Hypochondria

I've had my fair share of health concerns, with a couple of very rough years after my daughter was born. I have been diagnosed with two chronic conditions; these are now under control.. for the moment at least, but with autoimmune diseases, one never knows.

So, needless to say that I find myself falling into hypochondria every once in a while. While I am sure that I am fine, it also wouldn't be completely unexpected to be diagnosed with another autoimmune disease (various autoimmune diseases tend to present together, so my docs and I are always on the lookout).

For me, it helps drive home the fact that one never knows... Most of us won't get to choose what trials we'll be dealt during the poker game of life, or when we die. We won't have a say in the timing of health concerns or deaths of our loved ones either.. and we will never know the hand of those around us either.

All this to say that in the game of life, we really need to be patient and kind. Go easy with each other, people. When it's you that has the shitty poker hand, you'll be happy you did.

Celebration IN life

One week ago, I had the honour to attend a beautiful gala celebrating the #Juravinskilegacy (if you don't know about this impactful gift yet, please cut and paste that hashtag into your browser and read the full details!).

At the celebration, it really felt like a wedding-like atmosphere. Charles and Margaret were centre-stage, speeches were made in their honour, and there was even a first dance. And Charles indicated that they really felt this was their very own celebration of life.

How great is that?! A celebration of life, while alive.

I hope that this a trend that catches on. It was simply magical: a way for the community, friends and family to tell Charles and Margaret what they meant, how honoured and loved they are.

All the messages we would love to share with people, but seldom do in lifetime.

Rapport building - F.O.R.M.

I recently attended a session on building rapport and the academic who presented spoke about F.O.R.M. (Family, Occupation, Recreation, Motivation)

The theory goes that these are the points upon which most of us start up our conversation, but that it is only through authentic curiosity to what the answers may be that you might come across genuine rapport being established. The key is to go into conversations without pretence and to be vulnerable in your communication.

This being said, rapport building could be a potential mine-field if a death is mentioned under "F" or "M"... and how real we are in reaction will really dictate how the relationship unfolds.

How can we always be at the ready, whether at the grocery store or attending an office event to ensure that we can be vulnerable enough to ask the type of questions that may elicit grief-laden responses, and encourage ourselves to be ok with the authentic uncomfortable moments that may arise when we're entrusted with those details? 

Death Café

Have you heard of the Death Café movement? A Death Café is exactly what it sounds like. You attend a café-type atmosphere (somewhere that serves coffee/tea and cakes/treats) and chat about death. With strangers and no set agenda.

Easy enough - but would you be able to engage? I'm hoping to host a Death Café or two in the next few months... I'll keep you posted. 

In the meantime, check out the origins and see if there is one happening in your area: https://deathcafe.com/what/

Book review: Your Digital Undertaker

Head on over to the CAGP-ACPDP blog for my book review of Sharon Hartung's book, Your Digital Undertaker:

https://www.cagp-acpdp.org/en/blog/where-will-my-stars-go-a-review-of-your-digital-undertaker-exploring-death-in-the-digital-age

Stick families

If you go to any parking lot, you'll undoubtedly come across a car with a stick family bumper sticker. These became mainstream a few years ago, and now have inspired a new batch of stickers stating a myriad of passive aggressive sentiments along the lines of "I don't care about your GD stick family".

I think these family bumper stickers became popular because, in the era of social media, we're used to proclaiming all details of our lives to anyone who will listen... and beyond. Now we're plastering our vehicles with stick figures representing our favourite sports and pastimes, pets, ... and even memorializing the ones we've lost.

Have you seen this new version of the stick family?

I have started seeing a few vehicles with stickers stating "In memory of... ". I find it fascinating. To be honest, it isn't my thing. But if it helps the grieving family/friend feel like they are doing their part to keep their loved one alive, then I suppose it shouldn't matter to me. In reality, maybe it is a very simple way for the bereft to engage with their grief on a daily basis. And who knows - maybe I might change my mind with the next death that hits close to home.

I just hope someone doesn't create a "I don't care about your GD deceased loved one" sticker in retort.

Ownership (part two)

I've been reflecting on my post from a few days ago about placing ownership on those who may be grieving. I'm wondering if I could come up with some tangible suggestions that may be appropriate with acquaintances, colleagues, and clients - offers that don't feel too personal or make someone uncomfortable but may be helpful for someone dealing with grief.

