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

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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

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

The hands holding my heart.

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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.

Looking forward while reflecting back.

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.

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I love the ocean.

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. 💜

I love you, Dad.

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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.

 

Body.Mind.Lyme Blog Interview!

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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.

Oh Hai.

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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.

Fuck.

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.

Spinach Pakoras with Raita & Tamarind Sauce ~ gluten-free, vegan

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Deliciously simple appetizer (who am I kidding…I eat this as a meal!), pakoras are quick and easy to throw together with simple ingredients and minimal work, particularly if you use a food processor. It’s a very forgiving recipe, thankfully! Feel free to experiment with spices…I used ones had around but the traditional carom seeds would be a welcome addition, but something I don’t routinely have on hand. You won’t believe that this recipe is entirely free of animal products, and gluten! I am a huge fan of pakoras, but these tasted even better than the restaurant. If you only make one dipping sauce, let it be the raita I improvised. I haven’t had it in so long, because usually it’s dairy based, but my dairy-eating mum thought it was delicious, and actually we had to make more in-between pakora batches!

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I realized after chopping the onions and spinach that we didn’t have an chickpea flour, and proceeded to panic! I first tried grinding dried chickpeas in the spice grinder, which almost broke the machine (don’t try that at home!). In desperation, I ground up some orange lentils into flour, and crossed my fingers. The result was an even more flavourful pakora, with tons of protein and a beautiful orange color. I don’t think I’ll make them with besan (chickpea flour!) again, and hope to experiment with other lentils and vegetable combinations (pumpkin? Sweet potato? Green lentils? Black lentils and cauliflower? Oh my!)

Spinach Pakora Ingredients – inspired by IndianAsApplePie’s recipe
2 cups packed, chopped spinach
1 medium onion, diced (1 cup)
2-inch piece ginger, peeled and grated/minced
4-6 cloves of garlic, finely chopped
1 jalapeño or Serrano, de-seeded
1 cup orange lentil flour (instructions below, or sub chickpea flour (besan) )
1/2 teaspoon sea salt
1 teaspoon chile powder or cayenne
½ teaspoon turmeric powder
1 heaping teaspoon whole cumin seeds
1/2 teaspoon garam masala, opt.
1/2 teaspoon coriander powder
1/2 teaspoon egg replacer, opt. (Ground flax could be a good sub)
½ cup plus 1 tablespoon warm water
oil for frying (coconut oil is perfect)

1. Mix spinach, chopped onion, ginger, garlic, and jalapeño in a separate bowl. Place aside. (*labor saving tip: I use the food processor to chop all 5 ingredients, adding the spinach, last and just pulsing*)
2. Grind orange lentils in a spice or coffee grinder until a fine flour (there will be some mealy bits). Measure out a cup. Add spices and egg replacer to lentil flour.
3. Add warm water and stir until forms a thick paste. It shouldn’t be too watery.

pakora mixture, ready to be fried

pakora mixture, ready to be fried

4. Refrigerate while you make the sauces (see below). This helps them firm up before frying or baking.
5. Add 2 tablespoons of oil to a frying pan and on medium heat. Wait until the pan is nice and hot, and then drop tablespoon-sized (we like them smaller and crispy!) dollops of the pakora mixture into the pan. Let fry until they are crisp on the bottom, then flip ( you made need to add more oil ).
6. Pat dry on paper towel before serving.

Quick Raita Dipping Sauce – you’ll probably want to double this recipe, right off the bat. it’s mad tasty!!!! It’d be great to dip veggies or crackers in too.

this raita is heaven. pure heaven. i bet you no one would guess it's made with tofu...

this raita is heaven. pure heaven. i bet you no one would guess it’s made with tofu…

1 cup vegan sour cream ( recipe follows), or vegan yoghurt
4-5 green onions, chopped
4 inches of diced English cucumber ( if using another kind, dig out seeds first)
4 tablespoons chopped cilantro, or a generous handful
1/2 teaspoon cumin seeds
Fresh black pepper

1. Mix all ingredients and voila. Magic. The sauce should be chunky and very green! Add more cucumber to taste – and believe me, you’ll want to taste it!

