Lupus Is A Bully

“My spirit is broken.”

This is what I told my specialist the other day.

Some might say that’s dramatic, especially since I appear to have such an awesome life.

It’s true. I have a great life. I get to spend the majority of my time not working, playing outside instead. I paddle, hike, ski. I go on multi-week and multi-month backcountry trips. I have more time than most to saunter about in wild places.

And I have John in my life.

But having a lovely life doesn’t negate the struggles I face daily in coping with an autoimmune illness. I can have a good life and still struggle with depression. That doesn’t make me ungrateful though plenty have said that is the case.

I am well aware that when it comes to autoimmune illnesses I have it pretty good. It could be a lot worse. But losing the ability to do what I love most, to lose abilities I once held dear is jarring. It requires a whole rethink of how I see myself. It means finding joy in new things. It means mourning the loss of what was my identity.

If a person talks about struggles they risk being labeled a downer. A complainer. Ungrateful.

But it is just that fear of speaking of struggles that isolates us. And isolation leads to loneliness and the path beyond becomes darker. It leads into a realm that is even more forbidden a topic to discuss.

Instead of telling people to buck up, pull up your big girl panties, how about just listening. I post stories about lupus not for sympathy but because adventuring in the backcountry with an autoimmune illness means what was once easy will no longer be. It is isn’t possible to move through life without lupus influencing my day to day life so how can I possibly never speak of how she bullies?

Choices

So many people say things like, “I wish I was rich like you so I could take a summer off from work.” Or, “You’re so lucky to be able to go traveling.”
Neither of these statements are true.
Too many people fail to realize that John and I are not rich, we’re not lucky. We just make different choices than most. We do not own anything more than a few bins of gear and boxes of books. We live in a cabin without running water. I am nearly forty and have not yet bought a piece of furniture. I paid less for my station wagon than friends have paid for their mountain bikes. I do not need to attach my identity to a career or possessions.
For John and I, we deem time more precious than material things.
We choose to spend time outside instead of working towards owning things. This is how we afford to play outside. It’s about choices. It’s as simple as that so please stop assuming we’re privileged because neither of us have had the pleasure of knowing what that would be like. We work for our time, by working jobs and in the choices we make. I choose time to hike in the mountains than going to work so I can afford a luxury vehicle or buy a house that looks just like every one else’s beige home.

Napping

Long distance, remote adventures are tough. They are made immensely more challenging when living with an autoimmune illness.

People express their bafflement that I can tackle a multi-month paddling trip and still claim to struggle with lupus but there are many ways I have learned over the years to cope with my illness.

One of the most effective strategies is my ability to nap wherever I happen to be if I feel inclined. And outdoor adventures allow me to partake in one whenever I want and for as long as I want (something that work places tend to frown upon).

Since lupus sauntered into my life napping has become one of my favourite pastimes.

Time Unused

Sailing the Gulf Islands and Desolation Sound six years ago was the first time I experienced lupus symptoms. Since then I have learned how to adjust my life to accommodate her.

“When the body is rendered useless, the mind still runs like a bloodhound along well-worn trails of neutrons, tracking the echoing questions: the confused family of whys, whats, and whens and their impossibly distant kin how…It was all I could do to get through each moment, and each moment felt like an endless hour, yet days slipped silently past. Time unused and only endured still vanishes as if time itself is starving, and each day is swallowed whole, leaving no crumbs, no memory, no trace at all.”

This is from the beautiful book, The Sound Of A Wild Snail Eating by Elizabeth Tova Bailey. It has me remembering those days on the sailboat when I too observed a snail go about its day in the woods.

adventuring and playing is so vital to my life. living with lupus makes me appreciate the health I still hold, health I took for granted before. Never should we take for granted health and youth. They are so fleeting.

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Books! Books! And More Books!

For our next road trip – winter 2019-2020 – we have been debating whether we should travel with our 4-Runner or to change things and get a motorcycle (or two). I prefer the 4-Runner though I do have my motorcycle license. For me, it is more than the comfort and warmth of a 4-runner. It is the space, mainly the space available for all the books I inevitably hoard. A motorcycle does not accommodate book hoarding.

