Archive of ‘changes’ category

The hands holding my heart.

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.

IMG_4962-1

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. 💜

Oodles of fun

Two fellow spinners from The Linden Singers, Judy and Tegan, came over this afternoon for a wonderful adventure in spinning! I have never had the opportunity to spin with other spinners, or fellows to gush over fibre with, and wow was I missing out. This craft is individual, but meant for sharing and giving and exploring. It’s the most enriching part of the experience! I learned so much in an afternoon, and got to try spinning on Tegans’ teensy ‘Ladybug’ wheel, which official makes the Cowichan Spinner  the ‘elephant’ wheel (voluptuous and graceful!). Judy gave me a bunch of fantastic local fibers to play with

a tussah silk mustachio (a belated tribute to Movember perhaps!)

I haven’t felt inclined to write much lately. The words usually pour from my fingers, they hit the keys running. My mind disengages and I turn on my heart to find what I want to say. But I suppose I am just a little bit tired of being optimistic, tired of hoping, and marking the minute changes in my health on a weekly basis, sick of still being sick.

I try to remind myself that a silk worm hatches into a moth. Forming a chrysalis is hard work, and very important if a silkworm is ever going to grow up. They spin tiny threads around themselves into a safe haven, and once they are sealed up in this sleeping bag of their own design, they wait. Patiently. Quietly. Knowing that something important will happen after. Their whole being undergoes a great transformation, and only when they are ready do they break free of their cocoon, and dry their wet wings in the sun. Then they are free to fly and explore and do all the complicated moth-things that we are only beginning to understand.

When all of ‘this’ is all finished, my life will ‘move on’ to some place. I supposed it will take awhile for me to understand what ‘this’ was all about, and how it will affect my life (although I am beginning to see how). In the meantime, I need to be patient for wings take a lot of energy to grow.

pupa |ˈpyoōpə|
noun ( pl. -pae |-ˌpē; -ˌpī|)
an insect in its inactive immature form between larva and adult, e.g., a chrysalis.

Reflections in a looking-glass pool

Underwater life animated on a historic building

I thought that the days of summer were truly over, but today the sky was an exhilarating riot of vivid blues, stormy grays and white. A mix of sun and clouds, with a touch of rain, and the occasional brilliant-eye-squinting ray of sunshine. Dad and I went down to the Inner Harbour, walking along one of the few paved paths in Victoria that is in a moderately tranquil location.

Regal Parliament, resting on borrowed lands

We walked along the smooth path, taking in the sights like any good tourist. It is noisy in the Inner Harbour, with the sea planes taking off towards the distant mountain, motor boats tootling around, people laughing and skateboarding, biking, dogs.

no school like zee old school

The one thing that you must listen hard to find, to separate it from the roars of city life, is the sound of the ocean, persistently lapping against the raised concrete path. I wonder what this place looked like before the shoreline was smoothed out and raised up. Were there beaches paved over, and did they use the smooth pebbles littering those ancient beaches to decorate the gray cement? A small piece of the bay is still intact, where you can see the remnants of crystal pools of green water, which carve holes in the rock-face. There are no big waves that rock into the Inner harbour any more. Not since the extension and creation of the breakwater, a few kilometers away. The water feels almost stagnant, until some boat or plane disturbs its’ surface. Just remember that this water is also full of raw sewage, one of Victoria’s very dirty secrets. Yes, that’s right, in the historic capital of this great province, our toilets flush right into the once pristine coastal waters. Pollutants don’t belong here. Not anywhere.

