May 2016 archive

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.

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