Ideal death

This evening I’ve listened to the amazing Alua Arthur (if you don’t know her work, google Going With Grace and watch her one minute videos on Instagram!) describe her ideal death on a podcast and then also watched a lovely NYT short doc where the paediatric palliative care physician indicates that an ideal death for her is dying as a baby in mom’s arms (no where more surrounded by unconditional love). 

Both descriptions were so beautiful that they’ve inspired me to think about my own ideal death. So far, I’ve come up with the following:

- non medical, surrounded by my people and dog

- knowing arrangements made, no stress or fuss awaits my aggrieved friends/family; passwords all filed, last posts dealt with, obituary pre-written

- sharing favourite memories, laughing at goofy pictures, telling stories

- if my body can handle it, drinking red wine, an excellent cheese and a slice of carrot cake

-ideally in a space with fresh air, overlooking water or mountains

- all family drama dealt with, apologies issued, amends made

- fresh lilacs, vibrant gerbera daisies, hydrangeas 

- cello music or musical soundtrack 

- knowledge that my legacy gifts will have real impact in the world.

I think I can dig into the specifics a bit more, and certainly need to do a lot more practical work in advance care directives but this was a peaceful meditation to undertake tonight. I’d highly recommend it. 

An entire family

An act of hate and terrorism took place this past Sunday in London, Ontario. It is horrific, it is devastating. And there are no words that we can say to make things better for the family members who remain, nor the community who suffers from the reality that targeted hatred is always present. No words… only action can assist. Real change. Full stop. 

"Denied the right to grieve"

A message from the Indigenous Health Learning Lodge at McMaster University: 

"As all of Canada bears witness to yet another Indian Residential School related tragedy, the stark evidence-based findings from the Kamloops Residential School convey perhaps, a harsher reality. This is a hard truth that has been affirmed with evidence. A more somber truth perhaps, is that many Indigenous people; parents, grand-parents, aunties and uncles have known for years but nobody was listening. Sadly, the Tk'emlúps te Secwépemc First Nations have had their truth confirmed. 

Many Indigenous families whose children were apprehended by the church or government and told that they will receive an education, often experienced this loss. They often were denied information about their children’s passing, denied the right to grieve and in some cases denied the request to have their bodies returned to them. As parents and grandparents, it is unfathomable to know that for many, they never even knew where they were buried. The inter-generational impact on the well-being of these families, communities and nations is well documented. A litany of truths has been relayed often firsthand by survivors of those schools. Survivors and families who are still with us.

 

There are many more truths about our lives, our ways, our customs and beliefs and our knowledge systems. We can’t demand belief about these truths but we can ask for respect and pedagogical space without the ever-present demand for western based ‘evidence’. As the university aspires to a more inclusive learning environment, this respect for pluralism will have to be reckoned with. We have and will share our own evidence as the reconciliation process continues to unfold. Our Knowledge Helpers and Elders will continue to guide this work.

 

As this new story is circulated in print, in social-media and tv news hours across the country, thoughts and feelingsof shock and revulsion are emerging. Non – Indigenous settlers and Allies may feel uncertain about how to respond. For those who find themselves reflecting in this way, know that the Truth and Reconciliation Commission of Canada expects us all to take part in the reconciliation work. To bear witness to what happened and to take action."

Being denied the right to grieve... heinous. 

215 of many thousands more

The news that hit Canadian news media over the weekend was of the discovery of evidence of 215 children’s remains at a residential school location near Kamloops, Tk'emlúps te Secwépemc. The Truth and Reconciliation Commission reports that at least 3,213 children were taken from their families and never made it home- and I think we can all imagine it is much much higher. 

For a map of residential schools: 

https://nctr.ca/memorial/national-student-memorial/memorial-map/

For a list of names of those children (the ones who are known):

https://nctr.ca/memorial/national-student-memorial/memorial-register/ 

Tonight, I am remembering all the innocent lives that were lost, and the reverberations of government-sanctioned genocidal practices that continue to be felt today. 

My near-death experience

Warning: graphic details! 

Within 8 months of my daughter being born in 2011, I started having some horrible and embarrassing symptoms including pain, bleeding and incontinence. At first, my health care team chalked these up to a  hemorrhoid due to vaginal birth. After symptoms increased dramatically in severity, we realized it wasn't that. Tests were done, and I was referred to a gastroenterologist and had my first of MANY colonoscopies. What was found was a severely inflamed and bleeding colon, and I was provided with a diagnosis: Ulcerative Colitis (UC), a form of Inflammatory Bowel Disease (IBD).

*Sidebar - 

1) IBS and IBD are very different. IBS stands for Irritable Bowel Syndrome and while it it also unpleasant and affects quality of life, it is not life threatening.

