A Spiritual Journey with Breast Cancer
Spirituality has a different meaning to different people. This I have learned through life’s trials and tribulations.
When our health is challenged, this can be a magical time when people come together and enjoy time with their family and friends.
During the healing journey, we do often reach out beyond ourselves or this planet to find the strength we need to endure the peaks and valleys.
I believe part of the process is a time of reflection. A time to appreciate life, our friends, our family. What I find matters most is trying to be a good person, to appreciate and respect everybody, no matter what your religion is, if you have one.
As I look at the journey over the past eight months I am overwhelmed at the love that has surrounded our family and our community. A magnitude greater than I could have ever dreamed. I have been asking myself the question, “how do I say thank you to everyone?” So many have answered this question by ensuring me that resting and returning to my healthy self is the greatest ‘thank you’ I can give back in return. This I promise to do over the next six to nine months.
As I am of the Christian faith, I also believe I have someone else to thank for all this LOVE.
“Praise GOD from whom all blessings flow…!”
So, to those of you of the Christian Faith – thank you for walking with me.
To my dear family and friends who are spiritual and not of the Christian Faith, I do believe there is a message in this for all of us. However we find our way through the darkest times, it is so important to hold on to one another and be grateful for the lessons along the way.
Whether I will return to work at some level or retire and take a different direction remains to be seen. Through faith and work the answer will reveal itself in time.
Thank you all so much. My wish for you all today is for peace and strength.
Love Joy
Free to be me
Free to be me
What’s the character trait that you admire the most about yourself?
Having the insight to know when I am being challenged, when I am not good at something, and finding a way to learn that encourages me to grow and build character.
The Pendulum Swings: “Survival Mode” vs. “Open to Recieve”
I am inspired to write this blog and have it reach people who are touched by cancer in their families, with their friends, to cancer survivors, and those in active treatment.
Wow, what a week of discovery this has been. How far can you stretch yourself is the question?
The Answer: From one end of the pendulum to the other. Huh? What pendulum?
From my perspective one end of the pendulum is self protection, heightened awareness, self-preservation, isolation, containment, fight, flight, or freeze. Many call this “Survival Mode” – a familiar paradigm to those of us in active cancer treatment.
The other end of the pendulum for me at this time is the “Act of Receiving” – a paradigm that allows one to be open to contribution on a larger scale than ever experienced before.
To be open and vulnerable during the journey of treatment for a potentially life-threatening illness is so contrary to human existence, one usually retreats and isolates oneself to some degree. Then there are circumstances like financial hardship that require that the pendulum swings. To be open to a community fundraiser to help us along this journey, while in the space of “retreat and restore”; well, this is taking more courage than I could have ever anticipated. Now I see that swinging from ‘survival mode’ to the ‘act of receiving’ is required for this part of my healing journey.
I keep thinking of a kitten in an unfamiliar location feeling threatened and shaking, wondering whether to fight, take flight, just freeze. How much gentle encouragement does it take for the kitten to come out willingly or allow itself to be picked up and carried?
Then my mind envisions a black bear cornered in a cave, in a mode of self-protection, with the mechanism of fight/flight/freeze dominating its existence and I ask myself, what form of gentle encouragement would have the black bear be in the space of being “open to receiving”. I became aware of the paradigm shift required to find a balance. I went back to bed. I told myself, I don’t need the answer to all these emotions today.
A couple of days later this scripture was delivered by a dear friend who helped me find my way.
When pride comes, then cometh shame: but with the lowly is wisdom. Proverbs 11:2
The amount of shame I felt was equal to my pride. What would life look like from a humble point of view. A view that could gain wisdom – the kind that can help others.
For me, finding this balance takes mindfulness, prayer, courage, determination, and a commitment to being mentally healthy on a daily, hourly, minute-by-minute basis. Thank you to the Cancer Support Group at the Nanaimo Hospital for helping me to figure this out.
What I have learned are some of the reasons why people do not have fundraisers and do not feel they can be open to receiving. I am surprised at the intensity of emotion and the sense of unbalance it provoked.
I am so grateful for the quality of life that has become available to me. With the paradigm shift that enables me to be open to receiving, I live each day fully instead of living in survival mode most of the time.
