Today, I am like Bjork.. "I am a grateful grapefruit". I could slip in a Topiramate/Topamax joke here. Something about how you shouldn't judge a grapefruit by it's peel, I'm not a cannibal, I'm not even allowed to look at other grapefruits sideways... and shame on you for thinking otherwise. But you know, not everyone has had to give up grapefruit juice in the name of Topiramate. It's kinda playing to a niche demographic. So instead I'll just say, hey..remember that swan dress Bjork wore ..that was something eh? Sometimes working with friends has interesting results. I kinda liked it.
This past week or two has been rather physically challenging. If it were not for my mindfulness meditation, breathing practices and audio books, challenging would not be the word. ;) I find that I can push through the first week without too much trouble. Folks will ask how I am doing, and instead of speaking from my pain, I'll often say: I'm happy in heart. The people closest to me know what that means. It hurts but it hasn't got me in a headlock. However, two weeks in bed with migraines and various system flares will mean the laundry has gotten away from me, the dishes are stacked, the floors need tending and my cupboards have only a few protein drinks to call friends. The "Shoulds" are multiplying like rabbits around my bed and all I can do is sick the cats on them. Survival mode doesn't have room for much else. It can feel like a maze of stairs, all descending away from the world.
And yet there is this amazing feeling I carry around in my heart. A deep seeded sense of being understood and heard. It is a healing balm. I am reminded of the Sufi mystic Rumi and one of his writings.
Why the Prophets are Human
A woman came to Ali, "My baby has crawled out
on the roof near the water drain, where I cannot go.
He won't listen to me. I talk to him,
but he doesn't understand language.
I make gestures. I show him my breast,
but he turns away. What can I do?"
"Take another baby his age
up to the roof."
The woman did so, and her child saw his friend
and crawled away from the edge.
The prophets are human for this reason,
that we may see them and delight
in the friendly presence
and crawl away from the downspout.
(excerpt from Feeling the Shoulder of the Lion, Poetry and Teaching Stories of Rumi, versions by Coleman Barks)
I have been witnessing an outpouring of support within our community, not only from one #Royal to another, but you Lovelies have been supporting me in really powerful ways too. Launching #RoyalJet missions and #ChronicLife Moments when I am having a rest day... (these things make my heart soar,) and sharing more of yourself with us in so many different ways. These friendships are valuable to me in a very authentic and palpable way. Thank you for being here. You'll never fully know the impact you can have on another persons life. The notes I receive, continue to humble me.
There is something so powerful in knowing that another has been where you are- right now- and they have gotten through it. Especially with chronic illness because our experience can become so extended that we forget what pain-free feels like, or sleep, or a settled stomach, and we need to be in touch with people in all stages of the cycle. It gives up hope, keeps us grounded and helps us value our good days. Maybe best of all, it eats the beast: Isolation. The stairs lead up from there.
If you ever want to contribute, have an idea , or would like to find out if there are ways to get involved, drop us a note.. we'd love to chat with you.
A very big thank you, to my amazing female friends & Royals. I'm truly a grateful grapefruit.
Sometimes I stumble upon quotes that rub me the wrong way.
They maybe beautiful and haunting but the concept itself may nag at me.
This was one of those quotes.
But I wrote it down and kept it in a special place.
I tend to believe that when I have a reaction to someone or something, it is a lesson
waiting to be learned.
At that time I didn't want my suffering to be beautiful. I wanted to stomp around in it and get mucky. Why did I need to rise above when pain was so set on tearing me apart?
Sure I liked to spite authority as much as the next person and surely Pain
was running the roost at that point. Yet the
wasn't enough to lure me into being cheerful
about my station in life.
I took that scrap of paper with our quote written on it and put it in my wallet, sometimes I would put it under my pillow and other I would tuck it into the soul of my shoe.
I was determined to figure out my relationship with chronic illness. It was a most interesting experience. I found that I sought understanding from others. I craved it more than chocolate.
