When you hear the media speak about "protecting the vulnerable" it applies to me. I was asked to speak at the Desmoid Tumour Foundation of Canada's annual event, but due to COVID-19, we've had to cancel it. This event is organized by a small, local charity that is operated by volunteers. In three short years, it has raised over $200,000 towards tumour research initiatives. I'm directly impacted by this charity, and was really looking forward to speaking about my experiences and connecting with the community. But, here we are. I hope these words will help raise some awareness, draw connections to this current crisis and serve as a reminder that we really are in this together. I'm thinking of all my friends who are undergoing chemo, and everyone who has found themself living in a marginalized group. We are all in this together.
chemo versus covid
It’s hard to process all that’s happening in our world, but something feels oddly familiar to me.
New data emerges each day, opinions vary, research and trials continue, government decisions are debated, every country has their own approach, hospitals are overwhelmed, panic leads to desperation, and everyone is feeling anxious about the uncertainty.
This moment feels a lot like receiving my diagnosis and learning that I would need to undergo radiation and chemo for an unknown period of time. And here’s the thing: you’re not given a choice to decide when your life will be turned upside down. A potentially lethal virus, like a tumour, spreads without your consent.
Unexpectedly, every single aspect of my life was disrupted because of a health crisis. My job, home, personal life, finances and future plans suddenly changed in ways I could’ve never imagined and it's taken me a long time to process my diagnosis. I feel vulnerable. I still wonder about all my plans - all the things I think I want for myself. And eight years later, while I continue to wait for a cure, the fear feels heavier in this current crisis.
So here we are, collectively wondering the same questions in a different context. When will things go back to normal?
And what if, like me, nothing ever really feels normal again?
What if Covid, like cancer, is a chapter in our books that we don't want to re-read. What if the clinical trials don’t work? What if we go into "remission" and it returns? These are questions I ask myself daily.
I’m part of the vulnerable group. I’m one of those people they talk about in the news who could get very sick if I catch this virus. And like you, I still have a lot of things that I want to do with my precious life. I need to make more art, and learn to bake sour dough, return to my classroom, visit Tofino with my loved ones, build a family of my own and watch the delicate blossoms on my citrus tree slowly turn into perfect lemons.
You’re not stuck at home. You’re safe at home. How lucky are we (at least in these parts of the world) to live in safe, warm homes with clean, running water, power and reliable wifi. That’s not a punishment, that’s a privilege. So while this weird time really sucks, we'll get through it.
Please stay home and be grateful that healthcare workers and essential service workers are out there doing their important work, so that less lives are lost and we have the services we need.
In the world of cancer care, there are a lot of unknowns. It’s hard to be patient and blindly trust the opinions of others. But this isn’t a subjective debate. Unlike cancer, COVID-19 can be contained and controlled by us. Or maybe our world will be better once this challenge is behind us.
I’ve been conditioning myself for years, now distanced from the previous parts of my life - life before chemo. I have a mantra that I repeat everyday: when things don’t go according to plan, just make new plans. Take what has been offered to you, and in spite of the uncertainty, turn it into something that you’re proud of.
Going through cancer treatments, or any kind of treatment for something that is truly out of your control, is awful. Fortunately, we have some control in this situation and all it requires is a little mindfulness and patience. So, please stay home and consider the people in your community who are vulnerable and need your help. You never know what help you might need in your own future.
This journal was submitted anonymously. Im so happy to share these inspiring words of hope by a loving mom who son was diagnosed with leukaemia in 2016. Three months after he turned two years old. He’s now five, started senior kindergarten last year and completed his last dose of chemo on February 5th. Children are resilient. Unaware of the politics and challenges of healthcare, they innocently adapt. I think this family is amazing for persevering through a challenge like this while holding onto each other tightly and never losing hope.
January 2, 2020
I went to bed last night feeling nothing. Nothing was different. It was just another appointment. Sure, one month closer to the end, but when you’ve been at it for 3+ years, and it has amounted to 2/3 of your parenting experience, you accept everything as part of life. Part of your routine. For better or worse, I had come to accept that this was just the way things were. Our reality. Our life. While my mind knew that we were nearing the end, I couldn’t fully accept it. It didn’t seem possible that this would be over soon.
When I was handed the appointment card and our NP explained what our end date was I didn’t believe it. I thought I was missing something. 5 more weeks and there would be no more chemo for his tiny body. What was the catch? Who’s going to hand me the “But...”? No one. That’s it. It will end. And the timeline is tangible. The relief and tears I let out were a small fraction of the emotion I was feeling. He didn’t understand why Mummy was crying. A moment ago wasn’t everyone just getting excited and talking about high fives? I told him I was happy. They were tears because I was excited and so relieved. He still didn’t quite get it. And all he wanted to do was hug me and comfort me. He stood up and sat back down. Not until his nurse told him it was ok to give Mummy a hug, and I opened up my arms, did he come to me - still very unsure. He stroked my arm and said “it’s ok Mummy”. I told him I was so proud of him. So proud of how strong he is.
A day - actually a year - that started out hopeless had turned around with one piece of paper. And I suddenly had the energy to make it to the finish line with my little man on my shoulders. There is an end. There is something more after this.