So, the other day, I chose to live fully, and decided to join a group of people for a couple of hours as I felt up to it at the last minute. One of the people whom I did not know came into the room later with Kleenex and a nasty cold. Well, so much for being open to receiving, survival mode kicked it, I hit self-protection-flight mode, and headed home. The pendulum swings again. Now that it is ‘flu season’, I will remember to take masks with me wherever I go.
Thank you all for your support in all the ways you have and are contributing. Being able to rest and know things will work out as this too shall pass is a blessing. It’s great to be ‘alive’ – physically and literally.
Join us at the Lantzville Pub (7197 Lantzville Rd, Lantzville, 250-390-4019)on November 20/14 from 6-9pm for a Beer and Burger Fundraiser. Tickets $15 available at the pub or call 250-755-9512.
The link for donations in American Funds is: JOIN JOY’S RIDE USA – http://gfwd.at/1wcK4ce
The link for donations in Canadian Funds is: JOIN JOY’S RIDE CANADA –http://gofundme.com/g8tac8
Love Joy
Community Service
Your entire community – however you define that; your hometown, your neighbourhood, your family, your colleagues – is guaranteed to read your blog tomorrow. Write the post you’d like them all to see.
Why Cancer Fundraising??
Upon being diagnosed with breast cancer for the second time in May 2014, my life has changed dramatically. Daily concerns have taken a second place to completing all the tests, doctor visits and paperwork that is needed in order to plan the cancer treatment. Once the treatment started and the general plan was put into place, I notice my attention turned to questions about finances.
While cancer treatment is expensive, its not just the treatment that is costly. The cancer diagnosis has affected family finances in the following ways:
– lost wages as I am not able to work through treatment
– lost wages when my husband takes extended time off of take care of me
– travel costs of getting back and forth to treatment
– special food, comfort items and over the counter medications to help with side effete
– increased insurance premiums
All these costs have come at a time when I have neither the emotional energy nor the time to deal with the additional financial stressors. So, I am trying to put some person-specific cancer fundraising ideas together with the support of family and friends.
Some ideas that have come to mind:
– Event Fundraisers – i.e.: a Beer and Burger, silent auction, raffle, knit-a-thon
– A website link for readers to make direct donations – Join Joy’s Ride
– Maybe local businesses who would like to advertise on the website/blog
– Change Jars – plastic jars filled with spare change from friends, family, neighbours
Dignity Above All
I have known since diagnosis that we were going to be strapped for finances if I could not work. I have felt embarrassed about accepting this kind of help. I am so thankful to all the people who have smoothed the process by presenting me with a few different cancer fundraising ideas and letting me choose. This has been a great way to involve me without having to engage in activities that are too energy-draining or taxing.
Thank you to my Nigerian cousins Eme, Nkoyo, and Koko for your generous financial donations that got us through the summer months while my husband was a teacher on strike. Thank you to my Book Club Ladies for the generous financial donations that have covered trips to appointments in Vancouver and Victoria. Thank you to my husband who cooked the entire Thanksgiving Dinner this year and served us so selflessly.
And thank you to my entire community for your love, support, meals, gift baskets, self-care products, scarfs, head wraps, scarf pins, donations, and PRAYERS.
Love Joy
xxoo
AWEtism: Childhood Revisited
Sure, you turned out pretty good, but is there anything you wish had been different about your childhood?
Yes, I wish I could have been a child longer. At the age of nine years, my father was a full time university student and my mother was doing her nursing refresher course. We lived on the university campus. I was the oldest girl in the family with three siblings, the youngest was three years old. Based on my temperament, wisdom, and natural ability to care for those I love, I unconsciously chose to take the role of the third parent in the family. From this family role, I then moved into the care taking role when I entered post-secondary school at sixteen to study nursing. The responsibilities I shouldered took the place of playing with easy bake ovens, making close friends, and being carefree.
If you have kids, is there anything you wish were different for them?
As for my children, when they were in public school, I wished learning had come easier to them. I wished their body’s sensory challenges hadn’t make it so difficult for them to be social. I wished anxiety hadn’t make is so hard to try new experiences that they later enjoyed like travelling to other countries and playing instruments at blues jams.
Now that my sons are transitioning to adulthood, have friends, attend post-secondary school, are employed in jobs that they are succeeding in, and are good people with kind hearts, I do not wish anything was different for them. I thank my parents for believing in me, being role models of resilience and bounce back ability, and seeing me as the perfect parent for their grandchildren who were growing up on the autism spectrum.