I wanted the doctors to understand the pain and turmoil I went through at the hands of these illnesses. Yet understanding the psychology of my chronic life was not really par for their course. So I sought understanding from friends and family. However life being as experiential as it is, I never felt truly seen or understood there either.
It wasn't until I extended myself some grace and acknowledged my bewilderment at my circumstances that I began to feel things loosen up a bit. I found I had more ground to stand on. The earth didn't feel quite so shaky under my feet. Of course, it was natural to hope someone else could extend gentleness to me first. Compassion can be easier to try on in borrowed form first. Especially in western society where we try to push through illness and injury alike. We are not great at listening to the body as a teacher. Instead we are disconnected and try to tune it out on a whole. Anyone with chronic illness reading this knows exactly what I am referring to.
I did what we all do for the first few years. I made myself worse by soldiering through. I refused to believe that my body was the boss of me. When my blood panels would come back with dangerously low white blood cell counts, I would feel personally responsible. Half joking, I would tell my doctor that I should've studied more. We both knew that I took these tests to heart and felt failure when the results were poor. I blame the residual guilt on coming up in the New Age Era, where it was believed we manifest our illnesses and there is a reason for everything.
I do not subscribe to this thinking today.
In time, the hard places in me started softening. The edges that had been leaving sharp little cuts in my flesh, began to heal. I started with a community of one and listened to all that was difficult within. Overtime I found greater community in others with chronic illnesses. This changed my life entirely. It healed me to be there for someone else. It made me feel real to know others shared in my life experiences. I had been going it alone for so long and feeling so lonely that I had never imagined knowing connection on this level ever again.
I believe it was Friedrich Nietzsche who said: He who has a why can bear any how.
This was especially true for myself. It was not romantic love that brought me through the darkest times, nor was it familial love. Once I plugged into a community of like minded migraineurs, #Spoonies and those awaiting diagnosis, I came home to my cheerful authentic self.
The initial Aristotle quote made complete sense.
Feeling heard and understood is foundational for well-being.
This journey continues with every new #Royal I meet.
Thank you for being part of a community of support and being the change you want to see in the world. I am always humbled by the grace and perseverance each of you #royals embody.
I am so grateful for the opportunity to be here, to listen and to be of support to so many amazingly strong characters. Your interaction and experiences bless more people than you can imagine.
It really is a beautiful world we have.
It's rainy and chilly on the west coast of Canada this week. The world is righting itself as concerns of drought are being put to rest by Mother Nature herself. The reservoirs are refilled by her rains. Yet the talk around the water cooler is not of rejuvenation and restoration but of loss. The mourning of summer's moving on, has begun. Here in Vancouver we have a funny relationship with fall. We adore the crisp air and the brilliant fiery colors in the leaves but we fear the inevitable melancholy that comes with overcast skies. It is a nod to the challenge we as a race face with impermanence. It is not always easy to let go of what is.
The only certainty in life is change. One of the hardest truths. I know I just want to settle into a state of being or a station in life for a decade or two. However, this impermanence we face is also a blessing. It means our pain cannot continue uninterrupted. We will shift and change with time, as will our perceptions of that pain. We can practice what the Buddhists call "beginners mind". We can awake with fresh eyes each morning and greet each day as a brand new experience...because it is. When we treat life with curiosity, we open ourselves up to experience ourselves without our limited beliefs and ideas of who we are.
Surprising things can happen.
At age five or fifty we can still be charmingly startled by self.
What a wonderful thing.
I am thinking of all you #Royals this weekend. You are being send a wealth of support and love.
Know that you are cared for and that you belong.
And of course, never forget your birthright, for you are nobly born.
Through the ages it is well documented and expressed that art is not reserved for a lucky few.
Art is a human right.
We were all born with the ability to create.
Time may shift our desires and we may leave our finger paints in the past, however, a life lived artfully does not require traditional tools. Look around your kitchen or your garden and you may see your art studio, the space where you create your masterpieces.
