Advent

It was as I sat watching the first Advent candle being lit in church, that I decided I wanted my own advent wreath. It’s not something I’ve ever really been into, and it’s not something we had in our family growing up. But suddenly, I wanted one.

Here’s the thing, though. With my ME/CFS diagnosis, my nervous system is hyper-sensitive, and prone to inflammation from things that other people’s bodies don’t even pay attention to.

Chemical sensitivities are almost always an issue for people with ME/CFS, and I noticed this in myself over the last few years. I am keenly aware of odours, and I can get overwhelmed by fragrances quickly, even if they’re natural, like essential oils.

Suffice it to say, my home has become a scent-free and paraffin-free household. I always purchase a couple beeswax candles wherever I find them, but it turns out the purple and pink of Advent are hard to come by—well, after Advent has already started, anyway.

So, while I knew I wanted an advent wreath with candles, I also knew that, like everything else, I was going to have to improvise and make my own.

The wreath was the easiest part. Then, I managed to find some plain votive holders at Michael’s — you’d think these would be ubiquitous this time of year, but no. And lastly, the candles. The DIY kit arrived from Amazon just a few days ago.

We are on the fourth Sunday of advent, and here I am, lighting my wreath for the first time.

But for now: hope, love, joy, and peace—I will take them all. And because it is also the first night of Chanukah, I used the shamesh to light the advent candles—because Chanukah reminds us of miracles, and I’ll take a few of those too 😉

Aware of the Invisible

I recently learned that this week is Invisible Disability Awareness Week.

I have mixed feelings about awareness weeks. Awareness is great, but sometimes I feel like it doesn't move the needle just by being aware that certain disabilities, illnesses, or stigmas exist in the world. And yet, as was stated more than once in a course I took on implicit bias: "aware is halfway there." So maybe there's something to it.

Coincidentally, this awareness week is the same week I am taking a photography course in Oregon. Last year, I took the instructor's course in Nevada. It was great! And, I was exhausted most of the time. In hindsight, I can see that I was crashing. Too much stimulation, too much exertion, too much excitement (and too much jumping).

I had confirmed my trip for this year shortly before I was diagnosed. Once I started to understand how my body was using energy, I searched the internet for travel tips. It was interesting to see some of the things I'd already started doing in recent weekend trips to support my own well-being. Clearly, I listen to my body more than I give myself credit for.

I've put some additional strategies in place for this trip--gleaned from others who've gone before me--in the hopes of mitigating the post-exertional malaise. Some of these strategies are as invisible as the disability itself; others will make it more obvious that I don't go about some tasks like others do.

I'm not so sure it's awareness I'll need as much as empathy.

One cool thing I discovered in an ME/CFS support group is the Hidden Disability Sunflower Program. Increasingly, businesses around the world--and airports in particular--are recognizing the sunflower as the symbol of invisible disability or illness. A visual prompt for awareness and empathy, as it were.

All four airports I will be travelling through are part of this program.

[Insert sigh of relief here.]

I have a lanyard that I'll be wearing, as well as sunflower stickers on some of my belongings, that I'm hoping will--as their website says--"make the invisible visible."

We'll see how it goes. 🌻

Plan, Prep, Pace

I hiked among the larch trees last fall. According to the reviews on AllTrails.com, it was considered moderate, yet kid-friendly. "If a six-year-old can do it, surely I can do it," I thought.

At that point in my health journey, I knew that physical activity exhausted me, though I didn't know why. It was a hike that I tried to take slowly and gently; yet, it still left me exhausted for a full week afterwards.

One year later, with a diagnosis in hand, I hold the gift of hindsight.

For those with ME/CFS, it's not only physical exertion that sucks mitochondria dry and frazzles the nervous system. Turns out that cognitive, social, and emotional exertion add to the load as well. When I thought of all the activities surrounding the actual hike, it's no wonder I crashed.*

With a strong disposition of persistence, I considered what would need to happen for a successful hike this year. Peyto Lake was a spot I had yet to see with my own three eyes (the two on my face, and the one on my camera), and I wanted the autumn colours against the aquamarine water.

And I did not want to crash.**

• So, instead of a day-trip, it became an overnight trip.

• I worked from home the day before.

• I did not take any Airbnb bookings upstairs in the days leading up to my trip, so that I could be more blasé about cleaning and tidying.

• I did only necessary chores.

• My friend and I agreed I would not do any of the driving.

• And, though I didn't ask, she carried my backpack of snacks, water, and camera gear the whole way.