Every child is unique and will have challenges at different times in their lives. Who we can be as their guardians, the opportunities we provide for them as they grow, and the patience we bring each day to outlast their will; are key elements to their healthy sense of self. Taking the time to teach them about self-regulation, emotion management, hidden social rules like the concept of public and private, circles of relationship, puberty changes, healthy sexuality, age of consent for sexual activity, sexual decision making, healthy sexual expressions, and mutual consent, is the reason why I wish nothing was different for them.
The dialogues required to teach the above topics taught them to trust communication and the negotiation process. As a result, communication is their first line of defence when things go awry. Now I am glad that socio-sexual education was at the forefront of their training and development. It taught them to understand people in a way I did not know was possible for them, kept them out of trouble, and became the foundation from which they continue to build meaningful connections and relationships. Even though we are in the technological age and we have amazing tools like iPads, autism apps, communication assistive devices, and evidence-based interventions to teach social skills; nothing takes the place of the face-to-face dialogues we created together so we could learn from each other and make the abstract of human relationships more concrete.
These dialogues took place while we were driving, at the dinner table, after sex ed classes at school, when social mistakes happened, when we paused the movie on family movie night – during the romantic scenes to discuss the relationships between the characters, when I finally gave permission for them to watch the Simpsons, and when they had questions about their growing and changing bodies; to name a few ‘teachable moments’.
Way to go guys, you have exceeded my expectations as your mother. I do not wish you were any different and I am moved by who you are and what you bring to the world. I see now why sometimes people think autism can be cured. In our case, autism has not been cured. However, you have learned what you need to be the best YOU you can be and you know where
to get the support to do so. I feel blessed.
How do you use dialogue to teach about healthy sexuality when your child’s/client’s questions create ‘teachable moments’?
Autism Memoir: Sliced Bread
Most of us have heard the saying, “That’s the best thing since sliced bread.” What do you think is actually the best thing since sliced bread?
I found it so hard to pick one thing so I am going to list as many things as I can come up with in ten minutes.
– Raffi, children’s singer, entertainer, and advocate – because we could take his music with us anywhere that we took our son’s green plastic guitar. As long as he could sing he was happy
– McDonalds French Fries because they were exactly the same all through Canada and the United States so we were able to get through our driving vacations, and meet our children’s need for sameness when we visited relatives in the Midwest
– Video game strategy guides because we were able to use them to create an interest in reading at the Grade 1-2 level and satisfied their curiosity enough to delay their interest in videogame consoles until they reached the intermediate Grades 4-5
– Lego because we could perseverate for hours on one project together and call it ‘quality family time’ instead of ‘stimming’
– Kate – the life skills educator who made us go out for ‘couple time’ while she taught our boys to do their own laundry. She then taught them how to choose a recipe for dinner, shop for the ingredients, cook a meal, and serve their parents when we came home in time for dinner at 6:00pm
– My First Real Hug – his last year in high school, his last talent show, his last gig on the high school stage. I am in the audience enjoying the show. At intermission I notice his bass player has not turned up yet and my son is pacing backstage. I promise to track down his ‘not so reliable’ bass player. I pick up the bass player from another gig as he is between sets and available to play the three songs at the talent show. Good timing.
We drive back to the high school and the bass player gets up on stage in the nick of time to play the three songs the band has rehearsed. The four-piece rock band does an amazing performance. I am back stage when my son finishes performing. As he sees me backstage he walks intentionally in my direction with big strides, a smile on his face, and his arms stretched out in front of him. I can tell he is coming to thank me.
As I raise my right arm ready to give him a ‘high five’ or a ‘fist pump’, he puts my arm back down and says, “No high five for you, today you get a hug!” Then he puts his arms around me, lifts me up in the biggest bear hug, twirls me around and says, “Thank you!”
I remember when I used to watch typically developing preschool children run into the outstretched arms of their parents who were crouched down to receive them; and laugh as their parents picked them up and twirled them around.
Raising children on the autism spectrum I did not think this day would ever come for me. It took 16 years.
It felt like ‘the best thing since sliced bread’.
Autism Life Skills: Music
What role does music play in your life?
Music is the essence of my life. I got my love of music from my father. I lost him ten years ago. My father was a Jamaican man who played calypso music on his acoustic guitar. When he sang he reminded me of Bob Marley, Harry Belafonte, and Louis Armstrong. One of his favourite songs to sing was “What a Wonderful World.”