Some initial thoughts:

- "I'll bring you lunch (coffee) tomorrow, any allergies?" (you could even make this a weekly or intermittent gesture for a while - just be sure to let the person know you're planning on doing it, provide advance notice, or ask preferences)

- water office plants for them (leave a note indicating it has been done)

- leave anonymous notes that indicate that they are in someone's thoughts

- start a memorial fund/fundraising campaign (take care of all logistics, but ask permissions)


Many of my initial thoughts also just started with "be understanding/patient/kind".
Do you have any additional suggestions to add? Feel free to comment with yours!

Family Drama

My uncle Ken has CP and developmental delays. When my grandparents died, he was placed in a long-term care facility and his finances are looked after by another uncle. In the past few months, Ken has mentioned to my dad that he doesn't have access to his own funds, and that he'd like to be able to do additional things (excursions, etc). Unfortunately this has caused some major family drama, and my dad is being haunted by trying to do what is right for his one brother, while trying to trust his other brother, all while feeling like his parents would have wanted things done a bit differently for Ken. Drama.

As society gets older, this is not a unique experience - in fact, in my inbox today this article jumped out at me: www.mcmasteroptimalaging.org/blog/detail/blog/2019/06/18/planning-for-the-future-the-concerns-among-older-parents-of-adult-children-with-intellectual-disabilities

An extra element for all professionals to be aware of as we speak with our stakeholders - you never know the intricacies of what may be keeping them awake at night. Planning for death may also come with the double-edged sword of also planning for long-term care for dependents. The stress of the unknowns could be overwhelming... is it any wonder we may not want to engage in these conversations?

Uncomfortable though it may be, it may be better to do that SWOT analysis now and save loved ones the drama.

DIY

Another burial option for the crafty DIYers: 

https://www.metro.news/spendthrift-builds-her-own-coffin-which-shell-use-for-bookshelves-until-she-dies/1598331/

My husband often speaks about creating his own coffin (or is our case, a casing to be cremated in) - excellent to see this story... A word to those who feel inclined however, I have just recently learned that there are very strict specifications about DIY burial options, so best to check with the laws governing internment in your area and understand that your family may still have to deal with red tape if laws change. 

See Sharon Hartung's book, Your Digital Undertaker, for more info! 

Ownership

I saw something on twitter the other day which made me laugh... but in all reality it's actually kind of sad. In our society, in the absence of something to say or do, we often fall back on words like "let me know if you need anything". This statement seems caring and helpful... but in reality puts the ownership back on the person we're trying to assist. It's simply not helpful.

Megan Devine (@refugeingrief) suggests offering tangible help - options like "can I bring you dinner next Tuesday night", or "I'll be coming by at 4pm to walk your dog for you", or "I'll pick up your kids from daycare today".

In Canadian society, we may think these statements are too presumptuous... but really, they offer kind & tangible ways in which you can actually come through for someone.

If you put the ownership on the bereaved, you may never hear from him/her, but that doesn't mean they don't need you. Also, you don't know what you may get back - see here for a twitter snapshot & cautionary tale:

The New York Times

In all the content I peruse for articles on death education, or death positive reading, the New York Times has to have some of the best content. Within the past week I believe I have tweeted or blogged about three articles now. It's a great record, and the content is much appreciated... but being the devil's advocate that I am, I'm left wondering, will there be a point where they'll reach saturation? Or a breaking point where suddenly the NYT is 'over' death content?

I also wonder about the spaces where there could certainly be more death ed - have you ever read a business professionals-focused death article in the Harvard Business Review? That will be a progressive day.

"Death is a Growth Industry"

Another new and exciting burial option: https://www.nytimes.com/2019/06/12/style/forest-burial-death.html

Very cool that start-ups are getting into this space. The basic idea behind this one is 'buying' a tree in an established forest (in Bay area - for a start up, this is a no brainer!) and then once cremated your remains will be mixed with soil and water and feed the tree. There are options, like any good business, with community trees (ie- your remains being missed with those of others), going for a smaller price tag. The article also digs into how this start-up is working through the permits and red tape of the death care industry... which leads me to my next random thought: also from this article, I love the term 'eternity management'. Brilliant.