looking-glass pool
We strolled across the Blue Bridge, a first for me. I’ve never crossed from Esquimault to Victoria on foot or wheels. From there, Solstice Cafe, a haven of organic and homemade (many vegan!) delights, is just a few stoplights and a hill away. Steaming cups of rich cocoa, and a granola bar. Isn’t that the definition of culinary heaven? 
history unknown
I have always been fascinated by this building front on Pandora. Only the historic front remains, an eerie skeleton, a face with no body, a lid without a box. Ironically someone painted a few blue pacman on the front.  In the good old days of my freedom with strong legs and a healthy sense of adventure and liberty (always willingly accepting serendipitous situations as they arrive), I used to think to myself that the bodiless building would make an incredible picture, or a sweet backdrop for a photo-shoot. Finally, camera in hand and blue sky to boot, I captured the haunting beauty of the place on film a plastic memory card. 
I was so exhausted when we came home, although I am trying not to show it. We started my IV antibiotics a few days ago, after almost half a year without them. The medicine is caustic, and burns my heart and veins as it enters my blood stream. I feel weighed down with sickness, as though my bones are suddenly filled with lead instead of 900 mg Clindamycin.
When in sickness or pain, try chanelling your frusteration into a creative outlet. 
Don’t speak the anger in your mind and body, but instead try to look at the flipside, turn everything terrible into something good. 
An example? Today I am really suffering, and I feel like crying with the pain of the medicine going into my heart and neck. 
But someday, when I’m a doctor, and I decide to put a patient on a drug with a biting, bitter, derisive and acerbic personality, I will be able to understand their suffering. 
I am being given the power to heal, through the knowledge of suffering I am receiving. 
A further plus side is my extension tubing is 14 inches long, leaving me plenty of room to knit!
Once you start moving in a postive frame of mind, everything become lighter and warmer in my mind. I hope it can do the same for you.
I channeled my pain in sewing this afternoon. I have many incredible animal-print tees from the Sierra Club, that Dad used to bring home for me, some of which I have had since kindergarten. The sky blue and navy octopus shirt, which is too small for me and a bit faded, has just been recycled into a trendy skirt. Cut off the sleeves and neck, added a bit of denim on the sides from a pair of pants I cut off into shorts, and created a waist band from a faded black stretch shirt. I will post pictures when I have it fitted and on ma body! Should be pretty sweet once it’s done…and all recycled…how cool is that? 
<3

Tea for two, with a side of Nostalgic Pie

My wonderful friend Jessica, is back in town, after much musical-globe-trotting, and schooling abroad. Jess is a bright light, quirky, bubbly and a very talented violist and singer. She is always so busy, that this peaceful summer lull makes quite a welcome change.  It was so nice to be able to call her up yesterday and make plans to chill today! That has never happened, and I’ve known her since we were in grade 5…gosh…has it really been 9 years already? I’m kind of teasing her here, but its usually really hard to get together with her outside of school…its kind of a joke among our friends.

We met at the Solstice Cafe for tea, a cafe that hearkens back to Paris and Vienna’s artistic cafe’s, that I’ve only read about in novels. Organic, local, fair-trade, with lots of vegan baking. Paradise, essentially.

Maybe its because Jess and I are around the same age, but when we’re together, it still feels like we’re little girls, a giggly duo who can literally talk forever. When you grow up with some one, sometimes you can’t appreciate how much they have matured, blossomed, until you’ve been away from them for awhile. I’m not talking about the ‘oh-I-can-see-you-as-an-accountant-already’ kind of grown-up, nothing bad or dull like that. 🙂

I kind of had this idyllic notion, that when it was time for people to leave to go to school, no one would really go far, Vancouver at the worst, and we’d all stay as close and our lives as interconnected as before. Most of my good friends I’ve known since Middle School, and that circle hasn’t changed very much, although we have all grown into very different people, our personalities complementing each other in our quirky way, friendships that are as well worn and treasured as a pair of favorite dancing shoes. I try to write like I am blissfully unconscious of my audience (hello? are you out there 😛 ), and so its ‘just the facts’. I know that its 100% non-fiction when I write that I have the most cherished friends imaginable; I am truly blessed. Pardon me as I overflow with nostalgia for the old days, of playing Cops and Robbers in the rain, our kilts swishing, ridiculous nicknames, playing the ‘Blue’ game on the swings, the Pickle Trees, and gossiping in Windy House…

Oft, in the stilly night,
  Ere slumber’s chain has bound me,
Fond Memory brings the light
  Of other days around me …

 (Thomas Moore)

It is kind of exhausting, talking for so long, but I wouldn’t trade our catch-up for anything. I haven’t been feeling super-dee-duper lately…always feeling like I could have used another decade of sleep, not wanting to move or think too much. Anything but knitting, or practicing my Debussy repertoire (recital on Monday!) seems too overwhelming.