Sure I could just get an e-Reader but I am quite the Luddite and do not enjoy staring at screens. I enjoy feel and scent of a book. Stories and words feel more tangible and alive in paper form.

Though we have been back home for two weeks from our four-month road trip I am just getting around to emptying the last of the stuff from our 4-Runner. It’s been -30C and colder since we got home and the books stashed in the nooks and hollows of the 4-Runner are not at risk of freezing (can’t say the same for an e-Reader) so they’ve sat there until this afternoon.

It is amazing how many books I can tuck away in the 4-Runner. It helps that my partner, also an avid book reader, was willing to rip out the heater that is for the back seats. The heater, which sits under the passenger seat, is bulky and heavy and completely unnecessary since there are no back seats and therefore no passengers. Instead of driving an unused heater around, more than a dozen books are now stashed here.

The photo above is one of three piles that I hauled out of the 4-Runner today, books that we didn’t get around to reading, books we would like to re-read or books we couldn’t bear to give away just yet.

In Praise Of The Thrift Store Fleece

Two summers ago I paddled across the Barrens of the Northwest Territories and Nunavut for two months. My favourite piece of gear ended up being a tattered old ugly green fleece I bought in a thrift store years before. It kept me warm and endured so many abuses.

I wrote a piece, I want to say ode, for She Explores about that fleece. My fleece recently died as Tenacious Tape and Jiffy Sew patches could no longer keep up with the material wearing away to nothing anymore. But she had a long, adventurous life. I’ve missed her warmth this winter.

Check out the story here.

Weather And Moods

I hate to admit the weather affects my mood.

I can endure the rain and cold for some time but these past few weeks of traveling the Oregon Coast have been particularly cold and wet. While I have enjoyed trail runs and beach strolls the cold rains have knocked my enthusiasm from traveling a little.

The hiking has been less frequent but we have thoroughly enjoyed hopping from one tiny coastal town to another, going from coffee shop to junkyard to another coffee shop, then the thrift store, junkyard, bakery, coffee shop, gear store, coffee shop… you get the idea. I love any place that advertises, “Espresso, gear and beer.” If it was sunny outside I’d feel guilty being so idle but with all this rain I can enjoy my fourth cup of coffee and read another hundred pages before noon, then stroll around the corner to another eclectic café and feel not an ounce of guilt.

Along with the winter storms a lupus flare is threatening to kick up again. Learning to “take it easy” has been a difficult to accept as necessary. I feel like a restricted husky unable to run free. The rain knocking down my enthusiasm for trail runs and hiking helps keep me from overdoing it, reminds me to just chill, take things easy, to relax. Which is what a lupus flare requires.

We’ve looked at the weather forecasts and sunny skies are in our future. Hopefully my mild flare will subside and I can enjoy a few more some beach runs and forest scrambles before the long drive home back to the Yukon.

A Simple Happiness

What a happiness to find myself on the Pacific Coast, among old-growth redwoods. After two months of hiking and camping in the desert the lushness of the north coast rainforest is intoxicating. The shades of green are jarring. Whales and seals and sea lions swim offshore. Elk and cougar roam the forest. Spotted owls and varied thrush hide in the depths of the woods.

What happiness it is to be here.

This wandering life is not always comfortable or easy. There are long days of cold or wet or both. It is tough, not always quite as idyllic and romantic as it might appear, especially on social media. Added to that uncertainty is the self-doubt and insecurity I am internally plagued with. Joint pain from lupus pulses in my knuckles on these cold, damp mornings.

But there are moments such as this when all worry and concern dissipate and I am left with this simple emotion of blissful happiness. What a winter solstice day we enjoyed yesterday wandering in a rare wilderness.

 

The Randomness Of Travel

After leaving the Grand Canyon we took random roads to Mojave National Preserve. We do not travel with good road maps so we often travel by suggestions from locals. We have not yet been led astray. We enjoyed a couple of days in Flagstaff, Arizona, which has great coffee shops and an eclectic used bookstore to get lost in for an afternoon. Driving historic Route 66 brought us a few surprises, most adorably the wild burros and the cutsy but touristy town of Oatman.

The randomness of travel is addictive.

We definitely like to keep our plans to a minimum and let curiosity pull us.

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