The second day of the conference dawned, sunny and early, and closed with an attitude of hopeful optimism. One of the most interesting experiences at the Lyme Disease Framework Conference today was listening to 4 experts in various fields shed light on progress and problems with Lyme disease testing and diagnosis. This is certainly the ‘hot-button’ topic of the conference, and of the controversy in general, but I came away with pride in the mostly respectful interactions that occurred. A few years ago, the polarizing climate of anger would have made these talk downright impossible. We’ve moved forward as a collective. And that’s encouraging to see. there was so much to digest today, but I feel like after so many years of hitting brick walls, we are finally on the road to change.
You thought we’d been fighting for only 40 years?Trying 5000 years…feels about right #iceman #otzi #lymeconference pic.twitter.com/mNg6MlpBr5
— Nicole Bottles (@nbandlyme) May 16, 2016
It was an extremely productive day but a draining one. Kindly walk past my absurd grammar mistakes and typos. Nothing to see there ;). I am so beyond exhausted, but wanted to throw down a few thoughts before getting up tomorrow to attend the final day, where we will be making extremely important suggestions for the framework.
The conference moderator Mr. Normandeau set the tone by encouraging us “to be hard on the issues and soft on the people”. His summation of the points patients and advocates raised last night when we briefly shared our stories was on point.
We as a community have every right to be angry, to be furious at the systemic problems and physicians that left so many patients untreated or reeling from misdiagnoses. The conference is not the time to vent that 27+ year anger, but channel those emotions into more productive areas. But today for the most part, we set aside our (surface) anger to focus on the task at hand. It got tense. At one point, Dr. Bowie said during the course of the afternoon that if a certain proposed clinical trial was done, he would “throw a fit”. Many Lyme patients would have had just justifiably thrown a fit over other issues 😉 , but thankfully we mostly kept our collective cool. Dr Maloney responded with a quick comeback:
“Prepare to have a fit” – Dr Maloney = priceless. https://t.co/geTyNBI2ed
— Nicole Bottles (@nbandlyme) May 16, 2016
It was certainly eye-opening to hear “familiar” research cited as against the argument of the persistence of Lyme disease post-treatment, and to hear studies about which I’ve read many articles examining their shortcomings be presented as definitive. I was at first frustrated. The bias was palpable. And then I recalled one of the first lessons I learned in history class; that identifying bias is far from a negative thing; everyone has bias, and it tells us where the author is coming from, and neutrally acknowledging bias helps place their comments in context. When examining information from biased sources (and we’re all biased) it’s key to focus on what the differing points are. Once I reshuffled my thinking, I found I learned a great deal about what we might call the CDC/IDSA stance on Lyme disease.
Judging only from what I heard today, and trying to detach myself from my personal bias of 8+ years of background knowledge, I heard these doctors and researchers express their concerns over efficacy of long-term antibiotics [based on research they believed credible (even though many admitted short-comings in the research, which ranged from data collected at uneven times, small control group, and too small a ‘cohort’)], the side effects, the need for more research and the dangers of diagnosing someone with a disease they may not have. Okay, fair enough concerns. However, if you’re a Lyme patient, you feel a sense of urgency to do something, so you don’t get sicker. I recognize that this isn’t something you can understand until to feel the infection in your bones. I wish the issue of informed consent for treating patients longer had come up. I was confused because of the back-and-forth conflicting information on whether or not Lyme disease needs to be a ‘clinical diagnosis’ or not, and what the criteria would be. Arg.
Their were high points and low points in the day. The audience was rightfully outraged when Dr. Patrick of the BCCDC, in response to a question from an audience member said he didn’t want doctors making a hocus pocus 19th century-style clinical diagnosis. Whatevadafuck that’s supposed to mean. I found it quite shocking, personally.