No, not today. Today the fears and the doubts and worries about “after treatment” can fuck right off. Today I will recharge and celebrate this tiny, infinitely strong human. I will feed off the knowledge that we have been through hell and made it this far. We WILL get to the end. We will do it together. The way we started this journey.
The Buts can knock at the door tomorrow.
reena & ashley : part one
I have always been shy when it comes to social media. I was the last of my friends to join Facebook and don't have anything posted. I cautiously joined Instagram, making sure everything was set to private. But when I began kisii, I knew I needed to push myself to be more open, to share my work and my words since I was trying to do something that required support - fundraising. At first, I didn't think anyone would really be interested, nor did I know anyone else who was using craft to explore healing. Desmoid tumours are rare enough as it is, so I never expected to find an International community of amazing people who were all going through the exact same experience as me! And I found them on instagram, starting with Ashley.
Ashley is one of those special people who manages to share her experiences in the most endearing way, by stating the how's and what's and even asks the why's, so that we all are left with something to think about. She's genuine, spiritual, kind, hilarious, extremely strong, thoughtful and has become a really good friend. She lives in sunny, Southern Florida and is a Licensed Clinical Social Worker passionate about helping people rebuild after trauma. She's taught me so much and I'm really lucky to have her in my life.
I had the honour of asking her a few questions about her journey with cancer.
Ashley and her beautiful little Bo
1. I'm going to jump right into it. Beyond the five people I met during chemo, I didn't know anyone else with my condition. Even trying to google the diagnosis came up with very few results. Thanks to Instagram, I eventually discovered you! I felt so comforted knowing you were asking the same questions and I was also really inspired by your openness to discuss your experiences. What made you start chemo diaries?
My Chemo Diaries began as a personal journal when starting my second round of chemo. During the first two years of my diagnosis, I didn’t document a single thing. I was in shock, and chemo was a memory I wanted to forget. Sadly, when preparing for my second round of chemo, I had nothing to look back on to remind me of the experience. So, I began my chemo diaries as a legacy piece for myself.
Ashley's first journal, every appointment documented by her Mom
2. Identity for me was/is something I struggle with. Suddenly (with only good intentions), you're associated with this "thing". It wasn't a part of your life and now it's so very present. It's hard to understand if you haven't been through it, but is affects all your actions and decisions in life. Accepting that you have/had "an illness" takes time to process. How has this whole "thing" impacted your identity? I know you're stronger, and we're all continually growing regardless of our circumstances, but who is Ashley today compared to who she used to be?
This is a very difficult question! First, how did this impact my identity. My sense and view of myself has been on a rollercoaster for 5 years. I ruminate constantly on different phrases. First, acceptance of my condition caused me to identify as “sick”. But being a desmoid patient and having a “not-cancer, cancer” I then struggled with “I’m sick, but not too sick”. This led to a deep desire to not act victimized, which caused me to identify as an “overcomer”. But, you know, chemo makes you tired, so I then began to identify as “weak”. Then, you find out your tumor is stable, and you’re no longer “sick”. The hardest identity shift has been from “sick” to “well”. - Second- who is Ashley today? Honestly, I’m a recovering mess. More than anything, cancer forces you to take a real look at yourself and you’re character. It forces you to answer the question, “What am I made of?” I’ve spent years wrestling with the “Why’s” of my diagnosis. I’ve distracted myself, I’ve numbed myself, I’ve lost myself. Yes, I’m stronger, today. Yes, I’m growing. But more than anything, I think I’m still rebuilding. I’m striving to rebuild as an authentic, grateful, and respectable woman who always makes loving people her first priority. I can’t say cancer “took” those qualities from me. Cancer didn’t take anything from me. All cancer did was expose qualities in myself that I needed to confront. So that’s what I’ve been trying to do.
So much strength!
3. We need to celebrate the fact that you're in "remission". I don't even know if that's the right or appropriate word. What does remission mean to you? How have you learned to balance "regular life"
Ah! Remission is a hard word. It’s actually a word I try to stay away from. While I’ve been chemo-free for a year, my reality is that my tumor is incurable. The idea of remission feels dangerous, because I feel I need to always be prepared for my next round of chemo. “Regular Life”- It’s been a year, and I’m not sure how to define “regular life”. My life is no longer regular. I think my current lesson is to recognize when I’m allowing my diagnosis to hold me back, and challenging my excuses and fears.
Ashley with her parents, after she found out that she was able to have her port removed.
4. I think we're in an important time right now where people are starting to talk about the need for research (specifically for orphan diseases). As far as I know, the current best option is a renal cancer drug that is still in a trial phase. I feel something between hopeful and frustratated when I think of how far we've come in ten years. What would you like to see in terms of options for us Desmoid patients?
I am very fortunate that chemo has stabilized my desmoid- but I know several people who have suffered greatly from this diagnosis. There are 2 things I’d like to see.
1. Doctor education. It’s very scary to have an oncologist walk in with a research
article in hand, and say “I’ve never heard of what you have, but this article says we should do x”. (True story)
2. There are so many different opinions on the best way to treat a desmoid - surgery/no surgery; chemo or radiation; HIFU or Cryoblation. Today? The “best” option is “wait and see”. I would like to see a standard protocol for how to approach treatment. Obviously different people respond to different treatments, but there seems to be no standard.