Try on Some New Genes

Today was very different and very un-Lyme related! Oh boy!

We went to VGH to the Genetics department. I have known i have neurofibromatosis type 1 (NF for short), which is a genetic disorder and in my case a mutation since i was 2 or so. It doesn’t really bother me, but possibly might be complicating the Lyme treatment.
They just asked a lot of questions and then poked me a little bit. About two-and-a-half-hour appointment, which is quite long for a doctor. The doctor, a lady was so nice, and very thorough. All and all not too bad of a day!

I still feel very sick. Somehow, if I had thought about it a year ago, I would have expected me to be much further along than I am. I would have expected to be practically all better, at the very least in less pain or walking or remembering things like old times. I couldn’t have guessed how this year would have turned out.
I guess planning things is a bit of a superficial activity, because no matter how hard we try, we cannot prepare for the unexpected; we cannot outsmart change. I suppose I figured I could.

Who Am I?

Its been busy, not in a rush-around-no-time-for-a-break, but busy for someone who’s done nothing for a good time longer than she cares to remember! I love it though, seeing everyone.

We go to the mall sometimes with friends…just look at stuff, laugh, be girls. We try on makeup in the department stores, and spray perfume at the Body Shop, but it doesn’t feel like it used to, hanging out.
I went to the park with one of my bestest friendS, and we took pictures and just chilled. It was so sunny, and we took beautiful pictures of Beacon Hill park, especially random ducks, and water scenes.
Went to a movie one night with a group of people, it was nice only I sat through the whole two and a half hours wondering:
A. where I was
B. who I was with
C. when can I get some more water or snacks!
D. where am I?
E. who is THAT actor?

and probably repeating those questions in my head over and over again. Very tedious.
I like going for tea, and just relaxing with some good quality caffine to keep me going. Or chocolate…that always helps.
They all seem so different. Their faces look older, they’re taller, bolder, louder than I remember. But then I remember they ARE older, which is very strange.

I’m different too. I guess through them, noticing how they’ve changed, I can appreciate how I am different too. I guess I’m too sick to see that I’m growing up too. I wish I didn’t have to miss the “best years of my life”, yet still live through them, if that makes sense. I guess I just want my old life back.

Who am I? Sometimes I wonder if I still know.

Somedays

Its cold here today ,but clear, and if you didn’t look at a calendar, you might just think it spring, not summer. But of course I looked at a calendar, just to make sure my guess was correct. Sometimes I worry that I won’t realize time has passed once summer comes again. How will I know that I’ve been away so long? How will I begin to guess that?

Its crazy how different my days can be. Some days I can be sitting on the porch, laughing and drinking tea and a stranger wouldn’t know I was sick. Or some days I can be sitting in a cafe, in my wheelchair, but still, you’d be hard pressed to know what was wrong with me. Some days I can think real clear and some days its hard to talk. Sometimes I the day ends with me lying on the floor of the bathroom, knocked cold from falling and hitting the counter. Days can end with confusion and tears or laughter and pensive thinking. How is it fair that the days can end up so different? I’d rather take an average of the good days and the bad ones and then have okay days for awhile. Its just worse to have something and loose it, you know? But I suppose that one could argue that it is better to live for a day, than never live at all. Its hard to feel so erratically different from one day to the next. Its aggravating, let me tell you.

At least I’m at the lake though. I think there must be something to the logic that when you are surrounded by something so beautiful and clean and fresh, some of that goodness has gotta rub of eventually.

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