• We took a slow pace with lots of breaks.

• I monitored my heart rate the whole way; I kept my breathing measured and steady.

• And upon returning home, I didn't rush to put everything away. (My car is still half full of gear.)

All this, on top of the regular, daily things I do to keep my system stable.

...Now, the deceptive part about crashes is that they can be delayed by 12-72 hours after the activity or event. I had 3 crashes during the summer, and two of them I wasn't expecting. It's delightful. (#sarcasm). And so, as I went to bed on Sunday night, I wondered, "did it work?" 

...It worked.

As I type this at the 72-hour mark, a smile creeps up my face. My first pacing success.

Next to actually getting my diagnosis earlier this spring, this feels like the biggest of wins. 

* A "crash" is the term in the ME/CFS community to describe overdoing it. The clinical term is post-exertional-malaise (PEM), which means a worsening of ME/CFS symptoms after any sort of exertion. For me, a crash looks like a dysfunctional 24-48 hours on the couch, with brain fog that would make London jealous.

** Not just because a crash feels extra awful, but also because crashes can contribute to overall decline in the long run. 

The Outcome of Persisting Exhaustion and Exhaustive Persistence

I was in a discussion once on social media about navigating the medical system. Someone commented, "It's a full-time extra job being undiagnosed." Tell me about it; I just got out of that maze.

It started with food intolerances; as I'd had a "sensitive" gut since childhood, everything seemed to point to a gut issue... until about two years in, when I started to connect feelings of extreme lethargy and brain fog to physical activity and/or stress (both positive and negative).

Maybe it's not just a gut issue...

I had already started poking at the medical system because of the newly-developed food intolerances, and so I continued to hop around from specialist to specialist--while also regularly visiting a variety of medical professionals to help manage the symptoms-of-unknown-origin. Somewhere along the way, I realized I didn't even care about getting better--I just wanted to know what was wrong.

The anxiety is high when every bite of food feels risky.

The apathy weighs heavy while you wait for the brain fog to clear.

You can start to feel crazy making so many lifestyle changes without a clear idea as to why.

(Thank God for my therapist.)

I was given a diagnosis of IBS in 2020; by then I already knew that it wasn't the only thing going on. In one of my down-the-rabbit-hole, anything-new-I-can-learn-today searches, I came across a list of symptoms on the CDC website that I hadn't seen before. My eyes grew large as I read a list of criteria for which I checked nearly every box. I asked my GP if it was worth looking into, and she referred me on to someone who might be able to answer that question.

Four years, and six specialists later, I have a diagnosis. An internal specialist confirmed that my symptoms and experience tell the story of Myalgic Encephalomyelitis--or, as it's more commonly known, Chronic Fatigue Syndrome. (I will refer to it by its abbreviation, ME/CFS.)

A surprisingly common, yet poorly diagnosed disorder.

They tell you not to Google your own diagnoses, but at this point in my journey--two gastroenterologists, an internal specialist, rheumatologist, allergist, general surgeon, two dieticians, two naturopathic doctors, my GP, a chiropractor, two acupuncturists, and a massage therapist--we had eliminated and screened for a lot of different things; and, not a single medical professional had even whispered ME/CFS as a possibility. I honestly think it wasn't even in their mental catalogue of options. How long would it have taken to get this diagnosis if I hadn't regularly been checking for new information online?!

Diagnosis day was a good day.

ME/CFS is categorized by the World Health Organization as a neurological disorder. When my food intolerances first came about, I felt as if something in my body had short-circuited. Then, with the IBS diagnosis, I learned that part of the issue is mixed signals between the brain and the gut. Now, seeing ME/CFS as a neurological disorder, it really does seem that my circuits are a bit scrambled!

Will the circuits ever get fixed? Hard to tell. Like the wiring in an old house, there may be only so much that can be done. Some people get worse. Some get better. Most plateau at something less than 100% of their original health. There's no real prognosis. Right now, I just know that I'm prone to flip my breakers more often than others.

It's not life-threatening.

The internal specialist who diagnosed me said I've been doing everything right so far to manage my symptoms and take care of myself. After my appointment, I promptly joined a couple support groups (one local, one online), and I'm hoping to add more tools to my toolkit as time goes on.

I will keep poking the medical system as needed.

I don't know how much I'll share online--with some exceptions, I tend to keep most of the details of my health experiences to myself and those closest to me. However, I know that there is power in community. I know that advocating for myself is important, and sharing parts of my story may help you advocate for and empathize with others. In essence, I now live with a disability--it's a new perspective on something that's been important to me for many, many years. And, as stated before, this is a poorly diagnosed condition--because (as I'm learning) it is poorly understood and poorly researched. If I can help increase understanding, then perhaps someone in the future will not have to go through four years of emotional and physical turmoil before getting a diagnosis.