(no caption needed).
5. Aside from the chemo, what has helped you heal?
Chemo helped me heal physically. Emotionally, the main thing that has helped is time. I wish there was a better answer than this- one that allows us to take action- but time is it.
6. The reality is that chemo attacks both the healthy and unhealthy cells in our body, which impacts everything else - organ function, digestion, immune and lymphatic system (to name a few) along with increased levels of stress. One thing I've learned is that my body is unique. It doesn't respond to things the same way as the person next to me, whether it's a relative or another chemo patient. Genetically there are some things we are predisposed to, but still, my environment, mental and emotional stress, diet, lifestyle and medications are unique. Through all of that, I'm learning how to better take care of my body. What have you learned about your body through this experience?
Oh girl. This has been the hardest struggle for me. My body is completely different after chemo, and I haven’t quite achieved the mindset of “loving” my body for how hard it fought. But I have learned a lot. Our bodies are resilient. Our bodies want to heal. For myself, my body holds a lot of trauma, and I’ve actively worked to heal through therapy, EMDR, and yoga. I’ve also had to learn how to read even the smallest cues - for example - the smallest amount of salt will cause my leg to swell to a point of inhibiting mobility. Cashews will now cause an allergic reaction similar to my reaction to chemo. Etc etc.
7. I've read that naming something helps you understand it. In Canada, Desmoids are not yet considered "cancer" although they are categorized as sarcomas. In the States, the condition is viewed differently by the world of cancer care through conferences, other patients and even oncologists. I'm personally very interested in the language used around cancer in general. What do you think of the word "benign".
The inherent definition of benign vs. malignant doesn’t bother me- rather, it’s the value people ascribe to these words that become hurtful. People view benign as less important and less serious. This creates the perception that desmoid patients should be “thankful” and if you aren’t- if you’re affected- then you are being “dramatic” or being a “victim”. - Personally, I call my desmoid “cancer” - not because I want cancer - but because it’s the only way people understand the seriousness of my condition. My desmoid is locally very aggressive, and if not treated like cancer, can be life or leg threatening. Thank you to the ACS and WHO for including us in the “cancer” category.
Ashley will be hosting a workshop at this year's Cancer Con Conference in Seattle
8. You recently started a new job! In fact, you just finished your training! Yay! We've discussed the ups and downs of having to "start again". It's an interesting experience when you have an invisible disability and a major health history. Sometimes there's even discrimination in hiring practices for people with chronic illness. How does it feel to step forward into a new job? What unique challenges are you faced with?
Scary! I’m stepping into a new industry, and prior to starting this job, my close friend advised me to cover my port scar and never mention cancer. If I did, she assured me I’d be the first person fired if the company falls on tough times. In the US, we are required to acknowledge if we’ve had a previous cancer diagnosis, because we are considered a “protected class”. Girl! That form makes me sweat! That’s the time I choose to say a desmoid is “not cancer” - because I fear the potential repercussions. But as a side note, I’ve only had extremely positive experiences when it comes to work and cancer.
9. Speaking of employers, should we rant about the cost of cancer treatment? Do you think people need to hear us complain about how much it costs to have chemo? I'm going for it. I'm a teacher in a first world country with "free healthcare" and an excellent insurance plan. However, my oral chemo wasn't approved for coverage. It costs $7,000/month for this trial drug. If you have a mortgage, student debt, reside in an expensive city, it can be difficult to make ends meet. Fortunately for me, I was approved for a compassionate drug program through my hospital, and my chemo is free. But I've had to learn a lot of tough lessons along the way (for example: nobody told me that I would spend close to $5000 in hospital parking over the course of ten years). When a young adult is diagnosed, how important do you think it is to inform them of the anticipated costs of this new financial reality?
I wish I had been offered a financial advisor - even if it was just one meeting! Cancer is very expensive, but I must admit, I have been fortunate in this area. My last chemo drug was $16,000/mo and I was given the dosages for free because of a scholarship. My health insurance covered all expenses except a $2,400 deductible/yr and a $700/yr premium. Sure, that’s $3,000/yr on healthcare- but I am ok paying my doctors who have treated me well.
Ashley pondering about medical bills, credit scores and the time it takes to wait on hold.
10. We have a shared love of the ocean. My special place is the rugged Pacific Coast in Tofino, British Columbia. I always feel more calm when I'm near the water. You recently decided to learn to sail! I'm a big advocate for learning new things at any stage of life. What does being near the ocean bring into your life?
I don't know what it is specifically! The ocean is my healing place - it brings catharsis. I may have to think about this more :)
11. Now that you've lived through it, what advice would you give your younger self, when you were first diagnosed, to help move forward?
One of my doctors shared something with me during my second chemo appointment in 2015. Her words were so timely and I have repeated them to myself often over the years. She said, “Ashley, I know this is hard and it seems so big, but in the story of your life, this is just a small blip on the screen.” - in other words, “Keep hope. Things will get better.” I’d also tell myself “You can do hard things.” - “Be kind to yourself, there is no ‘right’ way to handle cancer” - “Let the tears flow, it’s ok to grieve.”