“Why not using clinically diagnosis?” “We don’t want a hocus pocus diagnosis…” – Patrick #lymeconference#naileditpic.twitter.com/QhfTKlagQN
— Nicole Bottles (@nbandlyme) May 16, 2016
Without commenting on the genuineness of their surprise, the CDC/IDSA-supportors seemed to be disbelieving that patients with an erythema migrans (or ‘bull’s eye rash’) wouldn’t be given treatment in a doctors office, or were required to do testing first (which all parties agree is very inaccurate in early stages). They seemed surprised when multiple patients shared similar experiences. And made it very very clear that the “guidelines were just guidelines” and even expressed confusion why the Lyme disease community was insinuating that doctors needed to treat them “like they were set in stone”? Is it possible they were unaware that there was at least one doctor in the crowd who’d been forced into retirement because they dared to treat ‘outside the guidelines’, or that there are a whole host of physicians who have closed their practice for similar reasons? Curious-er and curious-er. It made it clear to me just how critical it is for all stakeholders to come together for this conference; so we can lay all our concerns on the table, and find common ground. Building suggestions for the framework begins tomorrow, and I expect that will be h.e.a.t.e.d.
I swear in the 7 hours I was there, we collectively agreed on things, most importantly that patients are suffering, and it needs to be addressed now. There’s no quick fix, and I came into this knowing and expecting that. We have work ahead of us. The hardest work begins after the Framework is release: getting the Provinces to implement it. But that’s a battle for the future. One bridge at a time.
Depending on my energy, I’ll be tweeting from the conference. You may have noticed my innate wordiness which I battle in every sentence, so you can imagine sticking to 140 characters was a challenge. I’m at @nbandlyme and in case you’re wanted to join the convo, the hashtag is #lymeconference.
See you all bright and early tomorrow for the culmination of almost 4 years of hard work bringing bill C442, Federal Framework on Lyme Disease Act, into law. Well done, team. Special shout-out to Elizabeth May for making this possible, and giving hope to so many. <3
I wish my Dad could have been at the National Lyme disease Framework conference tonight. He would have been so proud of this community, and of what we hope is the beginning of big changes. Dad never made it a secret that he was proud of me in all things, but especially of my advocacy work and writing, which meant the world to me <3.
I am so beyond drained. It’s been a rough past month, emotionally and physically, but I’m not going to talk about that right now. I really want to talk about the incredible evening at the commencement of the Framework Conference in Ottawa, our nations capital. After literally years of work. lobbying over 80 MP’s and Senators, community activism, letter writing, and speech making, we’re nearing the home stretch of the goal of Elizabeth May’s Bill C442, which called upon the Federal Government to host a strategy conference to confront Lyme Disease. We heard from well over 100 patients and advocates tonight, whose 5 minute talks were extremely compelling and emotionally intense. Over 12 hours of testimony was recorded tonight, with four rooms of simultaneous speakers. It was incredible to see a community of the disenfranchised, seriously ill, and medically neglected come together in such a strong show of support. I think we sent the message very clear that we are here. We aren’t going away…the movement is only growing in strength and sadly, in numbers.
I hope you had a chance to catch the speakers tonight (you can register here although I’ve heard people had some trouble with this!). There was an incredible feeling in the room, and our collective stories inform the conference, moving forward. I’d like to share with you my speech from the evening.
Hello. My name is Nicole Bottles, I’m 23, from Victoria, BC and a board member of the Lyme Disease Association of BC. I would like to tell you how I ended up rolling in here today, 8 years after my initial diagnosis. And it begins with a tick the size of a poppy seed. My story reflects the experience of many Canadians, who follow a similar journey: a mysterious illness, multiple specialist visits, extensive lab work, and culminates – possibly years later – with misdiagnosis or no diagnosis at all. Tragically, delay in treatment gives the borrelia time to disseminate, and makes it more difficult, if not downright impossible, to treat and eradicate.
In 2008 I was a healthy, straight-A student. I loved my school, choir, hiking and kayaking. It took several months, and one tick bite, to change my life. During my grade 10 year, I never recovered after a prolonged flu-like illness. Not having the strength to get out of bed, even for an hour of school was one of the hardest, and scariest realizations of my life. I went downhill very quickly, and within a few months required a wheelchair, and experienced intense chronic pain, swollen joints, exhaustion, and severe short-term memory and cognitive impairment. Trips to many specialists and diagnostic tests were fruitless. By chance, we learned about Lyme Disease, and the host of seemingly unconnected symptoms made sense. The symptoms I developed were a classic manifestation of Lyme Disease and I was so relieved. I thought “now all I have to do is a quick treatment and I’ll have my life back”. Needless to say, 8 years later, it is not that simple.