They're likely tired enough already.

* Image source: https://steller.co/s/there-are-4dxR2bfkaYN/p/1

I Can't

I can't do it. I can’t celebrate Canada Day this year. In light of recent events, I’m not sure fireworks and memes and inspirational videos are appropriate.

Rather, every Canadian flag should be at half-mast this Canada Day.

I love Canada. And I believe we are a country capable and competent of taking the necessary actions for reparation and reconciliation. I believe the Canada Days of the future will be about the celebration of our hard work to be a more inclusive and just society--because we will have come to own our origin story, rather than dismiss it or outright hide it.

But I don’t think we’re there yet.

(I mean, if you had a friend with a rumoured sketchy past, would you feel comfortable hosting their birthday party if it came to light that they had murdered a bunch of people? I don’t know about you, but that’s kind of a deal-breaker in my relationships. There’s a lot of work that would need to be done there.) 

This Canada Day, I think we need to spend the time:

• Actually honouring the land treaties we have abused for years. Do you know who the first peoples were on the land that is now your home?

• Grieve the thousands of children who were taken from their families, traumatized in residential schools, and then buried there—nameless. Schools should not have cemeteries. 

• Make a personal commitment towards reparation and reconciliation. What is one action you will take today? Here are some ideas to get you started:
• Check your own bias, stereotypes, and assumptions.
• When it is pandemically safe to do so, participate in a blanket exercise in your community.
• Read the Truth & Reconciliation Commission's (TRC's) report and calls to action, and act on it.
• Start acknowledging the treaty land at gatherings you host.
• Donate to services that support those impacted by the generational trauma of growing up indigenous (shelters, mental health agencies, addictions recovery, etc.). 
• Make purchases from local businesses owned by indigenous individuals. 
• If you are Christian, ask your church what actions it takes towards reparation and reconciliation. Consider how you can use your voice for change in your faith community.
• Hold people [lovingly, but firmly] accountable for racist, derogatory language. Here’s a primer.

Yes, I am honoured to be a Canadian. I believe I am more than my ancestors’ bigotry and bad theology, and I believe Canada is more than that too. But this year, for me, Canada Day will involve reflection rather than celebration. Humility rather than pride. I am checking my privilege. I am doing the work.

#ThisIs20

I was still in university when I found this ragamuffin kitten, sprawled-out sleeping on the sofa in the dorm's lobby. I could only surmise that someone coming back from the bar the night before had let her in out of the -20C November cold. I am still thankful to that person.

I took her to the vet, which doubled as the humane society in my small university town. They said they would advertise in the local paper for three days, but if no one claimed her by then, they would have to put her down.

I told them to call me in three days.

I named her Princess--inspired by the word on a keychain I had at the time, it seemed fitting regardless, given her paper-bag-princess appearance when I found her.

And so began our journey together.

I remember thinking, "wow, I'll be, like, in my mid-30s by the time she lives her full life." It seemed like such a long way off. I couldn't fathom being that old. (Don't even.)

And yet, here we still are.

Akira is my sweet snuggler; Holly is my flirty delight; but, Princess is my OG.

She watched me become a fully-fledged adult, and came along for the ride. Princess has moved house with me eight times. She has been with me through a marriage and divorce. Through friendships that have lasted and others that have not. And through one pandemic.

She likes to be where I am. She has been both my study buddy and work buddy. She oversees my gardening, and occasionally nestles beside me in the hammock. She still greets me at the door when I come home. She still gives kisses.

She is 20.

I look at her bowed legs and stiff gait, and I know that this year could be her last. (And then she chases Holly's toy around the living room with an energy that belies her age, and I'm convinced she's going to be the first cat to live forever.) The vet continues to tell me that she looks amazing for her age. She's on some meds for pain and mood, but as long as she continues to eat, pee, and poop, I guess we'll continue on together.

I am happy to be her human as long as her little heart beats.

I Stand with the Muslims

As I learn about yet another racist assault on Muslim women in the city I live in, I'd like to take a minute to share a story.

I’ve been an AirBnB host for over six years. In my first year hosting, I had a young woman stay for a month as she getting started as a PhD student at the UofA.

She was Muslim.

I am Christian.