12. Let's end on a hopeful note. You have been an inspiration and source of strength for me. I see you trying hard and it lifts my spirits. Where do you seek inspiration from?
I’m motivated by two things: life and people. We only have one life, and I want an amazing one - jam-packed with meaningful experiences and adventures. Even though cancer is brutal, it is still that - a meaningful experience and an adventure. I’m also highly motivated by people. I want everyone to love their one life, and if there is anything I can do to inspire hope or help people get there, that is all I want to do.
13. Do you have any questions for me?
These were amazing, thoughtful, and relevant questions. What led you to these specific ones?
As you so eloquently said, this is part of our adventure and I'm searching for answers to questions that sometimes keep me up at night. To say them outloud and ask someone who has been down the same road is really helpful. It's an isolating experience at times, but it's been positive and therapeutic to connect with you and other patients who have now become friends. But we have lots of work to do, there's a lot more to our story that needs to be shared, so that's what I'm working towards with kisii and now with The Cactus Flower Journals - a space for us to think and talk about these things. I feel like it's our duty to shed light on this and help raise awareness through our shared experiences. Hopefully we can help others going through similar challenges, clarify some of the stigmas, advocate for clear professional standards, raise awareness by rethinking the language used in the medical world (and beyond) that relates to us, connect organizations and people to ultimately help support other patients. The Desmoid Foundation of Canada has helped me tremendously, so I try to give back to them and my hospital, Princess Margaret Cancer Centre. I have so many more ideas to explore and questions to ask, so get ready for part two! :)
Thank you for taking the time to answer all these questions, Ashley!
What started out as 7 questions almost doubled! I'm honoured to share them here, especially on #WorldCancerDay. Thanks again! Love you!
If you'd like to follow along on Ashley's adventures you can find her here:
reen & jess : part one
You know that saying, “you meet everyone for a reason”? Well, it turns out to be true in this case. I met Jess 14 years ago and I’ve been learning from her ever since. She's crazy talented with a fierce determination to create. She was the first person I knew who was selling art on Etsy, and convinced me to start my own shop too. She was the first young woman I knew who had started her own creative business and blog and even had her own studio. We instantly clicked and a friendship was born. Since then, I’ve been fortunate to witness the transformation of her work as a photographer, as well as watch her develop ideas into bigger projects including two more businesses, Golden Blue where she sells her Birds Oracle Deck along with other beautiful treasures and Bartender Atlas that she owns and manages with her equally awesome husband, Josh. As if that wasn't enough, she's also a Reiki practitioner and writer. But to tell you the truth, the business success and professional talents aside, it’s her generosity and thoughtfulness that inspires me. No matter how much she has on her plate, she consistently remembers and makes time for the people in her life. She's supportive. She always checks on me, even by snailmail with hand-written notes delivered to my actual mailbox (just cause). She would offer to go to chemo with me (even just to sit quietly and hold my hand) or deliver homemade soup (my favourite) and go for quiet walks to watch birds. She pays attention and always listens so carefully. I'm really lucky to have her in my life.
It seemed right to start this series of female-focussed interviews with her. I hope you’ll enjoy reading her ideas and will also feel inspired (the way I always feel around her) to look upward, listen carefully and always choose to chase the light.
Jess is a photographer, writer and small business owner based in Toronto. She has a BFA in Photography Studies from Ryerson University and has been a freelance photographer for 16 years. Photography has taken her all over the world from Trinidad to Cuba to France to New Zealand. She loves using her camera to dive into the lives of others. Jess is the creator of Birds Oracle Deck and is currently working on a second volume of it. Along with her bartender husband, Josh, she runs Bartender Atlas, a worldwide directory of bartenders. Through Bartender Atlas, they create and organise cocktail-focused events all over the world including Toronto Cocktail Conference, an annual event for over 500 people. When not busy creating and scheming up new projects, Jess can usually be found in nature looking for birds or hopping on a plane to her next adventure. She loves coffee, pilates and being Auntie Jess to her three nieces and one nephew.
Eau de Vie, Melbourne
1. I’ve known you for a while now, over 14 years (!!) and one thing that never ceases to amaze me is your determination. You manage three business and are also writing a sequel to Birds Oracle Deck. What motivates you to continuously create?
I like to keep busy and I like to constantly challenge myself. Since graduating from University in 2003, I have run my own business. When you are living that self-employed/freelance life, there is no time to really pause. It is a constant hustle to get work and to build something really great. I love the challenge of all of that. And once you start building something and start getting feedback from clients and consumers and followers, it feels so good. Suddenly you have these people cheering you on from the sidelines which pushes me even further to do great things. The last thing that I want to do is disappoint them.
Jess signing copies of the Birds Oracle Deck Book that accompanies the deck
2. I’ve heard that it’s not easy to run a business with a spouse but you and Josh have successfully launched a company that demands a lot from you both. What do you enjoy about that process and can you share some of the challenges?