Guarantees

No matter how much we bring forward the topic of death, speak about in our social circles, study it, or plan for it, we are never going to be guaranteed that we will have a 'good' death. This is the topic of the following Huff Post article:

https://www.huffingtonpost.co.uk/entry/death-dying_uk_5cfa5023e4b06af8b5070e9d?guccounter=1

What defines a good death will differ for each of us. It is great to think through the ideal situations, but what will you do if you face a drastically different scenario? Is there something you can do now to help change your mindset?

And in your professional role, have you ever come up against a conversation about the intricacies of dying itself? A client who is mourning who has mentioned the details about their loved one's positive or negative experience? A stakeholder who hasn't bothered to sugar-coat their grief? How did it make you feel and how did you react?

No answers here, no guarantees on how to approach in the future... as the article states, we just can't let dying get lost in the discussion of death.

Checking off the box

I'm currently reading Sharon Hartung's book Your Digital Undertaker (full review coming soon!). In the book, Sharon talks about engagement in personal planning, imploring us to really think things through.

How many of us have experienced the death of a loved one and have had to deal with incomplete plans? When my father-in-law died in 2013 he hadn't made plans... it was an intense time of guesswork and family negotiation. I wouldn't wish this on anyone. 

Sharon speaks about the difference between making estate plans as a way of 'checking things off the list' as opposed to actually thinking matters through, having the tough conversations, and really digging deep. Taking an active role, as opposed to being a passenger who relies on a lawyer to do the driving.

I'll admit it. My husband and I have definitely checked it off our list. Maybe it is time to revisit this and ensure we actually have the steering wheel...

Greek mythology

I know Wiki isn't the most reliable source, but I found this page really fascinating, if not a little obvious: https://en.wikipedia.org/wiki/Thanatos

Thanatology is the study of death and dying. Thanatos is the personification of death.

Thanatos is the son of Night and Darkness and the twin of Sleep. Is it any wonder that we have so much of this imagery prevalent in our current death culture?

Even better, Thanatos has other siblings, including Old Age, Suffering, Doom, Deception, Blame, and Strife.

Our associations with death are deeply rooted.

And maybe this explains our habitual reaction to old age as well... when associated with suffering, doom, strife and death, why wouldn't we try to avoid at all costs?

In today's aging society, being positive about growing old with grace and dying well are new but important concepts. Given how deeply anchored the negative connotations are, we have some work to do.

Beard Guy

Last year, "Beard Guy" Mike Taylor, a band member from Walk off the Earth, died suddenly. It took a lot of people by surprise - he was a much beloved member of a fantastic group (an aside: I loved their most recent rendition of Oh Canada prior to Game 4 of the NBA Finals!). 

The group has recently released a new song, dedicated to their deceased band mate. I definitely recommend giving it a listen/watch: https://www.youtube.com/watch?v=4DFgtsWnRQM

The band describes the process of writing this song as a type of therapy, a cathartic process. It's a beautiful song and you can imagine how difficult the writing process would have been for the group.

Listening to it made me tear up. 

Walk off the Earth has also been very public with their grief. A few weeks after Mike's death, the group did a free public concert in their hometown of Burlington, ON as a tribute. I attended with my daughter and they were certainly very raw and candid with sharing where they were at. Their openness to sharing their grief was powerful. And because they were public figures, and on a stage, it was acceptable to everyone. The crowds expected and embraced the grief. 

When grief is silent, society has a tougher time...it catches us off guard and we just don't know how to react. 

On the subject of writing, Megan Devine (@refugeingrief on twitter) hosts a Writing Your Grief course. If it may be helpful for anyone reading this post - you can check it out here: https://www.refugeingrief.com/30daywriting/

The Lancaster

Yesterday marked 75 years since D-Day. To mark this occasion the Lancaster did a fly by in Hamilton. I really wanted to upload a video that my hubby took, but the darn thing won't load. You'll have to take my word for it - "the Lanc" a beautiful part of history. 

The fly by made me think about how much death was a part of everyday life in the years when the Lanc flew. Obviously, this was not a good thing; I can't imagine how terrifying living during those years would have been. Death was a reality people dealt with every day. I wonder how WWII society was with grief? I wonder if they used platitudes when speaking with someone who was recently widowed, or someone whose son had just been reported missing in action... 

When death is everywhere, are people better at knowing what to say? 

Casual conversation and then... INSERT FOOT

Given the fact that I spend a great deal of time interacting and studying the topic of death, AND that I make a living out of building authentic relationships, I hope to be amazing at impromptu conversations that touch upon the topic.