Wherever this place may be, honor it as the sacred space it is.
Art is the ability to know human emotion.
Those of us who have experienced pain
and suffering have borne witness to unflinching truths.
We have stayed with emotions that are not easy to house.
Chronic pain will make a phoenix out of the most hesitant of fliers.
It burns us down over and over again without destroying our innate light.
We are recreating ourselves in a million different ways.
Indeed this is a sacred art form.
Whether you ever lift brush to canvas or voice to song,
should you find yourself writing prose or
planting posies ... know that
an artist's heart lives
are of great value to us all.
I'll post the inspiration quote below. But how true is this?
Any of you who are familiar with me may know my deep abiding love for quotes. To me they are succinct little love letters, which express a wealth of meaning within a sentence or two. It is amazing to me how some folks can reduce a lifetime of truth into a spoonful of perfect consomme'. As a writer, I eternally fear the monster Verbosity.
I believe it was Helen Keller who said : Life is a succession of lessons which must be lived in order to be understood.
With illness I find this to be especially true. My Grandmother, Eva used to always tell me that my health was my greatest wealth, and to cherish it as such. Truthfully, I was just hoping this was some riddle which would lead to an eternal supply of candy. I'm realizingas I write, in an effort to keep things lighthearted in my house, me and mine refer to my scripts as Candy. It's been that way for some ten years. I even keep them in a tin pink Audrey Hepburn lunchbox my sister bought me for Christmas a few years back.
You have to laugh at that.
I didn't understand until it happened to me. My bad, Grandmother.
Gratefully love is just as experiential as pain. We cannot remember just how transformative either are until we are in their throes. Both have their own gifts and challenges and both are unavoidable once they have their mind set on us.
Ominous or somewhat endearing... you be the judge. Either way once they have revealed themselves to us, there is no doubting their existence.
We took the red pill.
This quote is a personal favorite.
I created this image on my way back from Vancouver Island, we are readying to dock in Tsawwassen on one of our B.C. Ferries.
#Royals; share your favorite quotes with us and we"ll do our best to make some fantastic graphics with our original images~
I do not think any of us doubt that we are blessed. Truly I am.
However there is no denying that this life, the #ChronicLife is different than my previous existence. It would be a lie to say it is something I would choose for myself. Though I have grown a great deal as a person through my experiences of pain and invisible illness.
The diagnostic experience is one I like to refer to as "Hurry up and Wait". For months the anticipation grows as we wait for answers from one specialist or another. The appointment comes but instead of answers, more questions are raised.
Tests scheduled for dates multiple moons away.
Follow ups with results further off still.
"Hurry up and wait".
Patience is a central life lesson.
The living and the waiting. The hoping and the treatments. The flares and the remissions. The pain and it's aftermath. We carry these things with us . It can take up a fair amount of our daily life.
For my girlfriends who don't quite understand, I liken it to a new mother on Facebook. New moms are up all night, have a strange new figure, a sudden fascination with bodily functions and a new found willingness to discuss them.
Migraine, Lupus, Fibromyalgia, and the spectrum of invisible illnesses can be just as all consuming, though we may post fewer pictures on Facebook than the average new mom.
It may indeed be far more glamorous to throw oneself in front of a cause than to experience chronic illness day by day. I grew up beside someone with Chronic Persistent Migraine never fully grasping their plight until parts of it became my own. I'm not advocating trying to force understanding out of others, but acknowledgement out of self. #Royals don't walk an easy path but it is a valuable one.
While I have watched my friends explore the globe, I explored interior worlds.
Self-knowledge is the beginning of all true understanding. It is the root of compassion, empathy and gentleness. So while we may not have asked for the crowns we wear, we can wear them well.
#Royals have taught me this over the years.
When our crowns feel too heavy to bear, we have a huge family to lean on.
Thus the reason I eternally remind you that you belong and we are always here for you.
It's one of the biggest benefits of belonging to a
something larger than yourself.
You are never alone.