I love that through Bartender Atlas we have been able to create something that combines both of our skill sets. It is a constant challenge for us working together. We learned early on that we should each rely on our strong points and trust the other with their own. We have started dividing up the tasks of what we do. Josh becoming more of the “face” of the business and me being more “behind the scenes”. But, like everything in life, we do butt heads once and a while where we have conflicting ideas of how to go about a challenge so there is a lot of talking things out, a lot of time alone reflecting and then coming together again to solve the problem.
La Condesa, Mexico City
3. I love mugs but one of my favourites is the one you gifted me that belonged to your Nanny before she passed away. I love the portraits you took of her and her hands and that you wear her rings. You had the chance (sorry, I should say, you created the time) to sit down with her and record some of her thoughts. I think that’s such a special thing you did. What are some of the thoughts she shared with you, that have stuck?
Just before my Nanny turned 90, I wanted to create a video interview of her telling her story. Like I am sure everyone thinks, my Nanny was the best. She was one of the kindest people I have ever met and she always spoiled us grandkids. She lived a very humble life, she worked at a factory for 30 years before retiring. Terrible work but work that enabled her to live well in retirement. And she never complained once. The interesting thing in doing that interview was realising that she had never been involved in new technology. A phone and Cable TV is as far as she got. She never once touched a computer or a smart phone. She knew there was something out there called the Internet but she had never experienced it. I was also amazed at her childhood and how much our society has changed in a relatively short time. She grew up on a farm outside of Port Hope, Ontario. Her parents were immigrants from Ireland and England who met on a farm which is now where Sunnybrook Hospital is in Toronto. Once they had saved enough money, they bought the farm, traveling the 100 kilometres (or so) via a Horse and carriage. She went to a one-room schoolhouse that went up to Grade 8. Form there, her parents couldn’t afford to send her to a school further away to continue her studies so she moved “into town” which was Port Hope. That was just what you did in those days. She moved into a boarding room with her sister above a restaurant where they were waitresses. Imagine being 15 years old and this being your life. How spoiled we are today! (I could talk on and on about her but that is what first comes to mind!)
4. I have so many more questions but I’m going to limit this to four more. Anthony Bourdain said that you always ask someone what makes them happy...(sounds simple but it’s maybe the toughest to answer).
What makes me happy? Being outside. Walking in the woods alone. Swimming in the ocean. Laughing with my husband. Discovering new places. My nieces and nephew. A nice glass of wine or a shot of mezcal.
Auntie Jess with her sweet nieces and nephew
5. Thinking about and observing birds has become a big part of your life, but it sounds like you’ve been drawn to them since you were young. You shared a story about watching a flock of barn owls fly from a palm tree above you. I can only imagine how moving that must’ve been (the image has even stayed with me!). But in your recent years observing birds in their natural habitats, what have you learned from them?
I have learned that when it comes to birds, there is so much more to see. Birds are everywhere and yet we often don ‘t even notice them. You can discover so much of them even in your own backyard. Each species is so unique and it’s just so hard for me to describe how much I love them. Birds light me up.
Ferrunginous Pygmy Owl photographed by Jessica in Puerto Escondido, Oaxaca
6. As a photographer with broad experience, you’ve captured special occasions, people in movement, landscapes, the corporate world, art, wildlife, and lifestyles. You’re given access to people’s personal spaces and present them with the gift of capturing a moment in time. What does it feel like to stand behind a REAL camera, look through the viewfinder and explore a perspective that is true to the subject and your art.
My camera gives me access to people in a way that I would not have. I get these intimate insights into their lives and I learn so much from it. I learn about their life stories and their insecurities. It is such an honour when people choose me to document them and it is such an honour when they choose to share a part of their story with me. There are a lot of life lessons to be learned when listening to others share and in learning from them, I believe that my life has become much richer and vast.
self portrait, Toronto
7. you have a thing for chasing light - whether it’s early morning portraits (of land, water, people or birds) with the rising sun or the fullness of the moon. When I look at your pictures during those times of the day and night they capture a magical feeling. What is it about that specific light (sunrise and moonlight) that draws you in?
This is such a hard thing for me to describe. Light makes me feel. I am drawn to it. I do better when I am in places with natural light. My heart swoons when I see pockets of light. Light peaking through cracks. Light reflecting from skyscrapers. Patterns that light makes through things like the leaves of trees. It lifts me up and simply inspires me to create images. It allows us to see our world and spaces differently. I have learned that it is always worth seeking and hunting for good light nor matter how early you need to get up for it!
Like this strip of light on a building that I took here the other day.
Like the light here that hit just the head and upper body of this woodpecker perfectly.
8. And finally, do you have any questions for me?
Not right now but I bet I can come up with some! :)
This photo was taken by Jess. She isn't just captivated by the light of day, in fact some of her most beautiful photographs are of the moon. Visit her on instagram to see more - they are magical.
I have so much more that I could talk to her about (and we will again, soon). Jess and I usually skip the small talk and get right into the real stuff, so this is definitely going to be the first of many "interviews" and maybe one day we can record one of these. For now, I'll just hold onto her wise words and the gift of her friendship. I'll always be cheering you on from the sidelines, Jess! Thank you for taking the time to answer these questions for me (and for being patient as I figure out how I want to present them). Keep up the inspiring work and never stop chasing that light. Love you!
new year, new project
Hello and welcome to The Cactus Flower Journals: a collective that will feature journals, interviews, essays, illustrations, poems, possibly some bad puns & other stuff about life's beautiful (and sometimes prickly) moments.