I had a negative Lyme test result, like so many other Canadians, and versus making a clinical diagnosis, most doctors rely on this flawed lab test to diagnose Lyme disease. If someone is diagnosed and treated immediately, a $100 of antibiotics should see them returned to health. The cost of my own treatment has been well over 1000 times that amount. I am one of the lucky ones who was able to seek guidance of four leading US experts. Friends, family and community donated at fundraisers to support my treatment outside the country, which isn’t covered by our health care plan. A 2006 study from the US CDC by Zhang et al. (who we’re fortunate will be speaking later), found that the annual “burden of disease” (the BOD) when Lyme was treated early was under fifteen hundred dollars, for only one year. If the illness was left untreated, developing into a chronic infection, the “BOD” jumped to sixteen thousand per year, every year. The cost of being misdiagnosed is astronomical for our health care system. The cost to patients could be their lives.
Our nation is on the cusp of creating a paradigm shift in the way we confront Lyme disease. Time is ticking as our communities encroach on wildlife habitat and the climate changes, leading to an explosion in tick populations. The National Lyme Disease Framework has the potential to be the catalyst for change. It has already brought us together; patients, advocates, physicians, researchers, Public Health Officials. Through reconciling the two standards of care into a workable set of guidelines, we can transform a static situation into a constructive environment for patient care.
I could talk about the need to rewrite the diagnostic algorithm, invest in active surveillance, address the limitations of testing, and physician awareness, but the overarching theme echoed here today is concise; education, prevention, treatment, and testing. Simple enough, in practice, to implement. However, patients continually battle an incredible stigma every time we walk into a doctor’s office, which is why we need strong leadership and open-mindedness from all of us here in order to move forward. We have been extremely patient. But as more and more Canadians fall ill, our community feels a sense of urgency to ensure that others don’t have to experience devastating affects of not only loosing their quality of life, but struggling to receive treatment. We must do better. And we’re optimistic that this chance to work together for the well-being of all Canadians will finally commence an era where a walk in the woods is no longer a debilitating activity. ~
I feel such gratitude to be part of this conference, and to do my part to ensure others don’t have to face similar problems. Is a 3 day conference going to fix 3 decades with of problems? Of course not. But I’m optimistic that this is the real beginning of the paradigm shift, that the tectonic plates of patient advocacy, medical research, and collective compassion will press together and create the first ripples of change. Drinking tea and eating pineapple in the same room as public health officials and scientists from all sides of this issue is a damn fine start.
This quote that keeps playing through my mind tonight, and as I look forward to a very early morning and full day tomorrow;
“Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek.”
~ President Barack Obama
So welcome, bringers of change. Keep fighting. Keep moving forward. It’s the only place we are wiling to go.
We’d be in the middle of a cutthroat game of canasta, or I’d be caramelizing onions in his vintage copper-bottom pan, knitting or reading on the couch, and he’d suddenly look at me intensely.
My father spent 69 incredible years on this planet. I only wish that I had known him for longer than my 23. But it wasn’t only 23 years, was it?, because Dad and I measured in some other unit of time; moments.
At the end of Whiffen Spit in Sooke where we’d taken many a walk, was a bench. After the long walk to the end of the point, we’d sit for moments and take in the sights. Rocks hurled up the strand, kelp strewn on the beach, the lighthouse, seagulls, undulating currents, the lush evergreens of East Sooke, which several years later would become our home. The bench was placed there in memory of someone elses loved ones, and bore the quote, “Life is not measured by the number of breaths we take, but by the moments that take our breath away.” Both of my parents loved that quote, and the sentiment. My parents taught me to seek out those breath-taking moments, to trust in my heart and passions and to treat others with compassion [unless they are telemarketers ;), I’m sort of joking. ]. I am so grateful.
