That’s 1440 minutes every day that each person has to make the myriad of choices, big and small, that we all face daily.
Ultimately though, the one choice that will really make a meaningful difference in this world, both for individuals and for humanity as a whole, as trite as it may sound, is LOVE.
If we can tap into that emotion every day, especially the dark days, and more importantly show it in our actions, the haters can’t win.
I was lucky enough to see Rent onstage in Vancouver twenty years ago, two years after its debut. Rent is a rock musical written by Jonathan Larson, who died suddenly at 36, the morning of its off-Broadway debut in 1996. Talk about no day but today. RIP Jonathan.
I listened to the soundtrack on my road trip last month because the Victoria Operatic Society is performing the musical this fall. My nine year old will be disappointed there are no suitable roles for her. ☺️
Rent is loosely based on the opera “La Bohème” by Puccini, which concerns starving artists in Paris in the 1840s, facing the tuberculosis epidemic. Rent places the struggling artists in New York City in the 1990s, facing the AIDS epidemic.
In 2018, the messages of both these great works are more important than ever as the world faces the trumpidemic that threatens to tear apart the United States. Is that melodramatic? Maybe. I hope so.
As a white, cisgender woman growing up and living in a middle class neighbourhood in Canada, I have been spared the horrific abuse I see hurled at the marginalized, though even as a young girl it hurt my heart to realize humans could treat each other so badly.
Now being a member of another marginalized group, the disabled, I have an inkling (the teeniest for sure) of the challenges so many people face in being accepted and valued in our society.
Diversity, tolerance, love, friendship, hope, despair, addiction, disease, discrimination, the class divide and the death of art – timeless themes that we human beings should have a better handle on by now.
Instead, a Muppet-like wannabe dictator (sorry Jim Henson) a misguided, heartless president is sowing the seeds of hatred, intolerance and bigotry through his ridiculous Twitterganda and isolationism.
The strongest weapon against his particular brand of nastiness, is LOVE. Seasons of love, people, that’s what we need.
No day but today.
Have you seen Rent? If not, I highly recommend! The actual musical is way better but they did a great job with the movie which includes most of the original Broadway cast. It’s on Netflix. 😊
I propose we start a new hashtag movement. It seems the haters and the trolls are the ones who spend time and energy spewing hatred online. Rather than wasting our (precious spoonie) energy by engaging in a useless attempt at intelligent debate, let’s drown them with a tsunami of #fightthetrumpidemic and #chooselove hashtags every time they comment.
In order to stem the tide of ignorance and hate, we have to overcome the apathy, stop talking amongst ourselves and start fighting back. Who’s with me?
Fight the trumpidemic. Choose LOVE!
Thanks so much for stopping by. Have a wonderful week!
Any writer is a reader first, and I’ve always been an avid reader. However, when it comes to which books I read, like most things with the monster there are two parts of my life: before relapse and after relapse. Having RRMS, I’ve obviously had many relapses. I’m talking about the life-changing, brain-frying relapse that hit me in December 2015, before I had a diagnosis. That story is here. I’ll call that relapse Ralph.
Before Ralph, I was voraciously devouring the classics and literary fiction that make up my husband’s extensive book collection. He once dared me to read Clarissa by Samuel Richardson, a wee book of 1536 pages entirely written in letter format. Epistolary is the technical word, apparently. Sounds like a virtual urinal 😜. Clarissa ended up being one of my favourite books of all time. Don Quixote by Cervantes is another that seemed daunting but I loved so much I will make myself read it again one day.
Despite having a degree in French Language and Literature, I always hated writing and avoided university courses that had an essay component as much as possible. Give me a factual test any day, don’t ask me to articulate my thoughts in writing. I was wracked with paralyzing self-doubt that I could ever adequately express the thoughts bouncing around my skull. Or that the thoughts were even worth expressing.
When I was on maternity leave with our third child in 2010, I started my Masters and one of the first courses was statistics. I hear the collective groan, but I surprised myself by really enjoying it. Writing the initial essay was the first time my thoughts stopped bouncing and ordered themselves into words, then paragraphs, then into the very first A+ in my life. More importantly, the professor complimented me on how clearly and succinctly I had reasoned my arguments. Amazing what a difference a few words, and twenty years of experience, can make in a person’s self-perception.
Fast-forward to 2015. I hadn’t yet met Ralph, but I had been relapsing every six months consistently for five years, luckily always bouncing back completely. One of my favourite memories of my career is lunchtime in the staff room with certain colleagues. You know, the ones who speak their minds and the subject matter sometimes gets a bit bawdy but is always hilarious? Many lunch hours sharing stories and loud laughter with people I still consider dear friends, even if we hardly see each other.
