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.
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.
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.