Over the weekend, I was honoured to help facilitate the second annual Deathly Matters conference: two days of powerful speakers exploring diverse topics aimed at doing death better. The amazing speakers shared insights on palliative care in the homeless population; the ecological footprint of death; pet loss; indigenous perspectives on death, dying and grief; medical assistance in dying; home funerals; the intersection of trauma informed deathcare and cultural humility; planning for living while dying; and so much more.

It was a rich weekend of deep learning, inspiration and community building. Such a balm in this wildly chaotic year.  

As I reflect on the weekend, and its purpose -- doing death better -- I’m focusing on doing grief better, too. Grief is a natural and expected response when someone dies, AND I want to focus on the grief we often don’t experience, or at least not fully, openly or freely, for things other than death.

It’s a topic that’s been popping up for the past few months (thanks to COVID), and especially this time of year when many traditions around the world celebrate and mark the passing of ancestors.

We’ve collectively had a challenging year, with lots of losses in many forms. Directly related to the virus, we’ve witnessed loved ones who’ve died, and family members who weren’t able to be present in their final days, hours and moments; who haven’t been able to gather to carry out rituals of mourning, like funerals; whose lives have been cut short because of the resulting isolation; whose jobs have disappeared; whose social circles have shrunken; whose ability to move about in the world has drastically changed. It’s sad and it’s tragic and we are right to grieve. 

Before we get too far, I want to provide a few definitions. 

So, what is grief? 

Grief is “a strong, sometimes overwhelming emotion for people” and is “the natural reaction to loss. Grief is both a universal and a personal experience.” (from Mayo Clinic) Another definition, from the Grief Recovery Method, is: “Grief is the conflicting feelings caused by the end of or change in a familiar pattern of behaviour.” One of my favourite definitions of grief is from a 2014 blog post by Jamie Anderson:

“Grief, I’ve learned, is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go.”

That love can be connected to a person, a relationship, a dream. 

A few other definitions: 

Pioneered by Pauline Boss, PhD, ambiguous grief exists with any loss that’s unclear and lacks resolution. (For more details: https://www.ambiguousloss.com/about/faq/) A lot of what we’ve been experiencing throughout 2020 might be categorized as this flavour of loss and resulting grief. 

Many folks, especially those awaiting a loved one’s or their own imminent death, experience anticipatory grief: grieving before the loss occurs, because we know what’s coming and we know it’s going to hurt. 

And a final option on the grief menu is disenfranchised grief, which was coined by Kenneth Doka, PhD. This is grief that isn’t or can’t “be openly acknowledged, socially sanctioned or publicly mourned.” These are the losses and griefs that we don’t speak about, because it doesn’t feel safe or valid, for a number of reasons. For an insightful list of perspectives of disenfranchised grief, visit https://whatsyourgrief.com/64-examples-of-disenfranchised-grief/. 

This last one seems especially applicable to living with a long-term illness, and really got me thinking. 

Wow, this sounds like a big juicy bowl of grief-y fun times, Jilly, I can hear you say. Stay with me.

So, why am I wading into the grief pool anyway? 

A while ago, my coach encouraged me to create some time-bound space to be in grief about living with long-term illness. Over nearly 40 years, I’ve mostly just sucked it up. I try not to complain or think about what ifs. How does that help anything? I’ve always thought. 

And yet. 

While talking with my coach, I was surprised at the velocity and veracity of emotion that rose in me when I thought about all I have carried over the decades because of this condition. 

All that is unseen by others but hovering over and around me all the time. 

All that fills my backpack that I can never set down. 

It showed up in my clenched throat and the tears that spilled from my eyes. My coach astutely pointed out that I was keeping part of myself locked away by not being with it and all it brings up for me, and challenged me to acknowledge it. 

Whoah. For someone whose top value is BE REAL, that struck a chord. I was out of alignment by denying myself the impact of this condition, by keeping it hidden from view and by putting on a brave, suck-it-up face. 

So, it took me a while to carve out the time (um, hello resistance my old friend) but I finally did and the following lists are what emerged. 

Side note: Turns out I grieve through list-making. What’s that saying? How we do one thing in life is how we do all things…..Wellllll, look at that. 

Anyway, some of what appears in these lists are things I’ve never held in concrete thoughts before now (I usually pushed them away), let alone articulated to myself, and certainly not to anyone else. There are things here even I didn’t know I was carrying around. 

Deep breath as I prepare for a vulnerability hangover...

I wish I didn’t have to…

• Watch what I eat and calculate carbs for every food and drink I want to consume

• Check my blood sugar

• Take insulin

• Take thyroid medication

• Take statins to manage my cholesterol to prevent heart attacks

• Worry about the impact of diabetes on my eyes, kidneys and peripheral nerves

• Spend (lots of) money on drugs and supplies

• Carry around testing equipment and pump supplies, including insulin that needs to be climate controlled, so it can’t be left in a car, or the sun, or outside

• Carry around food...just in case

• Plan EVERYTHING

• Deal with high blood sugar

• Deal with low blood sugar

• Get regular bloodwork done

• Explain that and why I feel awful

• Feel awful: glassy-eyed, foggy-brained, headachy, irritated, shaky, sweating, upset tummy, lethargic, muscle spasms, blurred vision, unable to stay awake, unable to stay asleep...