We are a musical family. He gave us that gift. I didn’t know what a gift it was until well into my adult years. I thought every family sang together. We would spend Saturday evenings singing hymns together as we practiced for church on Sunday. My father was a minister, my mother was a nurse. My sister and I sang at talent shows, weddings, receptions, and school occasions too.
Every now and then I have glimpses of the roles music played in my life.
I remember when my sister and I won the School Talent Show by performing Little Eva’s “Locomotion”, dressed in our matching ‘pink hot pants’ which I am sure my mother sewed for us. We had so much fun rehearsing the dance moves in the living room as my mom occasionally reminded us that the living room was for “quiet activities.” We were so carefree and happy in those creative moments; which I also took for granted.
I remember playing clarinet in the high school band. In my adult years I played less and less. My music world magnified when I married an educator/musician/bass player. He fit right into our family music jams.
When my father passed, our whole family sang “Redemption Song” by Bob Marley at the front of the church and my husband stepped in as the guitar player. He played the guitar like my Dad would have played it. There in that moment I had a glimpse of their mutual talent to play music and how truly unique a gift it is to be able to contribute to others and oneself in this way.
I remember being at the Nanaimo Blues Festival, dancing down by the oceanside, the sun shining, the sky blue, a cool drink in hand, friends and family close by, rhythms flowing through me as my muscles move themselves in expressive ways, almost like a stimulus-response experiment. I say to myself as my body flows to the beat of the music, “This music is medicine!” I had no idea how much truth would be shed on this statement in years to come.
In my role as a parent and professional I learned of the many advantages of music education. When a 5 year old boy with autism needed some guidance with communication, he was invited to join a research study at the local child development centre. The study would evaluate how music could be used to teach children on the autism spectrum elements of communication. In his case, the focus would be on “turn-taking in communication” so he could converse with a peer instead of just downloading about his own restricted interests.
Through drumming to 4/4 time and sharing the beats in each measure with the instructor, he was able to learn the concept of turn-taking which we then generalized to sharing french fries (his favourite food at the time), sharing snacks with peers (he would always melt down at snack time when many children’s hands took something from the plate at once), and words in conversation.
They started out with two drums – one for the instructor, one for the him – and drumsticks. Eventually, he was able to share the same drum with the Instructor, he was able to use his hands instead of drumsticks, he was able to clap his hands to the rhythm, and he was able to learn other rhythms. I could see he was experiencing a sense of connection to another during the activity. Below is an example of how the rhythms were divided.
SAMPLE RHYTHMS
1 2 3 4 / 1 2 3 4
Instructor / Client
1 2 / 3 4
Instructor / Client
1 / 2 3 4
Instructor / Client
1 2 3/ 4
Instructor / Client
From research studies such as these, the effectiveness of music therapy for some individuals on the autism spectrum has been documented. From the early beginnings on the drums, this young boy grew to become a nationally recognized award winning drummer in high school and is now a young adult who is able use his gift to teach music to youth with developmental challenges that hinder their learning. He has peers, a social life, confidence, and growing independence.
How has music been nurturing in your life?
AWEtism: Dearly Departed
Dearly Departed – write your own eulogy
I’m lying here on the couch, sleeping an average of eighteen out of twenty-four hours a day. I am recovering from my third round of chemotherapy, five more rounds to go as part of the breast cancer treatment.
I am dreaming and my imagination is very active. I am wondering if I will ever have the strength to return to my position as a Regional Education Consultant with BC Options for Sexual Health (Opt). As I patiently move through my healing journey, I am eagerly completing the Syllabus for the Course Component of the Opt Sexual Health Education Certification (SHEC). I am thinking of what my eulogy would say if someone was presenting it to my colleagues:
JOY
Her name really suited her – Joy
Her smile so radiant
Her heart so generous
Her mind so imaginative
Her hands so creative
Her work so inventive
Her commitment to what is possible – infectious
Joy began her nursing career in 1982 after graduating from the University of British Columbia with her Bachelor of Science in Nursing. Joy then moved to Elkford BC to be a public health nurse. In the East Kootenays amongst the snow capped peaks Joy got her first real experience in public health. The high school in the remote community of Elkford started requesting sex ed classes for their students almost immediately upon her arrival.