Let’s raise a glass to my Dad, Dave Bottles. A man who’s last night quite literally hinted at his destiny <3. My father drank deeply of this world. And encouraged me to do the same.
here is the deepest secret nobody knows(here is the root of the root and the bud of the budand the sky of the sky of a tree called life;which growshigher than soul can hope or mind can hide)and this is the wonder that’s keeping the stars aparti carry your heart(i carry it in my heart)~ e.e. cummings
If I do not write this today, I fear I won’t be able to write them for the chasm of grief in me.
A couple of days ago, Dad looked at me, said “Hi”, and squeezed my hand and it was the most magical, perfect moment. I don’t think there is an adjective for that emotion. I might be able to play it on the piano, or pick out a paint chip to match the color of it, but it wouldn’t be quite right. Because it couldn’t come close.
Yesterday, we figured out a way that I could lie next to him, so I could bury my face in his shoulder, and be able to kiss his cheek, and hold his hand comfortably. He knew we were there, and that was enough for us.
We spent the afternoon, and long into the evening in his hospital room. I sense with every achingly difficult breath he takes, that a bit of his spirit, his soul, or whatever it is that has made him “Dave” for 69 incredible years, is fading. There are long pausing in his breathing, which make me catch mine and in a weird way hope it is the final silence of his body. He did not wish to linger in his leaving of the world. His body is so hot, almost feverish, and trembles slightly. I can hear his heart thundering in his chest. I wish I could describe the sound of my fathers heartbeat, because it is a beautiful sound. It’s a bit like the tone a rubber band plays when stretched, slightly taught between thumb and forefinger, but also the sound you hear in seashells. I know it beats “I love you” in 2/4 time.
As I was writing this, Mum came in to tell me the lovely nurse called around 2 am, to tell us there had been a change in Dad’s breathing, in case we wanted to come. I spent the night with him, curled next to him, holding his hand, until the sun came up.
Deep peace of the flowing air to you.
Deep peace of the quiet earth to you.
Deep peace of the shining stars to you.
Deep peace of the gentle night to you.
Moon and stars pour their healing light on you.
~ a Gaelic blessing <3
It was a beautiful day here. The kind of day that makes the East Coast jealous 😉. Blue sky. A freshness in the air, a hint of spring at the corners of flower beds. Summer is a sweet far thing.
As the sun sets, I’m sitting on Willows beach. I’m mildly freezing but it’s worth it to see the sky fade from brightest blue to faint pastels, a hint of pink and orange touching the edges of the clouds that cling close to the land. I’m grateful it’s such a beautiful day. It makes everything better.We spent the afternoon at the hospital. My dad sleeps almost all the time. He isn’t in pain. That’s exactly what he wanted. We asked he be taken off the medications they were giving him, to turn off his pacemaker, and let him be. No subject has ever been taboo, and I’m grateful to have been able to discuss birth, death and miracles in between with my family, and mum and I are deeply respectful of those wishes. I want him to be at peace, with just his breath and heartbeat, and feeling the love, us at his side until the end of this wild journey that we had the privilege of sharing.
I feel like there are tight hands around my heart. A tight fist of panic and grief. It feels as though I can scarcely breathe. I worry what it will mean when the hands release, with a final sigh of breathe. The sound and smell of the ocean calmed me. Steady waves gently rolling in to cover the bare beach. I can control them no more than my fathers breaths, but I can observe and cherish each. Footprints track through the rocky beach, but the birds seem few, and the last dogs and people turn in. A part of me wants to lean closer to the waves, to listen to what they whisper, for them to wash over me and wash away this feeling. But this feeling is a reflection of a life lived with love. It is a beautiful reminder of how deeply we as humans are able to feel.
I brought my dad a bouquet of flowers from the home garden. It’s a wild space, and beautiful for it. Lavender, Rosemary flowers, dandelions, heather, delicate weeds I have no name for. Dad loves to see my face light up when he gives me flowers, and it brought my heart solace to do the same for him, even if he sees them only in dreams, or catches a whif of Rosemary.
