It was a Wednesday

It was just a Wednesday. I wanted it to be more. For the world to halt and for the flurry of crepe prep and gift wrapping to begin after I got up, to fret over the frosting texture while elbow deep in chocolate batter, choosing which place to go for our traditional birthday walk. February the 15 is a holiday at my house. It’s my fathers birthday, and it wasn’t the same without him there to celebrate. It would have been my Dad’s 70th year orbiting this Earth, and I’m sure he would have had some wry comment about him being “70 years young!”. You need to imagine him saying that with an exclamation point in his voice, one finger jabbing in the air to emphasize the point. Age was a relative thing to my father, ‘young’ truly a state of mind, and ‘old’ something that crept up on you when you let a little bit of the sparkle and wonder out of this life. And Dad clung to every speck of magic. And he taught me in every gesture, every smile and twinkle of his eye, to do the same.

My family’s birthday are magically well placed so that every 4-5 months we get a party. It’s seriously well planned, props to my ‘rents for that. But this February snuck up on me. Usually I see Valentine’s decorations and that’s my queue to begin the gift knitting but this year it was like my brain wanted to protect me from this truth. That today I’d have to celebrate without him. That today would be lonely in a way that the rest of the year couldn’t quite top. I hate these ‘firsts’.

last years birthday toque!

I missed the ritual we’d carefully crafted together for this day. Preparing food – almost more than the eating of it – is a religion in our house, but particularly between my father and I. Most people laughed and just couldn’t understand how we could literally start prepping dinner around 3 pm and still take about 4 hour to get a meal on the table. We took “slow cooking” to an impressive level. But more than our usual walk outside, the board games after dinner, the cake and candles, I miss making my dad a card. I know. I was surprised to discover how much I missed the ritual. I would spend forever making my parents handmade cards every year for their birthdays, cutting out tiny pictures, tracking down the elusive “y’s” and “p’s”, and if I could find one, an “!”, to spell ‘H-A-P-P-Y B-I-R-T-H-D-A-Y-!”, ransom-note style.

I love crafting things for people.

*Gasp*.

I know.

You’d never have guessed, right?

But there is something magical about the time you take to craft something with your own two hands for someone you love. An hour or two, or 60, if you’re crazy and decide to make your very tall father a cabled vest *insert tears and creative cuss words here*. I spend that time solely focused on the person, little snippets of memory floating through my mind as I flip through magazines to find the perfect pictures to arrange. Something they’d love, something that reminds me of our relationship, or the strange wonderful beauty of nature, or completely random shit. I have this penchant for cutting out really dainty chandeliers, snipping around the curve of each bulb, making the lines as close to the image as I can. Why? I have zero clue, I just like them, kay? I’m like the paper-chandelier-cutting monk.

And then I’d write in them, the lines of text running on an angle across the page, because apparently I am still in grade school and never mastered the art of writing straight without guiding blue lines. I liked to keep my Dad’s cards eccentric and a kind of word collage of emotions. It was a tiny conversation, a snapshot of love, that rested on the fridge or the bookshelf until next years card usurped it.

But today was different. Today was quiet. Today I spent trying not to become a curled mass of shadow and brokenness in the corner. To now fold in on myself like human origami of grief. I photographer eleventy billion buttons for my shop, a task so mundane and menial it felt almost sacrilegious to practice today. But it was a good distraction. Mama and I went out for dinner at one of our favourite places, Bin 4, and enjoyed a glass of red wine together. It’s the first time in 8 years I’ve been able to drink without having pretty serious med interactions, and it was magical and delicious. I was all eager to prove I was over 19 and can you believe it I WASN’T EVEN CARDED. Like, why else do you carry I.D. if not to whip it out to random waiters and bartenders to inform them that, yes, I am a grownup, and here a picture of me looking my absolute best, photo cred to the talent at the DMV? In my waitresses’ defence, I did ask what blend the wine was, and for a taste, which I proceed to sample correctly the way my father taught me at the ripe old age of 4. So I guess I came across as classy and mature AF, which I suppose is a little win. I’ll take it.

And then we ate a lot of dessert. All the desserts. Which was awesome.

I’m going to break this stream of conscious with this complete non sequitur, to humbly brag that I have the best friends on the planet. Sorry, this is 100% verifiable, but don’t ask them yourselves, as they are so freakin’ humble, I have to do the bragging for them.

My bestie Morri knew oday might be a hard day for me. It kind of snuck up on me, and we were talking about that, and she was joking around with me, cheering me up and distracting me in that way only amazing friends can. And somehow the conversation turned jokingly to delivery of emergency ice cream. And I jokingly mentioned my favourite flavour was Salted Carmel. And my friend is one of those rare people who doesn’t really love ice cream, but I love her anyways ;).

Yeah. So this afternoon I was, and I quote, like, “whaaaaat?”, when a pint of Luna & Larry’s Salted Carmel Coconut Ice Cream was delivered. You need to imagine me saying it in a very high pitch voice with lots of excitement and grabby hands and smiles from ear to ear. I wanted to eat that goddamn pint for breakfast. Looking back, why didn’t I do that?!

“Whaaaaat?”, she exclaimed!