• Be responsible ALL THE TIME

• Worry about how and where to dispose of sharps and all the plastic that my supplies are made of or packaged in

I wish I could…

• Eat whatever I want whenever I want

• Do whatever I want whenever I want without planning

• Be spontaneous

• Be irresponsible

• Be disorganized

• Still have fingerprints on my testing fingers

• Easily get rid of excess weight due to insulin use 

• Drive without worrying about blood sugar

• Travel without being swabbed and explaining my kit and supplies to border agents

• Travel without my kit and medical supplies taking up so much space in my bags

• Exercise without passing out

• Spend money on things I want, not things I need

• Swim or be in a pool, lake or hot tub without fear of losing or damaging my $7000 insulin pump...or someone walking away with it

• Be in the sun without worrying about how hot my insulin is getting

• Not think about it all the time 

I’m angry that…

• I have to spend so much money on treatment

• I don’t qualify for some insurance because of diabetes

• Health insurance doesn’t cover very much of my treatment or supplies and I have to renew my coverage each year with a doctor’s note (because maybe I cured it in the past year??)

• Insurance coverage for insulin pumps and continuous glucose monitors is based on your existing “performance” and having achieved a particular level of (good) control, rather than being seen as vital tools to result in better management

• People feel entitled to comment on my food or treatment choices

• I’m limited in my choices -- lifestyle, career, daily activities

• I always have to consider the impact and repercussions of a choice

• I can’t ever NOT think about it

• I’ve got scar tissue all over my body from 40 years of injects and pump insertions

• A lot of other people have it easier and take so much for granted...and complain about their lives!

• I simply can’t do certain things safely

• My mood is impacted by my blood sugar

• I had to grow up fast and be responsible as a kid -- I feel like I missed out on a lot of childhood fun

• Even when I plan and do all the “right” things, things don’t work out -- I can’t participate in regular fitness activities, or training programs or even a meeting or walk or running an errand or going to sleep because my blood sugar makes it unsafe

I regret…

• Not paying attention to weight gain and preventing it

• Not believing I was capable of having a healthy pregnancy, and waiting so long to get pregnant the first time, and having a miscarriage during my final attempt at having a second child, and then that window was closed

• The impact my diagnosis had on my original family -- stress, expenses, doctors appointments, time and energy focused on me and not my three siblings

• Beating myself up for “bad” blood sugar readings and spiralling into depression at various points in my life

• Trying to figure it all out myself

• Believing what I was told when I was a kid by doctors and well-meaning family members and letting those beliefs inform my choices

• Not knowing more than I did in the past

I worry…

• That I’ll lose my independence and ability to manage my condition myself

• I’ll be a burden to my spouse and child as I age

• I won’t have quality healthcare as I age

• I will be stuck in a care home with inadequate caregiving and my condition won’t be managed well and I’ll experience horrible complications and poor quality of life

• I won’t be able to afford my drugs and supplies as a self-employed person, and as I age

• I will need to get a soul-crushing job just to have adequate healthcare benefits to pay for my treatment

• I will miss something in my treatment and a complication will arise

• That my child will inherit it and have to live with it too, or their offspring will (if they have any)

Deep breath again.

Cheerful stuff, right?!! You’re welcome for brightening your day! Blurgh…

So what’s the point of acknowledging these heavy emotions? 

The Lessons

Well, what I learned from this exercise is that grief is commingled with lots of other emotions, ranging from anger to love to empathy to fear, and untangling them is messy and takes time. And that’s okay. That’s where the learning is. 

I learned that acknowledging the losses -- real, physical, anticipatory, psychological, ambiguous, or otherwise -- is healing. Holding them out, with the benefit of distance and simply observing them allows us to see them for what they are: Experiences. Data. Information. What we do with that is up to us. 

I learned that grief is about acknowledging what is, allowing what it brings up, and finding acceptance in its existence. When we stop pushing against what is, we can find peace through acceptance, and life can flow more easily.

Grieving is an act of courage. It takes real commitment to ourselves and others to be willing to look into the darkness, the discomfort, the hard stuff and seek our way through.

I learned that the thing we might be grieving is not the only thing that defines us. Several years ago, working with a different and equally brilliant coach, I made the profound distinction in how I describe myself. I used to say, “I am diabetic.” Now I say, “I have diabetes.” It’s a subtle shift in how I saw myself and this condition. It is not all of me, and I am more than it. 

I learned that being witnessed in my grief is validating and empowering. For me to show up as my fully expressed self, I can’t hide away this part of me, and the impact it has on how I move through life. To avoid it, or resist it, actually gives it power over me. By integrating it, claiming it as a beautiful part of what makes me, me, I gain power over it.

 

Your Challenge

What part of your life -- a chronic condition, a scary diagnosis, a loss experienced because of COVID or something else -- might you choose to grieve so you can claim it and integrate it? (Hint: Look for the pain: What’s the love or longing beneath it?)

What might your responses be to these prompts: 

• I wish I didn’t have to…

• I wish I could…

• I’m angry that…

• I miss…

• I regret…

• I worry...

I’d love to witness you in your grief. Feel free to share what you discover, and the lessons grief has taught you. 

And, if you want help processing it, and building mental fitness techniques to ease the emotional burden of a chronic illness (including the grief that comes with it), check out my upcoming program, Positively Chronic. If you know someone who’d benefit from participating, please share it with them. 

And, as previously promised, in my next post I’ll share the gifts I’ve gained because of my chronic condition. It will be way more uplifting. For sure. 

Thanks for hanging in there and witnessing my grief, friends.