Archive of ‘sick’ category

I love you, Dad.

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.

 

Travellers by Train

mint and vanilla
Cuz eating a vegan/gf cupcake with a smile 😛

It just so happened that Amy was able to come down from Ottawa and visit for 2 days this weekend, as she never has classes on Monday. Yay! She took the train down and arrived yesterday evening. We visited a little bit and relaxed at the condo, and then Amy went to stay at Gramma’s house, just down the block! Amy and I had girl time today when we went to pick up early-birthday cupcakes at Kind Food. Yay for girl time :). It is very exciting to be sharing a birthday (almost on the right date!) with my family, because we usually live so far away that this isn’t possible. I have spend a few birthdays with Amy, but obviously I’d love to see her everyday, and on my birthday :). She’s like my big sis, and I love that! 

I feel much more like my “normal” sick self, now that we have been here a few days and the affect of the elevation of flying have worn off. I feel a bit sluggish, like I’m dragging myself along the bottom of a river with each step.

hot pink & lime green
monet’s garden

Something I am enjoying a lot of lately that doesn’t involve a lot of energy on my part is knitting. I have knit several PICC line armbands since I have been here, and they are already up on my Etsy Shop. At this rate I am going to run out of yarn before we get home! Whatever will I do? 😛


My big cuz also helped me out with a rad impromptu photo-shoot for my latest PICC line armbands!

wonder-woman! showing off the Tahitian sunset armband

Up to Batt!

My family doctor (who deals with my non-Lyme illnesses, if I ever get such a thing) suggested that because I have never had a psychological evaluation, and have been sick for so long with many neurological symptoms, that I should see a psychologist. He was very clear that he didn’t think I was crazy, just because I had Lyme disease, but anyone, especially a young person, who suffers a chronic illness probably suffers because there life has been changed so much. So bright and early this morning we went to see a psychologist downtown. The verdict: I’m officially not crazy. Yay! I suppose that just means I have a whole whack of serious neurological problems, which is not so much fun.

We went window shopping around the lower Johnson St. area, where a large portion of eco-friendly and locally owned businesses. It’s kind of uncomfortable doing yoga in lingerie with under-wire and lace (it’s fun to be girly!), so I was looking for an alternative to that. And just browsing.

After resting for awhile in the early afternoon, we headed on down to Knotty By Nature, the incredible fiber arts store in Victoria. I was looking to create a little hand-spun accessory for my lovely yoga teachers (can’t say what in case they read this!). The amazing and talented artists who own and work at KBN helped me pick about 5.5 oz of fibers that would blend well together: local wool, alpaca, and mohair, hemp, and bamboo fibers. KBN has drum carders people can use to blend the different fibers together into a batt, something easy to spin with. There are also wheel for customer use, and looms to rent or use there. It’s a pretty incredible place. This was my first art batt, and I’m really excited to start working with it. Dreamy softness, warmth, incredible caramel-y brown colors. Mum helped me turn the handle of the drum carder machine in order to blend the different textures together in order to have a more uniform yarn. I am exhausted from all this work and moving and thinking, so I am looking forward to just resting tonight.

Help Fill a Dream is a Vancouver Island organization that fills the dreams of children with life-threatening conditions, and also provides financial assistance to families with sick children. They have granted over 1,900 wishes to Island kids!! They are a fantastic group of hardworking, big-hearted people, who have helped me and my family enormously over the past few years. They are certainly a can-do organization. Recently, they had their big ‘Rink of Dreams’ fundraiser, which is a 24 hour hockey marathon! A really nice girl about my age named Rachael and I were asked to be honorary captains, to drop ceremonial puck together- how cool is that? There was a rehearsal a while ago, where I got to meet everyone, and see how things were going to go and all, and yesterday was the big finale of the fundraiser. Amazingly, a company called MacQuarie Group matched the donations, and HFAD was presented with a check for  $80,000 (with hopefully another $20,000 en route, bringing the final total to $100,000!). I have no doubt this will quickly be turned into a whole lot of wishes.

Check presentation ceremony :D.

I had no idea wheelchairs could go on the ice, but apparently it is no problem. Before I was sick, I was a pretty poor ice skater, but could manage by holding on to two people and constantly falling or nearly doing the splits. Lets leave it by saying that I lacked control, and had to run into things to stop. I’ve never played real Canadian ‘ice’ hockey, but loved field hockey at my old school, and what I lacked in skill I made up for in enthusiasm.

