Why Sharing Your Illness Story Online Might Be a Good Idea

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Do you ever wonder why so many people share their illness stories online via personal blogs, various websites and social media platforms?

Do you ever ask yourself, who in their right mind would share so many personal details of their life on the internet, for crying out loud?

Yeah, me too.

And yet, like so many others, I do exactly that.

My cancer story began with my mother’s cancer diagnosis in 2004. Despite the fact she was diagnosed with an early-stage, low-grade, hormone-positive breast cancer (supposedly, the good kind), it went on to metastasize in 2007. Roughly six months later, she was dead.

Sandwiched in there, we learned she carried the BRCA2 gene mutation. That was in 2006. My family history is complicated. Whose isn’t, I suppose.

While still grieving and still contemplating genetic testing to see if I, too, carried the same BRCA2 mutation, along came my breast cancer diagnosis. I guess you could say, I contemplated a bit too long. I tested positive for the mutation too, btw.

Six months after my diagnosis, I started my blog, Nancy’s Point. Originally, I had intended to blog about grief and cancer from a daughter’s perspective.

Suddenly, I had a new cancer story to share about as well – mine.

From day one, I knew Nancy’s Point would be a blog about cancer and loss. It had to be. For a lot of reasons, the two are nearly one in the same.

I chose and still choose to tell unvarnished truths about cancer and loss, well, my truths anyway. And believe it or not, I have only scratched the surface.

So, why do so many bloggers (and others) share their illness stories online, and why do I share mine?

It’s all about connections. Humans like feeling connected to others going through similar circumstances. We seek out those connections in Cancer Land; too, and when we find them, we latch on to each other and hold on for dear life. Literally.

Following a traumatic event, there’s a desire to do something with the experience. To give back. To give the experience at least some kind of purpose.

Some feel inspired to create whether it be writing a blog or a book, designing jewelry, painting, taking up photography or whatever the case might be. Whether you are the creator, reader, listener or observer, there is nothing like the healing power of art.

Some are driven to change the status quo by turning into fierce advocates traveling the country, or even the world, working tirelessly to make things better and hopefully a little easier for others walking in, or who will someday be walking in, the ill-fitting shoes of cancer, or whatever the illness might be. Advocacy, too, most often begins with sharing stories.

Others need a place to “put” their cancer (or other illness) experience. Writing a blog, commenting on blogs or sharing on social media about your experience offers exactly that – a concrete place to put it.

Besides, everyone needs to vent now and then, right?

And for some, including me, it’s a combination of all the above.

But why am I still sharing my story and the stories of others?

That one’s a bit harder to answer, and after eight years, I sometimes wonder why myself.

I am still at it as much for myself as for my readers

There are many reasons why I keep doing what I do, I suppose. Some reasons, I can put into words and others I cannot.

Most simply put and for now anyway, I can’t imagine not continuing.

Sharing your illness story online makes you more vulnerable, and yes, there is potential risk involved. It’s the internet, after all; so, you need to set boundaries and think things through before sharing such personal matters.

But the rewards you will likely discover along the way outweigh the risk, at least, this has been the case for me.

It’s empowering to share our stories, possibly more than any of us might realize when we do.

The empowerment comes from each person’s process of sharing her/his unique story. But it also comes from the validation so generously offered by those who listen and bear witness to those stories.

Through sharing, we are all stronger.

What better reason to share could there be than that?


 


About the Author

Nancy Stordahl is the blogger behind Nancy’s Point and author of three books: Getting Past the Fear:  A Guide to Help You Mentally Prepare for Chemotherapy, Cancer Was Not a Gift: A memoir about cancer as I know it and Facing Your Mastectomy & Making Reconstruction Decisions. Learn more about them here.

The Story of St Brigid’s Day

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Today, 1st February is St Brigid’s Day in Ireland. If St Patrick is our national saint, then Brigid is Ireland’s patroness. Girls were traditionally named Mary or Brigid in days gone by in Ireland and as my own mother was called Brigid, I always felt an affinity to her story.