Thank you all so much for your beautiful words. It means the world to my mum and I. I’m so blessed to have been born to the parents I have, and feel such gratitude that they know my love, and see the joy they bring to my infinite moments. 💜
Life begins with a promise. It is promised, when you are born, that one day you will die. You might spend 20 minutes on Earth, or revolve around the sun 60 years, or tomorrow, or 3 weeks from now. I guess in order to keep living, we pretend this isn’t true, like when you’re rereading a great book and try not to think about the ending you know is coming, so it won’t spoil the journey. There feels like there is always another tomorrow, and one after that, and the one after that…on and on unto the end of your imagination.
I became aware I was a mortal at a very young age. I was diagnosed with a genetic condition which predisposes me to tumors when I was 3 (that’s when I first remember it being explained to me). I became aware that tomorrow wasn’t promised. That there was only one promise the planet had yet to keep; that I would die. That we would all die. The first promise, my birth, had been fulfilled, and every moment was a gift. I lived every day after that with the intention of filling every second of existence with an infinite infinity of moments, memories, love.
It was easy. It was impossible. I failed. I succeed. I tried, though, and that’s the most important part. I try.
I tell my parents I love them, and hug and kiss them every night. I say goodnight, as though this might be the end of the Earth’s promise. That the tomorrow which is just dreams away might not be waiting for me. That tomorrow might move on without one of us. I’ve never told them that when I said “goodnight” and “je t’aime”, I was really whispering in my heart “goodbye”. I never wished to say a last goodbye.
So I am not wishing my father goodnight. Or goodbye. I am whispering to him with every breath we breathe together in our existence that I love him. And those are the words that have always meant everything and encompassed all.
I can’t even bring myself to type the word. That word. The word that is so final, so absolute, that once I type it, I won’t be able to see from the tears that roll down my chin. I’m not ready for a salt-stained keyboard. So I won’t. My father is taking a journey, a journey to a somewhere, a somewhere neither of us understands. He has stage 4 lymphoma. 2 weeks ago he was flummoxing me at Scrabble with his funny made-up words, eating dinner together, teasing me about how much onions I put in everything, walking, buying groceries, reading, snuggling with me. He was doing the ordinary things that make every moment extraordinary, and make up our infinity. He also went profoundly deaf, a side effect of the chemo. So we were also playing like the worst, most hysterical version of “Telephone” the planet has ever seen. So much was lost in translation, in deafness, but the love was not. Last week, we think he blacked out or his heart stopped, causing him to have a car crash (no one was hurt. not even him.). He went to ER, where he seemed alright, if a little confused and “odd”. But something as “off”. They admitted him, and he went downhill so quickly. He got a pacemaker, to combat the effects of the chemo, which were finally rearing their ugly head. After the surgery, he was very tired. A kind of tired which frightened me. Dad would wake up for a few minutes, maybe eat a little something, smile at me or say a little something, and then sleep again. Today he did that less. He is slowly walking away from me and I cannot catch up.
I’ve spent the past few days bawling at inopportune times, and wetting my dad’s pillow with tears (sorry-not-sorry). I need to make these moments even more infinitely infinite than they always have been. Because I need to store them in my heart.
I do not know how much time he has left with us. I never have. It is an unknowable thing, and we are blessed with this ignorance. Because the knowing would break us. It is breaking me. Cancer is terrifying because it makes you see the final promise looming ever-nearer.
He once told me he never imagined having children, but that he couldn’t imagine his life without me. <3
There is never enough time to be with the ones you love. A thousand lifetimes and the last “I love you’s” would still break my soul. I am so grateful for being a part of my Dad’s incredible journey on Earth.
And feel deep gratitude and love for all possible moments we’ve shared together, past, present and future <3.
I had the pleasure of connecting with Kerry, another young Lyme disease warrior early last week. She seems like such a sweetheart who has been through so much <3. Kerry’s not only on a journey to wellness, exploring alternative treatments and therapies, but a spiritual journey too.