I have had a journal and loved writing for most of my life. It was my favourite subject in school and I switched majors in University to pursue studying it. Blooming late, but in perfect time.
It's no surprise that eventually my words would catch up with me, needing a larger space to grow. Words have the power to build, connect, inspire and flatter, but they can also wound, break, offend and belittle. Words have the power to represent a feeling, which can grow into an idea that can evolve into an action.
And like a cactus, standing still and protected by some thorns, ideas take time to blossom. I hope we can share some kind and honest words here. It's an extension of kisii, and gives me a place to share my first love: writing.
The thing I love most about owning a small shop are the connections I've made to other like-minded people. Karen is one of those people. In my first year of opening the shop, she bought coconut wood bracelets for her relatives as Christmas gifts. I remember feeling so excited when she sent me a message, asking if I would be able to make her more than the 3-4 isted in my inventory on the shop. Of course I would! I never imagined that someone would want more than a few, so this made me really happy.
We kept in touch over the years and I admired her work from afar, listening to her podcasts and reading her blogs - feeling connected from afar and always remembering the support she offered me in my first year of owning a small, creative business. Karen is that kind of person.
A few months ago, after I read that her family had to rebuild their home from scratch after Hurricane Harvey, I felt I compelled to reach out. We decided to join efforts and begin a project to "make light" named after her podcast.
For every necklace or keychain sold, the proceeds will benefit luminAID's Give Light Initiative, a company whose mission is to bring safe light to those who need it the most. I'm so grateful to Karen for inspiring me to shine my own light where I can - it's these connections that make it all worth it. Please join us in fundraising for this important cause ♡
The loom is ready for a new adventure!
I'll be using some very special yarn from Americo Original for this one. This lovely shop will be closing soon and I'd like to celebrate its legacy with a piece made using some beautiful, naturally-dyed Peruvian yarn.
I found Americo the year I began chemo. I had no idea at the time that I would open a shop, or learn how to use a loom to weave. At the time, I was just a beginner knitter, making baby blankets for all the newborns in the family.
Nicole has been an amazing mentor and friend over the years. My winter hats might still turn out like pointy triangles, but it's no fault of her patient teaching. She's planning her retirement now and I'm so excited to see where her new adventures will lead to. As an Ayurvedic practitioner, I'm sure her wisdom will benefit many, just as her love of knitting has.
One thing is for sure, I will keep going back to her for knitting advice. The things she's taught me about slow-craft hit really close to home on so many levels. Knitting is like life - we try, make mistakes, reflect and try again until we get it just right.
I've been reading a lot about the Scandinavian concepts of Lagom (not too little, not too much), Hygge and Lykke (simple pleasures and everyday happiness). I've also been pulled towards decluttering my personal space to make room for...well, more space basically. Clear space, to help keep my mind clear too (sidenote: chemo brain fog is a thing!).
So, as someone who wants to live with less, it's been an interesting challenge as a small business owner. Of course, like any business, I want to see it grow and become a steady source of income. But to embrace this philosophy with integrity, means creating stuff with purpose.
While Lagom is about finding balance, Hygge is about the cozy comforts that surround you. Even for the mindfully minimal person, the point is not to detach and deny yourself of the simple pleasures in life that bring you happiness. Rather, think of yourself as a curator instead of a collector and fill your personal space with things that are meaningful.
Pretty honest it turns out. I recently bought some from Maiwa and it is the most beautiful linen I've ever seen.
Embroidery is a big part of my family's tradition so it's no surprise that I grew up to adore it. Who wouldn't fall in-love with the intricate work involving soft textiles, colourful dyes, beautiful threads and block prints? I know I did. So when I discovered Honest Yarn through Maiwa, I couldn't resist getting my hands on some (literally). This beautiful linen was naturally dyed and made from Belgian organic flax, spun in Bengal.
You can read more about the company here, and please do because they have a Foundation, which is a non-profit organization dedicated to education and the relief of poverty for traditional artisans and their family. The purpose is to reduce poverty in rural villages by promoting artisan self-sufficiency. Good people doing good stuff.
I decided to use this beautiful, naturally dyed organic linen to make these tassels. Paired with birch wood and some simple silver details, I am so happy with how they turned out.
My family is from Kenya, and a love of wildlife in all of it's forms was passed down to me. David Sheldrick is well-known in East Africa for the work he began in the 1940s, transforming some of the land into one of Kenya's National Parks. His conservation efforts were unparalleled for his time and his love of wildlife helped change attitudes. He founded The David Sheldrick Wildlife Trust, a haven for elephants, rhinos and many other animals.
Since then, so much has changed and yet, there is still so much important work to be done. Lately I've been trying to learn how to rewire my thinking by focussing on the positives in life, but it's silly (and ignorant) to ignore the important work that needs to be done. Today, threats to the environmental stability of Kenya includes elephant and rhino poaching (for ivory and horn), snaring of animals for large scale trade (some countries will pay big bucks for that rare, game meat), and illegal logging of forested areas (which is another issue all together). But The David Sheldrick Wildlife Trust is doing its part and more, and one program in particular - their incredible foster program is an example of that. I hope through these types of small efforts, we can raise some awareness. The Last White Rhino is now gone, and I think we have it in our power to create a shift in animal conservation in our lifetime.