But today I was not great. And I am wincing about it.

This morning outside my daughter's school, I was having a casual conversation and another mom opened up about a death in her family, in a manner that was relevant to our discussion.

Looking back, I am judging my response. Did I say the wrong thing? I know I said something that could have caused additional grief/pain. I spoke about her strength...

<insert facepalm emoji>

I know from my readings on the topic of grief that this is often a no-go word - using a word like strength can indicate that we admire a person - who had no choice; or could cause additional pain if they don't feel particularly strong that day.

I also made some additional comments that I could have worded differently, or I could have explained why I knew previously about this woman's loss. I absolutely could have created a more empathic space for her.

The fact of the matter is that I felt privileged that she opened up, and I am not sure that I did that justice.

These interactions can sneak up on us. In any and every aspect of our daily lives.
Because of this, I don't think that we can over-practice our choice of words enough... in order to truly make the world more welcoming/more safe for our peers, clients, friends, and acquaintances who are grieving, we must continue to dig deep and try to get better.

We owe it to others, and we owe it to our future selves who will be at the receiving end.

The little things

Yesterday at work I had one of those days that reminds me that I love what I do.

I'm a fundraiser and in 2013 I had worked with a gentleman who wanted to include McMaster in his Estate plans; I provided him wording for what he had hoped to accomplish after death, and ensured the intent would work for the University.

Yesterday, I met this gentleman's daughter and son-in-law. And I was able to share stories about my interactions with the donor and his impact on me. The stories were about little things - funny stories he told, the hat he wore, the wooden cookie platter he had gifted to McMaster long ago. I didn't have any profound stories, but the little things were appreciated.

I loved reminiscing with his family. I loved telling them about our small interactions. And I loved remembering him and telling his family how his legacy will live on.

It's the little things.

Medical Failure

In the McMaster Textbook of Internal Medicine, the Chapter "Last Days and Hours" defines death:

"Death is defined as the irreversible loss of bodily functions that support a living organism. In the

majority of cases (when respiratory and circulatory functions are not artificially supported), the

traditional criteria of death apply.

The Traditional criteria are further explored: 

1) Cessation of circulatory function

2) Cessation of spontaneous respiratory function

3) Dilated pupils unresponsive to light

The Chapter defines death in very scientific ways- it is after all, intended as a textbook for physicians. But what it doesn't explore is the notion that death is - in most regards - failure of medicine. 

But medicine was never intended to provide the elixir of everlasting life. So why do we now treat the profession in this light? 

Four years

Four years ago today I gained a new lease on life.

From 2012-2016 I was diagnosed and experienced the massive health roller coaster of Ulcerative Colitis. Four years ago today I had my last of three abdominal surgeries. The first of these surgeries in December 2014 resulted in my toxic and severely diseased colon being removed. It was necessary and life-saving. The second surgery, in February 2016 created my internal 'j-pouch' from some of my small intestines, and my third surgery on June 3, 2016 re-connected everything internally, bringing about some normalcy.

I've mentioned this in a previous post, but the thing that you realize when you go through so much is that it doesn't quite hit you in the moment. For me, at least, that was the way. But on these anniversaries, when I look back at pictures of myself and I reflect on my journey... it is these days that I let it sink in.

I danced with a very serious illness; danced with death. And for those four years it was a very tumultuous dance and I was rarely leading.

Since my last surgery, I've continued the dance, but am proud to say that I am always in the lead now. It may not always be the case, but my partner is not currently stepping on my toes. And that's the way I hope to carry on for many more years.

Gardening

I spent today outside, turning garden beds and FINALLY planting our veggies for this summer. And I definitely do not have a green thumb for indoor plants, so I have to say it always feels so satisfying to pick and eat food that I have grown and nurtured in my own backyard. There is just something about that action that says "life" and "success" to me.

And at the same time, I get an odd kind of cathartic pleasure out of successfully killing weeds.

I don't think that anyone would ever say this pride in growing vegetables, and pleasure in killing dandelions is morbid or inappropriate, but if you stop to think about it killing a weed is indeed ending the life of a living thing...

My daughter is nearly eight years old and she would still tell you that dandelions are beautiful.

Beauty is in the eye of the beholder, and I suppose what defines "life" is as well. Judging by the news cycle, I don't foresee these judgement calls to get any easier. Only more contentious.