Throughout her four-week stay, I showed her around. Coming from a large city in the middle of the desert, she was keen on spending time in nature. So I took her to Elk Island National Park, down into the River Valley, and--upon request--I found her a wheat field to stand in.

I took her to Ikea to get what she needed for her new apartment, and to the Old Strathcona Farmer's Market to show her where to buy local close to campus. I Googled the Halal shops close by. I accompanied her on a walk or two.

In all this, we talked about our different upbringings, our different cultural experiences, and our different faiths—I remember she openly answered my curious questions about her faith practices, and the principles that guide them. I think I did the same for her.

She reached out a few times after she’d moved. She was making friends with other international students, and they sometimes had questions as they tried to immerse themselves in various aspects of “Edmonton culture” for the first time. One particular summer evening, she texted and said she and her friends were going tent camping in Jasper for the first time that weekend. She wanted me to come; partly for company, but partly, I'm pretty sure, as the Canadian Camping Expert. I couldn’t go, but I offered up my camping gear so they wouldn’t have to buy everything new.

That was the day I stood in my garage and showed a Muslim woman and her friend how to pitch a tent.

I don’t remember most of the conversations we had. I just remember she had such a posture of humility. She was open to conversation without judgement or pretense. She had a delightful sense of humour. She was open to trying new things. She was disciplined in her studies as well as her faith.

I've thought of her, and other Muslim women I know, often this past year, as these acts of racism and hate keep happening. I don’t have any heroic point to make here other than to show that she is a person--with hopes, joys, and a life—just like every other Muslim in Edmonton and Alberta.

Let me just say that if you’re the kind of individual who is bothered by people who look, dress, or live differently than you, YOU’RE the one who can go elsewhere. I stand with the Muslim women who've been attacked this year, and all those who are at risk of discrimination and attack as they simply go about the business of living. They have every right to be here and to exist as you or I.

The 365-day Project that Took 8 Years (AND SOTC 365/365)

Have you ever gotten so intimate with a saskatoon berry? My yearly tradition of foraging a few cups of saskatoons from Edmonton's River Valley completed my SOTC photo challenge this past summer.*

I do love a good photo challenge. A few years ago, I turned a gratitude challenge into a photographic one; I spent the next summer hunting down instagrammable walls in Edmonton; and, I currently have an ongoing challenge to sit in a Red Chair in every one of Canada's national parks/historic sites before I die--with picture proof, of course.

My first photo challenge was a 365 project where I captured a photo of myself every single day for one year. As soon as that one was complete, I set myself up for a second 365 challenge--a photo each day straight off the camera (SOTC); no post-processing of any kind. However, 30 days in, I was struggling to keep up the creative juices. While the first 365 project was essentially photo documentation of my daily life, my Straight Off The Camera challenge was more about being able to work a subject or composition. But, you know what? Some days I just don't feel like taking photos. I doubt even professional photographers take photos every single day.

So I re-wrote the challenge. Still 365 un-processed images... with an open time line.

And so here we are.

That project started on September 1, 2012, and concluded July 27, 2020. The 365 project that took 2887 days.

I have to admit, I'm not sure if this challenge resulted in me creating more un-processed final images or not. As my photography has evolved, so has my "vision" for some of the images I compose--sometimes I create compositions that I fully intend to run through Photoshop before I even click the shutter.

However, my first love is capturing this big, beautiful world "as is"--there is a strong element of realism in my photography, and so I know my satisfaction with getting the shot I want fully in-camera has certainly increased, because sometimes the elements are against me! In this project, occasionally I got one on the first try. Other times, it took upwards of 20 shots to get the one I wanted. I also put concerted effort into capturing a variety of compositions to stretch my comfort zone.

My creative drive has taken a bit of a hit with the pandemic this year; as for so many people, my mind has often just been elsewhere. Nevertheless, I know that photography soothes my soul, and my camera is never far from my side. While I will be spending time this winter learning more about post-processing, there's nothing quite like getting it "right" in-camera. I know I will continue to stretch my compositional skills as much behind the lens as in front of the screen.

P.S. I am blogging less these days... the best way to keep up with my fine art photography is by following me on Instagram: @photosbygina.yeg.

* It also completed the life span of my camera, the shutter mechanism of which started failing minutes after this image was taken. Many digital cameras like mine have an average "mileage" of 100,000 shutter clicks. In seven years with that camera, I'm sure I reached or exceeded that. It is costly to repair the shutter when compared to the cost of a new camera body, so I upgraded to a similar but newer model. RIP Canon 70D.

SOTC 364/365

SOTC 363/365