So, to celebrate the arrival of summer, I’ve decided to donate all proceeds from the sale of the bracelet pictured above towards DSWT. It was handmade using carved birch wood, and features one hand-stamped and sterling silver fair trade elephant charm.
I’ve been an elephant foster for a few years now. I love it and hope you’ll join me in helping these beautiful elephants find their way back to the wild.
The fundraiser will run until August 1. Thanks for your support! 🐘❤️
Have you heard of the company péla? It’s the first compostable phone case, made using biodegradable plant-based materials to help keep less plastic out of our oceans. I have always been a lover of the ocean and have never owned a phone case, so when my phone got smashed beyond repair, this was my chance to justify the purchase of a product I've never needed before.
Signe, a good friend of mine who is an eco-blogger introduced me to the company. I loved their mission: trying their best to preserve the planet for our children and beyond. They don't claim to be perfect in their efforts but they are always pushing themselves to believe in better, to be better and to do better every single day. That is a philosophy I respect.
I feel so good knowing that companies like this exist. And I LOVE that a Canadian company is leading the way towards positive change, with a truly sustainable, innovative eco-friendly product that can really make a difference. It's beyond ironic that this plant-based material is going to protect my technology.
Can you believe that 1 million seabirds are killed annually by ocean plastic? Or that 93% of Americans aged 6 and up test positive for BPA. Too many more scary statistics.
The earth is what we all have in common, and we must do our part to take care of it.
Wouldn't it be amazing to get home and find a surprise parcel filled with things you love at your doorstep, or a hand-written letter waiting in your mailbox? Warm, unexpected, friendly gestures melt my heart. I'm sure there are lots of people out there who still make time to do things like this for others, but it seems more and more rare.
Life is busy. We keep ourselves distracted by aiming for more, planning for more and even spending more. More, more, more! It's a culture of consumption. That's one of the reasons I tried to create a shop that is filled with goods that are handmade with intention. But is there a way to balance a slower, more mindful lifestyle while hustling to be a girl boss and a teacher, and still make time for random acts of kindness? Sure there is!
Time is no infinite resource (unless we're talking about it in a grander scale, relative to the Universe). Becoming aware of how we spend our time is a start. For example, I wasn't on social media until recently so it takes me a little longer to learn/understand it, but the hours I spend each day online can be saved. I don't have to use as much time thinking about daily posts or Instagram stories to build an authentic brand. People who care will be there. What does it matter how many followers you have, if you're not truly connected to them? All that time spent thinking about the online world suddenly becomes extra time. Maybe the online world is a giant, black hole where time may actually be infinite - it's always there regardless of where you are.
Maybe we can find little reserves of time in our day that can be redirected in more meaningful ways that make us a little nicer to ourselves and the people around us. Like a tree that spreads it's branches in all directions, we can create goals and make plans that are not based solely on ourselves, and our roots of kindness will grow farther. We can make our own work more meaningful, and bring joy to others too. I'm trying to reinforce this in my own life these days.
So here's our homework: do something really nice for someone this week. Follow the ideas in the picture above (taken from The Little Book of Lykke: the Danish search for the world's happiest people), or think of something different. Do something for someone who isn't expecting it. Just cause. Here begins my new personal project to start random acts of kindness. I hope you'll join me on these warm and fuzzy adventures.
I've always been interested in meditation. Having grown up in a South Asian home during a time where getting 'Indian' groceries meant driving all the way to Gerrard Street in Toronto for fresh mangoes and spices, I also had the incredible experience of learning about Eastern medicine, spirituality and culture (an education I wouldn't receive in public school).
As a kid, I remember watching my Grandfather silently practice yoga with 30 minute headstands, or watching my Grandmother cook traditional foods, listening to my family gather to sing and read traditional poetry, or even enjoying freshly picked mint from a loved one's garden...there was method to each practice. They were being mindful.
As a teenager and young adult, I would watch my Mom stand before her special spot at home and light a diya (homemade cotton wick and ghee in a small clay pot). She would meditate and send out good wishes in silence. My aunt told me about Vipasana (a silent retreat) that she attended for one week where everyone just meditates in silence.
Meditation was everywhere, and people who influenced me were making it a part of their daily life. And science began to back-up the theories. Researchers began to study the effects on the brain through neuroscience. Doctors began stating that stress is a leading cause of heart disease, cancer and pretty much every other ailment.
We spend a lot of time in our daily life multi-tasking. I wonder how much more productive and creative we would be without technology distracting us (this journal certainly wouldn't be published here if it weren't for my laptop). We need to find more time to rest our minds and reset. I know I do.
When do you feel the most focussed in the day? Have you wanted to try meditation? If so, try this exercise to help you get started:
So, open a window and listen to the breeze, put on some of your favourite music. Do something that requires all your attention and helps you to slow down. Whether baking, reading, knitting, crafting, gardening, running, yoga, traditional meditation, singing, cycling. Something that gets you away from stressful work or screens.