Her story probably sounds familiar to a lot of you…tick bites in early childhood, later being diagnosed with autoimmune illnesses, generally feeling unwell until finally getting a Lyme disease diagnosis. In her words;
“Lyme disease has driven me to want to see and experience the world. My wake up call to always be wide awake.”
Pretty inspiring stuff, n’est pas?
You can read my interview on her blog, Body.Mind.Lyme here!
The night time holds a strange power over me. Not knowing if I will spend hours lying motionless, in turns reading; knitting; meditating; staring at the inside of my eyelids – or sleeping. When my head hits the pillow it sometimes feels like I am playing a game of chance, and I know in my heart that try as I can to boost my odds, sometimes I will loose. And I’m learning to embrace this roulette with courage and acceptance. For perhaps this falls under the category of “things I cannot change”.
Thank goodness for the sunrise. For a new day beginning just when you didn’t think the blackness of night would end. For mornings and the afternoons that follow, and for the promise they bring.
I have been sleeping much better since my last few treatments at the Hansa Clinic in Kansas [And I’m *so* grateful. . Why? No idea. Why did the dozen sleeping pills I’ve tried not work, or have the reverse affect? Why can I mediate for 8 hours, and not slip into sleep? Why can I stay awake for days and still be alert? Wouldn’t it be nice if the answer was I’m actually a Vampire, and I’ve replaced a need for sleep with a need for blood? Hold on, no … that would be awful. I’m a vegan. …
I no longer wish to be a vampire. Let it be struck from the records.
It still takes me what feels like an eternity to fall asleep, but most night it happens. A few hours feels delicious. Versus not sleeping at all several days a week, most nights I do catch a few winks. But it makes me crave more. I want to keep sleeping! It’s been so long since I’ve slept well that I feel the need to catch up, which apparently isn’t possible, but my brain doesn’t know that. It just wants more of that awesomeness. It’s hard to get up. But the sunlight is calling. And I answer.
I started this post at night, sprinkled a few words in the afternoon, and here I am again, another night. It’s a different perspective. At night, there is a sense of almost dread, exhausted by the uncertainty. And then during the afternoon, the day is so full of wonder. It’s waiting to be unrolled and for all the corners of time to be crept into. So full of magic and light and clouds and breaths.
Insomnia is a dragon-like beast that soars into evenings, leaving the umbra of it’s wings back-lit against the stillness. Did you see it’s scale flash as the film credits rolls? The cool shadow as you brushed your teeth. It flickers just out of sight until you clamber into pajamas and sheets.
And then I try to face the night with my eyes on the beauty of moonrise, and brilliant sunrise that is promised to follow.
Hi guys. I know, long time no talk. I feel a little awkward writing this, like when you run for the first time after taking a long break. It takes a little while to warm up, to remember the way words sound coming out of your mind with a click of keys. I keep hitting the backspace button…which is something I abhor. As you can probably tell. I’m a ‘stream of consciousness’ kind of girl. I don’t really know how to fill you in on all the things that have been happening in my life, or to explain why I stopped writing for awhile.
You know how when you’re reading a book, and you get an inkling as to where the story is heading. Foreshadowing. Or maybe you’re a hopeless romantic and you hope the girl ends up with the guy in the end, and the run off into the sunset, even though this is a post-apocalyptic zombie novel, and it’s looking like 90% likely that the said boy is possibly undergoing zombification, and you know in your heart it might not end that way. But you keep reading anyway. Hoping the ending would be satisfying, even if it turned out differently?
Writing about things that happen to you is kind of like that. But there are less zombies in my life, which I’m not sure is helping ;). I started this blog in 2008, when I needed something to keep me moving forward. That thing was words, that thing was things I didn’t remember doing, that thing was sharing all the myriad of wonders and pains and progress and fashioning all of that into hope. I wanted to be able to keep writing, and one day, I’d have a happy ending. I know how that ending will look. I see it so clearly. It ends with me quite literally walking off into the sunset, with health, with hope, and a future full of possibilities. So far I’m looking at 2/4, so not too shabby. But to be honest, this past year, which shall henceforth be known as the “year of the loud silence”, I was so ready for this chapter of my life to be over. I wanted to write a new story, a story about a girl going to university, and seeing the world, and taking up fucking jogging or whatever the kool kids are doing these days (okay, I know it’s not jogging…but I digress).