2) Please do not ever mention a colonic cleanse in my presence - we will never ever see eye to eye on this. Just don't. :)

Fast forward two years, to the Fall of 2013, after many failed medications, biologic injections, and treatments (including a research study in fecal transplantation), 8 more colonoscopies, and about 100 lbs of rapid weight loss due to the fact that my system was failing. By December, after being admitted to hospital for almost two months and being fed by intravenous TPN (total parenteral nutrition), my physicians levelled with me: have surgery to remove my colon, or reach a point of no return. I was dying. 

To say this now seems melodramatic to me - it didn't feel this serious when I was in it... but I see now that was my coping mechanism. Keeping a cheery disposition helped me ignore how bad it was in the moment. In fact, in all photos from this time, I am smiling.

But I recall the grave faces of the physicians when they came to my bedside. A new physician was brought in for a third opinion - he sat by my bedside and his exact words are etched in my brain "If you were my sister, I would have told you to have this surgery 6 months ago. Without it, you will not see your daughter grow up." 

Needless to say, I had that surgery before the holidays that year, and then lived with an ostomy for a year and a half longer, having two additional abdominal surgeries to create my new and improved GI tract (a process where a specialized surgeon takes your small intestine and creates a "J pouch" internally to act as a pseudo-colon, and reroutes to your rectum so you can function "normally"). And now, after many years of learning how to live with my new insides, and a few setbacks (including another autoimmune disease), here I am today. Still alive. 

Alive, and living through a pandemic, gaining weight from stress-eating and imbibing a little too much, virtual schooling my 9 year old and seeing others who aren't so lucky, as they die from COVID-19. 

I am grateful. And this is why I also care so much about death and death education. If you read yesterday's post you'll recognize this quote - it feels very relevant for me again today: "...it's actually in facing the darkest realities of life that we find light in them."

I'll do my best to LIVE today, and every day, until my time really is up. 

May 19 is World IBD Day. Wishing all fellow IBD warriors a very good day. 

You are going to die- live now.

 "Suffering and death are facts of life; focusing only on the “bright and shiny” is superficial and inauthentic. “We try to suppress the thought of death, or escape it, or run away from it because we think that’s where we’ll find happiness,” she said. “But it’s actually in facing the darkest realities of life that we find light in them.”"

This is one of the many very quotable passages from a recent article in the New York Times: https://www.nytimes.com/2021/05/14/us/memento-mori-nun.html?campaign_id=61&emc=edit_ts_20210514&instance_id=30859&nl=the-great-read&regi_id=66760862&segment_id=58118&te=1&user_id=d328f2d29afde130ec740d89c9423d30

Many thanks to Jill Nelson for flagging this beautiful article for me! If you're out of scrolling time today and want to read the article at a later point in time - here is my main takeaway: 

You are going to die - what are you going to do today to ensure you're actually living now? 

To be better at empathy, break glass

Sitting in discomfort can be incredibly productive. If you chat with a therapist, you'll know exactly what I am talking about. Counterproductive to this, our society likes happy, non-conflict ridden, non-icky living. We depend on it. It's dependable.

If you ask someone how their day is going, you expect them to say "not too bad, how about yours?". Perfunctory, but dependable. In short, we don't like mess. 

This said, I really do believe that the messy times are the ones that we can learn from. 

Bearing witness to someone else's discomfort is incredibly powerful - giving them the stage, the venue, the opportunity, to be truly seen. " To work toward being more comfortable in our professional lives - to being more empathetic - I think we need to practice. 

"Practice makes perfect"? 

Maybe not... but maybe it could make each of us more ok with the mess, and more able to bear witness to the pain of our colleagues, clients, donors, and employees. 

Here's a few suggestions on how to break your own dependence on the dependable - some exercises and resources that I've found greatly useful in my journey. If you enjoy podcasts, recently I've started listening to Griefcast. 

It's lovely and provides a stage for grieving individuals to share stories about their loved ones (talk about legacy!). In an episode I just listened to (episode #139 with Rev. Richard Coles), the grieving individual was speaking about the difficulty of grief during the pandemic. He used the following phrase "the pageant of life gives you little hand-holds". This is the absolute best way I have heard to describe how truly difficult living with grief in the pandemic times must be. 

If you prefer to scroll through twitter, I'd recommend the posts by @FacesofCOVID . The posts are like reading little bite-size obituaries. Those who are grieving the individuals who are featured often comment on how meaningful it is to see their loved one featured on this thread - and that is the magic of bearing witness to someone else's pain. 

There are a ton of other resources available as well; if you're seeking to get a little more empathetic in your professional life, I'd suggest starting with disrupting your own comfort level as a starting place.