Just focus, take a deep breath and enjoy that moment of zen.
Ever wonder how we construct our own future? Thought leads to impulse. Impulse evolves into action. These little actions can lead to big life changes and every little thing has a purpose which serves as a catalyst for change. Everything we encounter triggers a response that forms a little impulse that drives us forward, leading you to this present moment, and with each moment there's a different purpose. The beauty of finding your purpose is that it can always be reinvented, or in this case, repurposed.
The same can be said for the everyday objects we fill our worlds with. They have a life and energy of their own, and can be used in so many different ways. I had some leftover clay and decided to repurpose it into some beads. I've never made my own beads, so this was a fun experiment for me. I decided to string them onto vegan suede and am planning on adding them into the shop. You can even add some essential oil to them, as clay retains the aroma.
I feel happy when I see the finished product. It reflects all those tiny decisions I made that led me right here :)
Wherever your road leads you, I hope it brings you happiness.
(easier Within you there is a stillness and a sanctuary to which you can escape at any time. That's what I felt the first time I practiced savasana. I felt peaceful and my mind was still, while the rest of my body was buzzing after being able to finish an entire class without collapsing on the mat. Yessss.
But whether practicing in a class or in a quiet spot at home, this is such a great pose to incorporate into your daily life. I realized after a few classes that I didn't have to reserve this pose for yoga only. Although believe it or not, you have to practice it in order to master it. Savasana involves the ability to spend extended periods of time in deep relaxation (easier said than done).
Maybe collapsing is just what savasana encourages us to do. In a world that is rushing forward and prides itself on being able to multi-task, it really does take some effort to shut it all down, for a few minutes at least. And while the challenges of the day only temporarily disappear, it feels restorative to take a mental break from it all.
So, let yourself let go and collapse onto the mat. Your body will thank you for it later.
when I was a kid, my Mom decided to send me to pottery camp. By camp I mean my Dad's client who was a potter and graciously offered to babysit me for a week in her gorgeous studio filled with clay. I was a happy camper and had the best time.
Louise and the other artists taught me a new technique each day and by the end of the week, I had a collection of deformed treasures. There's something really special about working with clay - the earthy energy of it. I loved every minute of that camp but never went back to working with clay until recently, when I started experimenting with these little dishes.
So for this family day weekend, I wanted to say thanks to the potters who were my family for a week and to my Mama for encouraging me to express myself.
Kisii is a small city in Kenya. It's not where my family is originally from (Mombasa), but in the 70s when my Mom was starting her teaching career, she decided to move there.
To be a young South Asian woman in Kenya in the 1970s provided an identify full of intersections. For my Mom, it meant moving away from her family and friends in a big city to a very remote and rural town in a country divided by politics, racial injustice and gender inequality. It was a bold and brave move.
Full of excitement and fear, she forged ahead, living in a small residence. She taught in a classroom that many would consider ill-equipped for learning in today's digital age. But the kids prevailed and succeeded, they even planned a class field trip to climb Mount Kilimanjaro.
Decades later in a new country and at a very different time, I started facing similar decisions to the women before me. What was I going to do with my one wild and precious life? Like my Mom, I am also a teacher with a layered history full of intersecting identities. I'm learning the importance of my past. It was full of risk, sacrifice, optimism and hope. My parents immigrated from Kenya to England and then Canada for a better life.
So kisii represents a starting point. It's a symbol for taking a risk while having a heart full of good intentions.
Hello and welcome! This is my first post and it's a personal one. As a somewhat introverted person, I have been reluctant to share my experiences, but in an effort to help raise awareness and promote the work that I am proud of, I've decided to open up a little about where it all started.
10 years ago I found out that there was a mass growing in my calf muscle. It was deep in the soleus and for two years we quietly watched and waited, as it continued to spread upward through my soft tissue and muscle. I'll spare you the details because that's a heavy story to begin with. But it was fuel to my fire.
Almost everyone I know has now been touched by this type of experience. Either a family member, a partner, a friend, coworker or even a neighbour. One day you wake up and suddenly you're right in the middle of it - listening to the jack-hammer sound that the MRI machine makes and you frozen in time, unable to even wiggle a toe. It's like hitting the pause button on your body while your mind is racing forward.
And despite the upheaval, there is no cure, but the human spirit somehow prevails. Good people are out there to help you make the right decisions. And you stop asking, 'why me?'.
Why not me? I don't know when it happened, but I realized this is it. This is my weird and wonderful world. Because outside of that machine, I had a classroom filled with amazing students at a school that inspired me each day. A small publishing portfolio, incredibly loving people that held me in place and didn't let me fall. A notebook to write in. Music, books and poetry. A small, beautiful garden. Coffee. And chocolate, lots of coffee and chocolate.
And here I am, 10 years later, learning to balance all the things that make my life and realizing that all of this hospital stuff is just a fraction of my whole. Outside that MRI machine was the rest of my life, and I decided to fill it with constructive work and to donate proceeds back to the hospitals that have helped me so much.
Onward and upward.
exploring life's beautiful (and sometimes prickly) moments through interviews, essays, journals, illustrations, poems and other stuff.