About 6 years later, with the onset of AIDS in communities, Joy was provided with opportunities to specialize in the field of human sexuality and she jumped at the chance. Since that time Joy has been an advocate for and a deliverer of comprehensive sexual health education programs to a variety of audiences, including individuals with neuro-developmental challenges – specifically autism.
Within the past 10 years Joy has co-authored three professional development programs with Options for Sexual Health (Opt), a non-profit organization which is the largest sexual health agency in Canada, that address the specialization required to teach/talk about sexuality. The programs include:
- The Comfort, Attitudes, and Values Evaluation (CAVE) Curriculum – a human sexuality training program that builds comfort and confidence
- Opt’s Sexual Health Education Certification Program (SHEC) that trains and certifies Sexual Health Educators. The first of its kind in Canada. To date over 30 individuals have graduated from this program
- British Columbia Institute of Technology (BCIT) Sexual and Reproductive Health Certification Program for Nurses who work in the area of contraceptive management and sexually transmitted disease management.
Joy really enjoyed her studies in the field of human sexuality and was in the process of completing her Masters in Public Health and Human Sexuality. Discovering that the best way to take care of her returning health was to have more control over her daily schedule, Joy took a courageous step and branched off on her own as the founder of JDB Associates Consulting Ltd.
Joy said she had found her ‘calling’ when she knew she could support other parents of youth with autism going through puberty, adolescence, and transitioning to adulthood; as she had just walked the path herself. With all of the new technologies and apps being used to teach youth with autism, she found ‘dialogue’ to still be an essential and missing component to teaching sexuality. The ability to communicate about this sensitive issue with a trusted adult in a safe space, using whatever communication devices one needed was a dream she carried for all of her clients – youth, parents, guardians, trusted adults, service providers, and professionals.
On the personal side, Joy met her husband in 1985 and they were married three years later. This is their 22nd year of marriage. She was so proud of her sons who grew up on the autism spectrum. She knew that she was on the ‘leading edge’ acknowledging her boys as ‘sexual beings’ as she supported their healthy social and sexual development, and their independence as they transitioned to adulthood.
If Joy was here today, she would not to tell you about teaching sexuality, but show you how she taught some of the most basic concepts to her own children and clients with autism, that are essential to understanding human sexuality. As part of her legacy, she made sure to leave her teachings behind in the form of blogs, webinars, books, and educational materials to inspire others to use the simple ‘dialogues’ she used to explain the abstract concepts about relationships and sexuality in more concrete ways.
Thanks to the training and support she received from her colleagues, family, and friends, Joy was able to find the flexibility she needed to be in the workplace and provide the support her boys needed as they were growing up. For this support she expressed her gratitude daily. Thank you all for the support you provided such that she could live an authentic life celebrated through her full self-expression.
Thank goodness things turned out well, I am healthy and alive, and no one needs to read my eulogy, even though what is written guides my life today.
What would you want your eulogy say?
Sweet Sixteen: Enjoying Life
When you were sixteen, what did you think your life would be like? Does it look like that? Is this a good thing?
I was too overwhelmed to think about it. I thought my life would be full of good times. In my sixteenth year I graduated from high school and went to university. I left a small town of eight thousand people and went to a university of over twenty thousand students; a day’s drive away from home. I cried most of the way.
I didn’t know what my life would be like. I wanted to be “free”, on my own, doing it my way. On the hunt for intangible things – good people, opportunity, success. Where did that take me, nursing school. Being the oldest daughter, a natural-born caregiver, and an overachiever seemed like suitable traits for the profession of nursing. Besides, it was the only way out of the house with my parent’s money attached to my life while living one of their fondest teachings – “invest in yourself”.
I put one foot in front of the other and kept stepping until I achieved my Registered Nursing (RN) status at 18 years old and my Bachelor of Science in Nursing Degree (BSN) at 20 years. Now I was a nurse and my bigger dream was to find my life’s partner, get married, and raise children. At that time when I had no idea what life would look like, I’m kinda glad about; cause I preferred the element of surprise when I discovered both the gaps in my children’s abilities to learn and, when they filled the gaps with new abilities. Their peak moments were not always of schedule when it came to development so we had lots of surprises during their elementary years.
I think my desire to enjoy life from I was a little girl in Jamaica, separated from my mother for three years, has enabled me to find enjoyment and see the lighter side of life – even when darkness is looming, ; and I think this is a good thing.
What did you think your life would be like?
Autism and Creativity 