Toot toot! I normally only post once a week, but I had to share. Despite that crazy old gal Life tossing all sorts of obstacles in my way this month, I managed to succeed at the word count goal I set for myself for Camp Nanowrimo.
I had no idea how many words I would need to finish my current work in progress. That’s some weird writer science that writers can decide how long their project will be and actually hit that target. I’m still in the amoeba stage as a writer so I had no idea.
I wanted to set a manageable goal to increase my chances of success (lower that bar, baby!), so instead of the suggested goal of 50,000 words, I set mine for 30,000. I didn’t manage to write every day, and I had to pull a late-night writing sprint last night to give myself a real shot, but I did it.
I’m almost finished the first draft, and I’ve gotten into a more regular writing routine. I’m excited about the shape my project is taking and I’m motivated to get this puppy done by the end of August. That’s all I hoped to achieve and I have to say it feels pretty damn amazing!
Other exciting news that happened almost at the same time – I got my 150th follower! I had set a flexible goal of seeing if I could reach 150 by the end of the summer, to be there already made my day. Thanks incurable dreamer for making that happen! You should check out her blog, she shares some amazing posts.
Thank you so much to all my followers, anyone who reads a post, and those who take the time to comment. I was so afraid to dip my toes in this pool, and it’s the best thing I’ve done for myself in years. I have already met amazing people online that I consider friends and it’s cathartic to share this journey that used to be so isolating and lonely.
Mille mercis! Danke Schon! Muchas gracias!!!
❤️ Amanda
EDIT: Don’t ever hit the disconnect on your Facebook profile in your wordpress account, even though wordpress can no longer publish posts to your profile. I lost almost half my followers by doing that, and am slowly creeping my way back up. 😩
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.”
I want to talk about the journey to ms diagnosis. For some, the trip is brutally short. Bam! They wake up and their whole left side is paralyzed, or they’re blind in one eye. Terrifying. No question that any person would head to the hospital, or at least the doctor and they would be taken seriously.
Usually, a trip to the ER would mean an MRI, possible lumbar puncture (sooo glad I avoided that!) and subsequent diagnosis of multiple sclerosis. Some get picky and call it CIS (clinically isolated syndrome) until the monster rears its ugly head again, hence the multiple in multiple sclerosis.
I suspect many people in this position start connecting the dots of other strange symptoms they’ve had for years, once the inciting incident of the diagnosis journey appears, with the exception of those diagnosed very young, of course. I can’t really speak to that though, because that was not my journey.
What about those who present with weird virus-y symptoms?
The first episode of fatigue, brain fog and vertigo when I was 22, had me sleeping in the back of my orange Westfalia on the streets of Puebla, Mexico, alone, peeing in the sink for three days. I figured it was a strange Mexican virus – thankfully not from Montezuma!
The second incident two years later, in Lagos, Portugal, I was stuck in a tent in a cinderblock wall campground, with stereos blaring on every side, peeing (sometimes unsuccessfully) in bottles, in front of my boyfriend. I knew then he was a keeper! 😊💕 Okay, bladder issues are certainly an ms symptom but enough about urine!
A couple of months before my first relapse. I sold the van to my brother. He never knew this story. Sorry dude! 😬
I had one more relapse the following year, during my final teaching practicum. The monster’s timing is exquisite. The doctors that I saw during these times, in the early 1990s, checked for parasites and infections because of the travelling link but when they found nothing, they shrugged and pushed me out the door.
Then, the monster slept. With the exception of some ear-splitting tinnitus when we lived in New Zealand which was ascribed to stress (believable as we were living on a student’s income halfway around the world with a newborn), I had no relapses for about 13 years.
After the birth of our third child and subsequently returning to work part-time, I started having these weird ‘blips’, that I again thought was a virus. Pretty soon, I realized it was hitting me every six months or so, knocking me out for longer each time.
There was no paralysis. No blindness. No alarming symptoms that justified an emergency room visit. Just an exhaustion that felt like the power of gravity had increased ten thousandfold, a weird bubbly feeling in my head and an all over body ache that made me feel like I’d been poisoned.