The whole thing was just a whole lot of fun, and exciting. I didn’t stay very long, because I was feeling so poorly, but enjoyed watching all the costumed characters unfolding the ginormous flag for the singing of ‘O Canada’. I think the people were in costumes partly because the most popular wish request is a trip to Disney Land :D. Very cute.

Darth Vader, alongside Princess Leia, Snow White and Captain Jack Sparrow.

New House!

We are in our NEW house today…its quite exciting. We stayed here last night, but most everything is still in boxes, or hasn’t arrived yet. We live in Saanich now, across from a Community Green Space, which is nice.

I’m pretty tired now, though. It feels like there is a fire in my bones, and that someone is tap-tap-taping from the inside of them. Its not been a very good week for me. I feel sick. But hopefully things are on the up-and-up.

Nancy, my auntie is here too! I’m so happy she’s here! Love you Nancy!

Walk On.

When I was young, I never considered it, but I just assumed that the world would walk on forever, and nothing would change. That I could always walk down the local streets and laugh with friends and nothing would change. I figured that there are things in life that just can’t change, because they shouldn’t. I figured that will power alone could keep change at bay.

Of course, I was young. The world walked on, but took a new path, and it takes a new route through time every day. How can you keep up if you are not abreast of these changes?

Today I feel sick sick sick. Low. I could stare across the room blankly forever, happy to just be still and not think. A few of my blood counts are low, so we are stopping the drugs for a day, and then we’ll pick them back up after I’ve been tested again. Lucky me :P.

The days pass by in mostly the same ways. We go places, and occasionally see people, but I hope we can see more. I miss everyone so much. It’s tiring doing things, but I like it better than doing nothing…

The thoughts aren’t stringing together right today, the words not flowing off my tongue. I feel lethargic and heavy. Tomorrow it will be better, it always is.

Stranger at Home

Its strange being home. Everyone asks me how my year has been and I have no answer but a generic ‘good’ and a wide, vacant smile. They say how much I must have missed the Island, and I give give a non-committal nod of the head and change the subject. It is hard, because until they mention the fact that I have been away, I feel like no time has passed at all…because now the seasons are different and I can only tell how much time has past by the fact that I have grown, and the little stickers on the back of the car. Its as though I’ve been transported to the future, and I can look at the newspaper of next year, and view the city a year ahead of schedule. If I was on more drugs, I’d think it was magic haa.

But I don’t like it. I’m so tired of this half-life; of the mind-numbing drugs and the time gaps and the even wider gaps between my old friends. I want to scream that this is enough already! I have proved that I can handle this, I have suffered and proved time and time again that I can handle this. I have been tested; haven’t I passed? Can’t I just be fixed now and go back to the way things were without many changes? Who am I screaming to…are they listening?

Where is that old life? Where does the time go? To a vacuum? Into a vault? A vault in our minds? How cruel that my own vault is empty of the present, that the time and the life are all gone. All spent. Where does the time go?

It Was the Best of Times, It Was the Worst of Times.

Its been busy around here! Haven’t written in awhile!

They upped my amount of Doxy (an antibiotic!) and its been making me feel super nauseous and foggy, which is always a drag!

Amy, my cousin, celebrated her 23rd birthday a few days ago! 23! Yikes! We went to the reptile zoo together with my dad. It was fun, but kinda creepy. There were some really pretty snakes and frogs though! Even a crocodile! Gosh!

We went out for Thai food this week (OMG! its too good to be true!) but I felt too nauseous to eat (oh…it WAS to good to be true!) which kind of put a damper on my eagerness to eat Thai. Its just a side effect from the drugs, which is super icky! One of my personal least-favorite side effects to be truthful.
)
Yesterday my big cousin Jenn came down (or up the map, not sure actually) to visit! It was so lovely to see her and we had such a good time. She is a physiotherapist so she brought me some exercises to do. We made satay chicken and peanut sauce for dinner! Way cool.

Today was real pretty out, and sorta warmish, around 20 C (68F). We went to the Zoo today and saw a bunch of cute animals (wallabies, cougars, monkeys) etc. It was a bit depressing because a lot of the animals were in really small cages! So horrid.

My PICC arm kinda hurts today. I think we are going to change the dressing soon. Super tired. Ta ta!

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