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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.

 

(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.

Deep peace of the running waves to you.

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

Body.Mind.Lyme Blog Interview!

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!

Insomnia is a Dragon.

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.