I wanted to be better the day I got sick. And the day after that. And every day for the past *8* years (oh, fuck. I haven’t written that out before. that’s scary).
When life throws you a curve ball, sometimes you have to shout “PLOT TWIST” and keep moving on. In an entirely new direction
So that’s why I’m writing again. Because I’m getting better, my body is taking it’s sweet time. It’s time for a change in perspective.
To stand on my shoulders, and look backwards, and stare through walls, and shake jars filled with wishes.
And now I have exactly 0 clues as to how I’m going to explain what has been happening. Sometimes a long intro of rambling helps but, nope. Okay, deep breath.
My dad has cancer.
I hate typing that. I hate the way those words go in the same sentence. They don’t belong. The way the present tense links my father to another terrible disease. On top of Lyme disease and other fun things like that. And because my father doesn’t do things by halves, he has two kinds of cancer that don’t really go together, like orange stripes and teal polka dots on the same bow tie [although, come to think of it, my quirky father just might think those patterns go swimmingly. you can see where I get my aesthetic from ;)]. I hate watching him suffer. The man has never taken a sick day from work in his life before this. I didn’t understand how terrible it is for my parents to watch me be so sick. I know now.
As usual, it took forever for him to be diagnosed. This seems to be a theme that’s developing. He was in hospital for 2 months, where amazing oncology nurses cared for him, and almost magically brought down the swelling in his leg, removed water from on his lungs, and removed part (all?) of the tumour on his calf. He’s home now, doing a better, and going in for round 4 of chemo later this week. There is wonderful supports in place for people who have cancer, so thankfully he’s being taken care of pretty well. Like the witch in Hansel and Gretel, I’m trying to fatten him up by cooking all sorts of yummy things – although we’re still working on the candy house. We’ve tried many gingerbread recipes, and none have yet been a satisfactory replacement for drywall ;).
I have 13% battery life here, and I know you all are going to think this is a total cop-out, but I think I’m going to need to explain about what I’ve done and where I’ve been in another post. I set out with the best of intentions to squeeze much amazingness into one post. I didn’t quite manage. Wasn’t from lack of trying. Zombies and gingerbread men and plot twists kept getting in the way…you see what I have to deal with!? C’est dans la lune!
The highlights? Singing in an amazing Young Adult choir. Going to the Hansa clinic (in Kansas!) for treatment. Doing my part to help Elizabeth May’s Lyme disease bill pass. Joining in the 25,000 Tuques project for refugees coming to Canada. Progressing to floor yoga! Cracking the perfect gluten-free vegan bread. Starting a shop for my hand-carded batts on Etsy. Knitting socks. Many socks. Visiting Finnerty Gardens in every season. Reading so many books, and trying to check out all the material at the library (I’m doing pretty well so far.). Preparing for my grade 9 piano exam, in which I will slay some Mozart, Bach and Debussy music. Connecting with amazing humans. [Whoa. This list is making me feel so grateful right now <3.]
I’ve been very exhausted lately. I know, shocking, right, but this is different. The kind of tired where breathing sometimes feels like quite enough to be doing for one day. Where your migraine-addled mind slows, and thoughts come in puffs of clouds, that vanish when you try to hard. And sometimes you say “Fuck it” and do everything even though your arms feel like they are going to fall off and you need to rest during the remains day. I cut back on some more strong pain meds, and surprise, wouldn’t you know, I’m in more pain now which is also exhausting, but the pain is lessening, for which I am so grateful.
But I’ve learned this year that I am stronger. Stronger than the things that try to weaken me. Stronger than I knew. I learned I can take a punch; a victory; a set back; courage, and get back up and do it all again.
Get knocked down 7 times, get up 8.
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