, and the guilt dissipates in reading daily conversations through which my neighbours are taking care of one another. I am self sufficient…but I am also not an island. I remind myself that these neighbours are there for me too. Meanwhile I am staying focused on my abilities as an advocate, alongside my paid work, managing a household, and parenting a teen.

So. My fellow healthcare advocates, who speak from a caregiving perspective…

What is Covid-19 awakening in you?
How does this pandemic speak to what brought you to advocacy, and the trauma that sits behind it?
How are you activating and what do your boundaries ask of you?

Notice I haven’t asked about your self care, because we caregivers know a manicure is not the balm. Please be well. I hope my words have reminded you that you are not alone.

Claire Snyman, Patient

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A week ago I had a frank discussion with a dear friend as I wondered why I was feeling almost calm during the storm of covid-19. During our discussion, it became clear to me that this was stemming from my lived experience.

Ten years ago I was dealt the uncertainty card of a rare brain tumour. Two years after my diagnosis, I had life saving brain surgery when my brain tumour went rogue. Somehow my brain had become hard wired to deal with uncertainty. I’m not saying I’m an ostrich with its head in the sand. I’m well informed. I’m reading the news. I’m being respectful and responsible. But somehow I don’t feel an overwhelming sense of panic and fear. My brain is like a muscle that has been trained over time to deal with uncertainty. Uncertainty and change have become part of our lives over the past decade.

However, even though my brain may be hard wired for uncertainty, there are still things that do dwell in the back of my mind. As a patient, one of those things is access to care. In the past, I have had various challenges with access to care. During the covid-19 pandemic my concerns are; if I or my family or loved ones need access to care, is it going to be there? Am I going to be able to access it in a timely manner, am I going to be able to get the tests I need, the appointments – when all the resources are being deployed (for a very valid manner) to the covid-19 response? I am sure I am not the only patient or caregiver who may be mulling these thoughts.

Over the past ten years, I have had to learn to be a very strong advocate for my health and health care in order to navigate the healthcare system and get access to care. I feel this is going to be important for me to revisit during this time.

Each day, I sit in front of my computer, connecting with the patient, family and caregiver community in Canada and around the world. I’m keeping working where possible, being a mom, wife, writing, brainstorming, being a patient advocate, cooking and taking time out. I also have to be very mindful of my brain capacity. At the best of times, balance in my life is now critical. In times like these, caring for my brain is crucial. As a patient, the fine line between over involvement in times of crisis and self preservation is key.

And so, I go back to the learnings from my psychologist who helped me through my PTSD after my brain surgery…

Look at what you can control and what you can’t.
Be present.
Practice gratitude.
Look outward and not inward.

I’m taking it day by day. Step by step.

Lawrence Yang, Practitioner

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My heart is so fucking full right now.

I just got home from the hospital. My patients in hospital are doing well, and most outside the hospital seem okay as well. The disturbance of this pandemic has made their usual chronic troubles frivolous for the time being, or so they graciously choose to view them. The hospital patients I am caring for don’t have Covid19 symptoms, even though that doesn’t mean much since asymptomatic transmission is a known truth of this virus. The hospital is much quieter than normal. This day last year, we had hundreds more people coming to our emergency room than we did today. This tells me that the community knows that Covid19 is lurking on their way to the hospital and in the hospital. The crucial public health messaging is finally getting out there.

My heart is full because I’ve seen such amazing giving in the past few days.

Some guy approached me with prototypes of an aerosol box made of plexiglass that I shared with my colleagues who intubate so that they might reduce their chances of covid19 droplet contamination.

A dentist friend I know donated 400 masks and 10 litres of alcohol based hand sanitizer to ensure that my colleagues at the hospital felt more secure and that men crammed in a recovery home were more safe.

I’ve had 5 different people offer to donate masks to me and my colleagues.

My sister who teaches elementary school is planning out a web based curriculum and a wifi enabled device donation program for kids who can’t afford their own so that they can have continuity of learning from home while schools are all closed.

A Vancouver based footwear company offered me and my colleagues a free pair of waterproof sneakers today. A pizza restaurant offered me and my colleagues free pizza “safe dropped” to the hospital. Multiple eateries have health care worker discounts! Every day at 7pm, people lean out of their high rises in downtown Vancouver and cheer for us.

My physician friends are intentionally posting messages of hope and humour on their facebook, whatsapp, and instagram chats…despite knowing that the “end game” requires herd immunity…and herd immunity requires 60% of the population to be infected and survive…60% of 7.7billion (covid19 has gone global) is 4.62 billion people…and with a 0.5% death rate, that means potentially, 23,000,000 people will die before the covid19 endgame. And if it mutates well…..

I’m really on the verge of tears as to the love that’s going around the community and also trying to grasp the enormity of the global shift we are going through. I have a sense that everyone is taking this moment to reflect on their lives differently. I have a sense that everyone is asking themselves, “what is REALLY important to me right now?”. I’m assuming that for some, it’s family. I’m assuming for some, they’re feeling a disruption in their sense of purpose and meaning….for those not “allowed” to work as much in this pandemic, maybe with the veil of “work purpose” removed from their eyes, they’re seeing themselves more starkly, more clearly…they’re finding themselves and their “purpose” in a new way.

The artists on social media have been lovingly producing on an “uptick” and giving so hard!! So many free live online intimate concerts from major artists, more acapella performances, and more live collabs on IG. The music is lovely.

Hospital conference call meetings have gone up by a factor of 30times; where I used to do 2 hours of hospital meetings every 2 weeks, it has increased to almost an hour per day, with tonnes of whatsapp chat time logged in between.

Physicians are inundated with the combination of continued clinical duties as well as needing to keep up with their cell phone notifications. Maybe this “bing” will be the next PPE guideline that will save me?!

Personal protection equipment (PPE) like masks, gowns, face shields, and gloves are highly coveted and guarded right now at the hospital. We’ve appointed guardians of the masks and begun to track their usage. Tragically, we suspect that people have stolen from the hospital supply over the past 2 to 3 months in anticipation of the scarcity of the items and their jump in life protecting value. Leadership teams provincially and locally are doing everything they can to increase our stores of PPE, but they are not audacious enough to state emphatically that we need not worry about our PPE “burn rate.” We are all advised as physicians on the frontlines of covid19 to stretch the use of one mask over multiple encounters – the whole shift if possible – and just be super mindful of hand hygiene when handling the masks.

Our hospital leadership conference call today ended on a profound note…one that I never imagined that I would witness. Essentially, our beloved leader, an intensivist said, with zero jest in his tone, (my paraphrase): “If I die, who will assume my command…” I wanted to cry….someone stood up (spoke up), a powerful lady soldier of a physician and confidently said, “I will do it, don’t worry, I can do it” (my paraphrase). When the conference call was over…this courageous physician thought we’d all hung up…but I was stunned and lingering on the call processing what I’d heard and I heard her speak some words to our creator….

Physical Distancing, not Social Distancing

If Jana, Claire and Lawrence’s words struck a chord with you, please reach out and tell us on Facebook, Twitter or Email.

Someone listening needs to hear what you have to say.

PJ Mierau, Managing Director