Anyway, I shared some (not all, I was a grade one teacher, for Pete’s sake) of the more adventurous, sordid tales of my adolescence in the 80s, as well as the story of how I met my husband, which was also in the 80s as it happens. I had several people tell me, sometimes after staring at me wondering how I’m still alive, or with hearts in their eyes as I recounted my personal love story, that it sounded like a movie or I should write a book. I thought little of it, until that summer when… wait for it… I had a dream.
Sounds stupid, I know. The first time I dreamed the title and the first line, I woke up and thought, weird, and moved on. Then I had the exact same dream the very next night. Always a believer in signs, I opened up a blank document and typed that first line. For the next six weeks, the story wrote itself, around 80,00 words, my imagination filling in the many places my memory couldn’t locate. It was an unreal, life-changing experience.
That project sat on my iPad until the following September, when the residual effects of Ralph’s visit forced me to face the fact that I could no longer teach. Reading has always been a loyal companion but I found that not only did the cog fog make reading really difficult, even holding a physical book took too much energy. Thank goodness for digital books and Bookbub!
All my brain could handle at that point were romance novels, and I had to face my own snobbery to the whole genre that had me, with the exception of a brief Danielle Steel phase when I was 18, too embarrassed to even go to that section in the library. There is a reason that romance represents such a large proportion of all books sold. People, okay mostly women, love a love story. For obvious reasons.
Spending so much time reading, I started noticing the formulaic nature of a lot of the books, not to mention some atrocious quality issues and that lead me to beta reading. I joined some groups on FB, read some interesting manuscripts, and finally felt brave enough to share parts of my manuscript with a few people, including one full exchange. I valued the feedback and wrote several more drafts but I really suck at rewriting. “Killing my darlings”? Yeah, I suck.
What sucked even more, was that even though I was proud of having written it, when I asked myself “What is this book actually about?” You know, that rather important question you should ask yourself BEFORE you write 80,000 words? I had no idea, really, and ‘it’s the story of how I met my husband’ is just, well, blah. While I will always love reading that story, and maybe someday I will rework it so it actually follows proper novel structure, for now it hibernates.
I’ve started a few other projects since then, but I usually get to chapter 7 or 8 and it fizzles out, or my brain decides to start a different story. My latest project has made it to chapter 11 because I finally decided to try outlining, and found some awesome books and resources from C.S. Lakin at Live, Write, Thrive. Thanks, Suzanne!
The other tip I have been making myself stick to is to Just. Keep. Writing. I’m a terrible perfectionist and will reread the same chapter 16 times, trying to fix it but unsure how. So, I’m not letting myself look back more than a few paragraphs each day until I finish the first draft.
To keep up the forward momentum I signed up for Camp NaNoWriMo for the first time starting July 1st, with a word goal of 30,000. It is really helpful to have a virtual writing group that is all working towards a similar goal. So far, I have written over 9,300 words and am enjoying getting into a more regular writing routine.
Launching this blog last month was a huge step in getting over the phobia of sharing my writing. I started this way back in November 2016, but didn’t have the nerve to actually share it until June 2018. Imagine my surprise when I finally launched and the Bad Writing Police didn’t show up at my door to confiscate my iPad. People were more supportive and encouraging than I could have imagined. Not to mention that I picked up almost 100 followers from that first post! Mind. Blown.
I thought I would be tapping away and sharing in solitude, happy if even one person from my personal life bothered to read my ramblings. And frankly, even if nobody followed I would keep going. That’s a lie. Knowing my words might have meaning to even just one other person is huge.
In light of my commitment to myself to #facethefear, in September I’m going to a writing retreat. I am equal parts excited and terrified. Sharing my writing with people face to face? Ack! I’ll let you know how that goes, it should be a great adventure.
Any other writers out there? I’d love to hear your stories. If you have a phobia about writing, I strongly encourage you to give it a try. Whether you choose to make up stories or write down some of your own, there is something magical that happens when you silence that inner critic and let your words flow; it allows you access to a part of yourself that perhaps has been hiding for too long. You don’t have to share it, just write it. You may surprise yourself.
Wow, this was a long post. Thanks so much if you stuck with me to the end!
Have a great week everyone!