I saw so many doctors during this time, and every single one of them listened to my symptoms, frowned, shrugged and told me to stop working so hard. Or maybe I was depressed. Or it was just a virus. Or it was idiopathic. That last word, meaning ‘they just can’t figure it the hell out’ was said by a very tall, male doctor looming over me in his office, forcing me to crane my neck to look up at him. The subtext of his message was ‘get over it, lady’.
Two problems
I have two problems with this. First, the number one symptom of ms is fatigue, which was my number one symptom. Also, I live in Canada which has one of the highest rates of ms in the world (MS Society of Canada estimates 1 in 340 people), yet NOT ONE of the 15-20 doctors I saw ever mentioned it.
I don’t think this is solely an issue related to the difficulty of diagnosing multiple sclerosis because it is such a misunderstood, unpredictable, individual disease. It’s a women’s health issue generally. I have heard so many stories about women’s health concerns being dismissed or downplayed or worse, drugged by overworked, distracted doctors.
Why is this? Do doctors really think women have nothing better to do than come to their office to ‘whine’ about something that’s ‘all in their head’? I’ve gotten equally dismissive treatment from both men and women doctors, so it’s not a patriarchal problem. It’s as though those that enter the hallowed halls of physician-dom are doomed to condescend to women, believing they’re choosing to spend their lives pretending to feel like shit, just to get attention.
I never watched the Golden Girls, but this clip explains it brilliantly.
You go, Bea! I would like to go back and have it out with some of the doctors who made me feel ashamed and ridiculous for pursuing answers when I knew something was wrong.
Conclusion
I am sharing my personal diagnosis story today because awareness is still so lacking about this ugly disease, despite how common it is. When I was undiagnosed, I searched all over the internet for people sharing stories like mine and found very, very few. Also, I think women need to support each other in managing their health, and that starts with conversation.
If you or anyone you know is experiencing strange symptoms, don’t ignore them. Advocate for yourself, you know your body better than anyone else can. Don’t let doctors blow you off and don’t stop searching until you get the answers you need.
Doctors hate it when you use ‘Dr. Google’, and you do have to be really, really careful. But until we sort out a healthcare system where doctors aren’t working on an assembly line, it seems to be the most knowledgeable, and least condescending doctor around. No offence to any of the doctors out there with integrity, I just haven’t met any of you.
Do you have a crazy diagnosis story? Please share, I’d love to hear from you.
❤️ Amanda
By the way, it was a naturopath that finally listened to my story and first mentioned the words multiple sclerosis. I was finally diagnosed 23 years after my first relapse.
First of all, I have to acknowledge the overwhelming positive support I got for my last post from my various ms ‘families’. For an introvert that overanalyses every social interaction (yeah, I think they call that social anxiety 🤔 ), it took me a long time to put myself out in cyber world and open myself to potential criticism. Not that I expect rave reviews, constructive feedback is always welcome. But we all know that feeling of ‘what if everybody hates it?’ Right? Everybody feels that, right? 😉
Anyway, thank you to everybody who clicked and read and commented! I am astounded at the support and encouragement, and so grateful to be a member of such amazing, caring groups.
This is a poem I wrote when I was amping myself up to share my writing. Fear is another of those emotions, like guilt, that many of us try to ignore or fight against. There is a tendency to distract ourselves from the ‘negative’ emotions in life but when we face them head on they provide the counterbalance to the positive emotions we all strive for. You can’t have one without the other.
While fear is a universal emotion, it develops a particularly strong flavour when one receives a diagnosis of multiple sclerosis. Being told you have an incurable neurodegenerative disease, that nobody knows what causes it and there is no way to predict what damage will be inflicted on your body, introduces a whole new level of trepidation. Add to that the daily adventure of never knowing what symptoms might crop up to stop you or slow you down, and the accumulation of disabilities that strip away the identity you have built up over years or decades, and the fear can be paralysing.
I’m coming up on the third anniversary (that so does not seem the right word) of my diagnosis. Three years since I left the classroom. Three years coming to terms with my new normal, trying to heal and to carve a new identity for myself. I realize now that fear was the main thing holding me back from moving on to a new chapter. It’s still there, making my palms sweat as I type this, imagining putting out another piece of myself. But I will face the fear, because if there is one thing I have learned over the past three years, stagnating is not an option and pushing through the fear is the only way to get to the light.
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 