Tofu Sour Cream
1.5 cups silken tofu, drained/crumbled (one box)
1 tablespoon lemon juice
2 teaspoon brown rice vinegar
1/2 teaspoon brown rice syrup, agave, or honey
1/2 tsp apple cider vinegar
1/4 tsp sea salt

1. Blend in food processor or feisty blender until smooth and creamy.

Tasty Tamarind Dipping Sauce
Inspired by Dassana Amit recipe for saunth chutney on VegRecipesIfIndia blog

tangy tamarind sauce

tangy tamarind sauce

1/4-1/3 cup seedless tamarind
1 and ¾ cups boiling water
½ tsp cumin seeds
1 tsp ginger powder
¼ tsp red chili powder, or cayenne
4 tablespoons coconut palm sugar
1 tsp oil, I love coconut oil
Salt, to taste
Instructions
1. Soak dried tamarind in water for 30 minutes. Break up mixture with fork. Better yet, soak overnight if you have time/patience.
2. Time to squeeze out the juice, and discard the pulp. Strain the mixture in a sieve, and press out all the liquid with a fork, or squeeze the pulp from the tamarind with your fingers (this is the fun, messy option!)
3. Set aside the tamarind liquid.
4. Heat coconut oil in pan.
5. Lower heat, and add the cumin seeds and let them crackle, for 30 seconds.
6. Add other spices. Stir. Add tamarind.
7. Cook 2-3 minutes, then add sugar.
8. Cook for 5-10 minutes, until the sauce thickens.
9. Cool and refrigerate. Can keep for several months.

Put all of these fabulous elements together and you have the plate of perfection. Happy Solstice, beautiful people.

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Withdrawal ~ A life Affirming Experience

still smiling, after 53 hours of withdrawal.

Whoa. Hold the phone. Did I just type that? A part of me – the part most closely connected to today’s symptoms of feverishness, anxiety, nausea, convulsions – just rolled it’s eyes. And last week, my title would have been radically different. Which is why I waited 3 weeks after my last dose of dilaudid to write this. That’s right. It’s been 3 weeks. *fistpump*.

I’ve been on oral hydromorphone (dilaudid), a narcotic pain killer, for several years. It works, kind of, but not without side effects (forgetting to breathe tops my list!). I used it for “break-through pain” during the day, like many people. I was on a tiny dose, and figured getting off of it would be “easy”. Oh silly, past Nicole!

First, let’s take a trip down memory lane. I’d been tapering off the dilaudid for over a year. And this year has been *brutal* in ways that, to me, have felt utterly un-Lyme-ish. I’m preeetttyyyy used to feeling like crap, and in pain everyday, 24/7, so it’s usually easy to pinpoint when something else is going on. For some reason this year a number of unusual (for me), unexplained symptoms have been cramping my style regularly. Some of these fun things include:

– hot/cold sweats

-intense abdominal pain

-involuntary muscle tensing/stretching

-shaking, chattering teeth

-mild depression (took getting off it to realize this!)

-utter exhaustion / complete insomnia [staying awake for 2-6 days at a time:(]

-complete loss of appetite

And et cetera. I know. I thought too that these problems sound like my ‘usual’ sick self, but something felt off. I felt off. I felt strange.

Naturally, these symptoms intensified the closer I got to eliminating the hydromorphone. Until sh!t really went crazy. My mother didn’t tell me I was completely off it until 2 days in. The first few days and nights were awful. Hell. Excruciating convulsions wracked my body every 5-15 seconds, making sleep out of the question. Intense nausea, head pressure, bone pain, my body jumping from hot to cold…the list goes on an on. I was completely uninterested in food or drink, and began to unwillingly loose weight, weakening my body still further. For the first few days, I mostly stayed in bed, not even knitting *gasp*, only able to get up for an hour or two at a time before by body would beg for me to return to bed. I could not believe how intense the experience was.