❤️ Amanda
** A book series I recommend for romance, vicarious travelling and delicious food descriptions, is Laura Bradbury‘s ‘Grape’ series. Laura understands the Spoonie life better than anybody. She had a liver transplant last year for a rare, life-threatening autoimmune disease, and is making the most of her new lease on life. She recently released My Grape Paris which brought me right back to the six months I lived in Paris around the same time. They have villas to rent in France, too!
On June 28, 2018, I walked out of ‘my’ classroom for the last time. I haven’t been teaching for the last three years thanks to the monster, but it was still my position and my room to come back to, if I was able. No more.
I went back to pick up this clown (I know, weird.) that I used to have in my childhood bedroom. I used him to teach about perseverance and hanging on when things get difficult so it seemed appropriate to bring him home and hang him in the garden. I had forgotten that I had about ten other boxes of teaching resources that I had created and stored away, as well as various toys and games.
Besides retrieving some stationary supplies and containers that I had bought myself, I also came across a file of photos and special thank you cards I had received over the years. Before I thought to have a look at them and focus on the good, I had to let myself wallow in the sadness for awhile. I tried distracting myself with feel-good videos on Facebook, but the words and emotions had to come out.
The End
The words won’t come
It hurts too much
Distract
Distract
This time the pain’s not physical.
The road stretches in front
Up hills and
Down
But you’re never prepared
For the S curve.
Suddenly
Life changes direction
Floundering
Stumbling
This pain is not physical.
What if?
How come?
Did I?
And the ever popular
Why me?
A career takes a long time to build
So many layers of learning
Acquired only through years of experience
Successes
Failures
But always growth.
Over
The end
No fanfare
No goodbye
Sorting through once important things
Leaving it all behind for others
Hopefully not for the garbage
This pain is not physical.
This pain is suffocating.
Heavy. As I’ve gotten older, my eyes have started doing this terrible swelling thing whenever I cry. I look like the poor kid from ‘Mask’ today. But, perspective has returned.
I can’t change the direction my life has taken, all I can do is make the most of where I’m going. I may not have had as many years as I would have liked to become the teacher I wanted to be, but I have so many wonderful memories. The feeling of knowing that you have touched young lives and started off their educational journey on a positive note, is priceless.
Eager students, brilliant colleagues, appreciative parents and the wonder and simplicity of kid art. These are the things I choose to focus on, instead of what might have been. Life only goes in one direction. I’m on a new path and I’m going to continue striving to do the best I can and be the best person I can be. In that way, nothing has changed.
Cherubic faces and cherished colleaguesParents taking the time to acknowledge means so muchAnd even more from the kids! Love their phonetic spelling. 🙂
Toot toot! Such a thoughtful gift from a parent.
The list above was part of a time capsule project in celebration of the centennial of our school. I love how many of them spoke about extra play time after recess. Kids learn through play, and they know it.
I want to end this post on a lighter note with some of the cute and often mind-blowingly wise answers they gave to the question:
“What advice would you give to future generations?”
– Follow what the teacher tells you to do. Have a really good life, be smart, grow up to be really proud about yourself.
– Don’t worry.
– I would give homeless people a home, I would make everything in the world free, I would make as much water as there could be, and I would make sure the world never ends.
– If somebody didn’t know they were being a little mean, I would like to tell them not to be mean.
– Take care of yourself.
– To be a good learner.
– That recess is an hour long and the time to eat their lunch is longer so they don’t have to rush, and that they get lots of playtime. Pets in the school, a bunch of flowers for the field and lollipops for life.
– Keep safe. Grow more trees.
– If they didn’t know how to fly a kite I would teach them.
– Don’t play with matches.
– Go west, that’s the best way to go. (🤣 Boy, I loved that kid! You can just imagine…)
– Know how to play video games.
– Give them advice on how to be a good spy.
– Listen to their teacher and love their family.
– Have fun and learn lots.
– Work hard.
– Love is the most important thing.
I’d say they pretty much have it covered. 😊
On a final note, I am so grateful for the support I have received from people in my personal life as well as many unmet fellow Spoonies in this new chapter. There is an awful lot of ugliness in the world and unfortunately that is often the focus in the news. There is also a lot of love, empathy and compassion flowing quietly underneath. Thank you so much to the kind souls who have reached out in support and understanding, it helps so much. Love is, truly, the most important thing.
Thanks so much for stopping by. Have a wonderful week!
❤️ Amanda
When the going gets tough, hang on tight. Try again tomorrow. 💕
View of the beach emerging from the private trail from our campsite. Photo: M. Cockayne
I am so incredibly fortunate to live on Vancouver Island. As I said in my last post, I was off camping last week at Pachena Bay Campground which is on the west coast near Bamfield, BC. The drive is an adventure in itself, two and half hours on dusty, bumpy logging roads from Port Alberni. Every teeth-chattering, slow-going minute is worth it once you arrive, though.