And I felt so loved, and so fundamentally understood, it was magical. And I made it through this day. With love from the people around me, which is fierce and wild and strange and full of magic too. That love, from my father, from my tribe, will always make the day brighter <3.

 

An Ode to Small Moments

I miss the small things I loved to mock-complain about. The tiny things I’d lovingly tease my dad about. My father would often ask “can’t you just pull it down from the clouds?” when he needed a file from his own computer, frequently came to me in panic telling me he “broke the internet” (no nude selfies required 😉 ), or that his email or Safari had magically “disappeared”. Pops was an adorable tech dinosaur but I miss fielding the strangest questions from him about simple things I took for granted. Like how to share a link, or put an application back in your dock after it ‘mysteriously’ vanish, or search for something on Google like a boss. It’d try to explain to Dad that most people don’t write an entire email in the subject line, or that it was probably a spam request, and remind him I wasn’t a magical wizard of computers ;). And vocab. Bless my father, but he had some unique words to describe things on computers. But ask him about viticulture and bizarre compound words of intense specificity would pour from his mouth. Words that would floor me and have me asking “could you spell that” and “is that from the Italian” like a kid on a spelling bee. Let’s just say bizarre wine-related words sometimes cropped up when we played Scrabble, and I lost many a challenge on words that sounded like total BS but actually meant something obscure like the correct amount of clay to have in soil or whatnot.
I have zero clue how to drive a stick shift car. I never had to bring ice in from the ice man to put in the ice box to keep the ice cream cold. I couldn’t make something out of wood or hang a picture with a level. I can barely set up an umbrella, let alone canopy awnings.
                                                                                                                                   Dad did.
It’s weirdly heartbreaking wiping my old computer. It’s the last time my whole family will have accounts on one Macbook, even if their accounts were used mostly when we traveled. My dad has been a roaring lion, my mother flippers, and me that fucking dandelion for well over a decade (because we’re classic AF), our symbols picked when we bought our first family laptop years ago and migrated through the generations of computers since.

classical iconography

It’s not about the accounts. It’s not about needing to find a new person to ask me bizarre computer-related questions. It’s that these tiny moments I counted on my whole life have ceased. It’s about the changes that happen in life, large and minuscule, when someone died. I’ve found it’s the most random things, at unexpected times, that get me, and it feels like I’ll never break out from the waves of pain and memory crashing above me, barely allowing room for breaths.
I miss so many things about Dad. Those ordinary little moments of laughter. I miss that weirdness. I miss his unique brand of weird. I think sometimes the joke was on me…he’d use one of his made-up phrases with a twinkle in his eye, an expressive eyebrow quirked every so slightly, knowing it would make me laugh. He had a knack for knowing when I needed a laugh, without me realizing.
My father had a way of lifting simple moments out of the realm ordinary. I’m so grateful I learned by example how to “fill the unforgiving minute with sixty seconds worth of distance run” (Kipling).
<3

Both Sides Now

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.

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.

opening remarks from Mr. Normandeau

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:

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.

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

(Whoa. Did you feel that?) : The Paradigm Shift

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.

Beginning of the National Lyme Disease Framework Conference

Excited? A little ;).

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.

i carry your heart with me(i carry it in my heart)

I’ve been trying to find the right words all week. I’ve looked under stones and between onion-skin pages, daffodils and piano keys, and realized they could not exist. There will never be words tailor-made for this experience. Language, my favorite art form, has it’s limitations.
My father passed away in the quiet blue hours of Tuesday morning. It still feels impossible, a thing that could not be. How can you go from speaking in the vibrant, immediate, present tense to speaking about such a human in the past tenses, in all their complexity? In a way though, the hardest part was the last 10 days of my fathers life, when his body was waiting to follow his soul. The last time he spoke to me, felt like the day he left the Earth. I feel that Mum and I are at peace, comforted in the knowledge that he is no longer suffering, something he was very clear he did not want.
Dave lived an extraordinary live filled with joy in the ordinary moments, something I aspire to always.  His passion for wine and good food took him to many corners of the world. My father was passionate, eccentric, adventuresome and always game (particularly if that game was Scrabble!) for anything. He never treated me as a child, but always as my own person, and wondered at this strange, tiny person that was connected to him. He loved me deeply, unconditionally, and made sure to take every opportunity to tell me.

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.

“Nicole”, he’d say, “Nicole, I have something very important I need to tell you”. His tone would suggest he had just discovered the secret to multi-dimensional travel or the final numbers of Pi.
I’d respond with a querying, “Yes…?”.
He’d make sure I’d stopped whatever I was doing, burning onions be damned, and look me in the eye, eyebrows arched in that impressive yet ridiculous way only Dad could pull off. He’d say, “I love you.”, as if it was the most important thing in the universe.
I’d quirk my own brow – not quite as sharply, but still, I have inherited that skill. I’d say “I love you, too”, letting out only a tiny hint of the required teenage exasperation at familial affection come into my voice (Yay! I’m 23 now and have [almost-totally] outgrown that!), and ask “Was that all?”.
And he’d reply with a simple “yes”, and a simple, knowing smile. <3

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 bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart
i carry your heart(i carry it in my heart)
~ e.e. cummings