My amazing Mum held my hand for hours as I twisted with painful convulsions, my body freezing, stretching, pulling-apart from the inside out. She repeated the mantra, “It’s going to be okay”, and I would say, “I know”. And somehow, amazingly I did. I had this overwhelming feeling that everything was going to be fine. Better than fine. It was excruciating, challenging, utterly mind-rendingly exhausting, but I knew I was going to be just fine, in every sense of the word. I knew it was going to happen, and it would keep happening until it was over, and everything would be right again. Until my body and brain adjusted to life without Hydromorphone. I was utterly at peace with the entire experience, which struck me as a bit strange, but the calm was welcoming. For the past year, I’ve struggled returning to the place of inner calm and peace I had perpetually occupied. It came to me only fleetingly, and left me feeling anxious, agitated, and restless. And somehow, it had found me in the darkest time. I couldn’t meditate during the withdrawal experience, and oddly, relaxing and calming my brain seemed to intensify the withdrawal symptoms. So I focused mindfully on other things. A book, music. I’ve never gotten that far through my “Classical Music Playlist” (it has about 2,000 songs. don’t judge me :P!), but  listening to the soaring “Cypresses” by Dvořák, wild landscapes of Sibelius and Copeland, the unabashed liberation of Ravel’s “Miroirs“, the willful wanderings of Satie’s “Gnossienne” and many more for endless hours gave me strength and a welcome distraction. The pain could pass in swirl of musical colors, I, adrift.

As I said, I wasn’t prepared for the intensity of the experience. The sheer scale of pain and misery that your body and mind can create. The pain was so overwhelming, all-consuming, and I had to forcibly make room for living. After 12 hours of spasming pain, I’d arise, whip across my curtains, and look out at the sun. I’d made it. Another day. More hours to check off. I’d ask my mum for an update on how many hours I’d been without hydromorphone. And grin from ear to ear.

There is no respite. No break for the first 72 hours. You simply must enure. Sorrryyyyyyy. Sometimes life’s like that. But I made it. And if you are facing a similar experience, be prepared. Be ready. It freakin sucks. But you’ll survive, you’ll only feel life you’re dying.

 

That Scale from 1-10

sometimes vectors of diseases are so stinkin' cute! it made my day seeing this guy, even though I was feeling so awful.

Oh *Cringe* it’s been way too long since I’ve written. It’s hard sometimes to talk about the bad stuff when you feel like it won’t end anytime soon. I’ve been having a rough few months to put it mildly and we can’t seem to figure out what’s going on. I think I might have been in withdrawal from the pain meds we’re shuffling around, or perhaps majorly herxing from the medical cannabis I’ve started using -which is really really REALLY helping everything. Except for when I herx. But I digress. I ended up in the ER a few weeks ago with severe abdominal pain (thought my appendix burst or something!) and forgetting to breathe and a whole bunch of weird suff which was possibly from withdrawal or slight overdose, which they didn’t figure out at the ER. I wrote this poem during a full night of strange seizure, excruciating involuntary movement, and knife-like abdominal pain.

Scale from 1-10

Pain in the abdomen that feel like

a car alarm going off,

smoke detector blaring,

volcanic,

ambulance wailing,

and I,

stranded.

In my house. In my walls.

My body, weary travel companion;

Undetachable from this.

Unreachable.

onetotenonetoten

one to ten

What is your pain like on

a scale

of

one

to

ten?

But the pain dosen’t speak

It doesn’t do roll call

and count the ways it is itself.

It leads to the same conclusion:

too much.

A number a number

no waiting room number

just my identifying health care number

which for security reasons I shall not inscribe here

but

it’s 9 digits long, and roughly speaking

marks my number

on that scale

you weigh my suffering in.

Pain, unaccountable.

And I am still here in this darkening place

while ignorant armies

clash, crush, burn, stab,

in the early morning night.

Undefinable

Unattachable

Undetachable

Unreachable. Yes.

and

undefeatable.

 

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