As it turned out, the first day was the nicest weather we had so it wasn’t exactly the tropical vacation we hoped for. When you’re camping in a coastal temperate rainforest, you take your chances. Instead of sweltering in the heat wave the rest of the island and most of North America it seems, was suffering, we were in our layers of fleece, toques and rain jackets. Like most MSers, I’d rather a bit of fog, wind and misty rain than having the carnival of symptoms start when my body temperature rises.
Change in the weather, the fog rolls in.Fog is a regular occurrence but often blows off later in the afternoon or early evening.
When the tide is out, the enormous beach triples in size, impossible to capture in a photo. One day, we walked far out along the beach exploring tide pools towards the beginning of The West Coast Trail. We were going to walk a bit of the trail until we got to some of the ladders, which we have done in the past. Almost there, I looked down and saw this:
Would you turn around or take your chances? Photo: M.Cockayne
The beautiful patterns in the sand with the fresh bear tracks leading away made the moment magical. And sped up our pace on the way back! Photo: M. Cockayne
We knew we were in bear and cougar country but seeing fresh evidence that we were right on the heels of Baloo? Yes, we turned around and headed back towards the main beach. ☺️ (Photo credits to Miranda Cockayne as my dinosaur of an iPhone died.)
Four days and nights of living in the forest, sharing secrets and too many laughs with one of my longest (not oldest, see what I did there? 😉) and dearest friends, building fires on the beach, watching the ospreys and eagles diving into the ocean, unplugging from the world (for the most part, they have wifi at the main office now), and plugging into the inspiration I always feel when I remove myself from the manmade and reconnect with the natural world.
It’s even worth the week of recovery from not sleeping and just being out of my usual routine. No matter how careful I am about eating well and hydrating, I never sleep well when camping or away from my own bed, actually. Are other MSers and chronically ill people the same? Does a change in your routine inevitably exacerbate your symptoms?
One thing I will make sure we do next year, is go on a Kiixin Tour.
“Kiix̣in is the site of a 19th-century village and fortress that exhibits evidence of occupation dating to 1000 B.C.E. Today, it remains a sacred site to the present-day Huu-ay-aht First Nations.”
This is my camping partner-in-crime from our trip in 2015.
On the west coast of Vancouver Island, this is my favourite place in the world. Like many people, any beach immediately relieves my stress and clears my head. It can be difficult for people with mobility issues to enjoy the beach or get out in nature, but a daily dose of connection with our natural world is what’s missing from many people’s lives as we become more isolated in our screen-centred world. The increase in depression and anxiety, especially in teens, is not a coincidence.
Meditation is a buzzword these days, for good reason. The world is busy and hyper-connected in a mostly superficial way through social media. Studies have shown that daily meditation can help with depression, and depression is a common symptom of MS. There are some great meditation apps out there but for me, the easiest form of meditation is staring at nature.
Often I’ll drive to the beach and just sit in my car, windows down, to hear the soothing rhythm of the waves. In my backyard, just watching the bees bumble from flower to flower stills my mind and lifts my spirits. On bed-bound days, I look out the window and watch the leaves rustling in the wind, imagining the energy of nature infusing my body. Still waiting for that one to work. 😏 SimplyWendi shared a fantastic list of live webcams over at Simply Chronically Ill; https://simplychronicallyill.com/2018/06/15/some-of-my-favorite-live-webcams/ Thanks, Wendi! When all else fails, there is Google Earth!
Meditation doesn’t have to be a structured event, unless that’s how you groove. The important thing is to give your mind a break from worrying about the infinite details of daily life. Obviously chronic pain and illness adds a whole other element to the equation. It’s difficult to focus on something else when your nervous system is lit up like the tree at Rockefeller Center, but that’s why it’s even more important to train your mind to focus on the beauty of nature.
Happily, I’m on an upward swing on the roller coaster at the moment so I’m really looking forward to camping for four days. I was nervous to camp for a couple of years after diagnosis, worried that something would happen when I was in the middle of nowhere. Three years on and I’m more familiar with the daily onslaught of varying symptoms. I can’t live my life in fear of a relapse, time marches on regardless and I have adventures calling me.
The beautiful patterns in the sand with the fresh bear tracks leading away made the moment magical. And sped up our pace on the way back! Photo: M. Cockayne
Walk a Myelin My Shoes 