As a child, I always loved the ancient story of St. Brigid, who I viewed as a beautiful Celtic goddess.  Her father, Dubhthach, was a pagan chieftain of Leinster and her mother, Broicsech, was a Christian. It was thought that Brigid’s mother was born in Portugal but was kidnapped by Irish pirates and brought to Ireland to work as a slave, just like St. Patrick was. Brigid’s father named her after one of the most powerful goddesses of the pagan religion – the goddess of fire, whose manifestations were song, craftsmanship, and poetry, which the Irish considered the flame of knowledge.

Back in my school days we made the traditional  St Brigid’s crosses in class and I would take mine home from school to present to my own Brigid, my Mum.  The story behind St Brigid’s cross is that during one of her travels, St Brigid went to visit a dying pagan chief. As she sat near his bed, she picked up some rushes on the floor and began weaving a cross. When he asked her what she was doing, she told him about the meaning of the cross and this led to his conversion to Christianity.

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His Holiness the Dalai Lama being presented with a St. Brigid Cross on visit to Kildare, Ireland in 2011.

Making a St. Brigid’s cross is one of the traditional rituals in Ireland to celebrate the beginning of early spring. The crosses are made of rushes that are pulled rather than cut. They are hung by the door and in the rafters to protect the house from fire and evil. According to tradition a new cross is made each St Brigid’s Day, and the old one is burned to keep fire from the house.

Expanding Horizons #MIRoadScholars

Our dear friend and Global Village Storyteller, Dr Brian Stork, shared the story with us of his involvement in the Michigan Road Scholars program.  This unique program is a week-long opportunity for a diverse group of faculty to spend time away from their respective campuses and take a deep dive into communities around the State of Michigan.

You can read the full story here and learn more about the journey via Twitter @MichRoadScholar, Facebook, and Instagram.

Seven Layers Deeper

A poet meets a local farmer in an art gallery in the west of Ireland. Once a year, the farmer, who lives on the shores of Loch Corrib, visits the gallery.  The gallery owner introduces the two men.  The poet points out the intricacies and hidden symbolism of the paintings as the farmer listens intently. When the poet finishes, the farmer thanks him and tells him he has a wonderful eye, which is a special gift. In return, the farmer shares a story of his own special gift – Teannalach.

“I live beside the lake and you always hear the ripple of the waters and the sound of wind on the water; everyone hears that. However, on certain summer days when the lake is absolutely still and everything is silent, I can hear how the elements and the surface of the lake make a magic music together.”

A few days later, the farmer’s neighbour comes into the gallery. The owner, recalling the conversation between the poet and the farmer, asks the neighbour what he knows about Teannalach.  “Oh yes,” he says “They have that word up there. I’ve never seen it written down, so it’s hard to say what it means. I suppose it means awareness, but in truth it is about seven layers deeper.”

In the story, the gift of Teannalach, is a gift nurtured through daily practice. It’s rare, and also recognized and revered by others. The story, says, O’Donohue, “underlines the hiddenness of beauty, a beauty that dwells between the worlds which cannot be reached with known language or bare senses. It only reveals itself when the mind’s attention is radical and the imagination is finely tuned.”

 

Story adapted from John O’Donohue’s book, Beauty: The Invisible Embrace.

A Story For Nollaig na mBan

Nollaig na mBan is an old Irish custom, which goes back to the days when large families were the norm and men were not expected to help out with the women’s chores in the house. Tradition had it that each year, after the hard work of the Christmas festivities, their men folk would give women a break  from the housework on January 6th.

Mainly a rural tradition, women would go out to celebrate the day with their friends, sisters, mothers, and aunts. Although Nollaig na mBan is slowly dying out in many parts of Ireland, overtaken by Mother’s Day; in some parts of Ireland, the tradition is still strong.

Here’s a most wonderfully nostalgic story of Women’s Christmas from the Wise Web Woman blog – perhaps it will bring back memories for some of you of days long passed into the mists of time.

The day of the Women’s Christmas women were supposed to take it completely easy after all the hustle, bustle and hard work of the prior months, with the men now taking care of them and cooking and cleaning all day. I can assure you that this never happened in my house as, like many men of his era, my father didn’t know one end of a broom from the other and boiling a kettle was the peak of his culinary skill.

However, my mother was the eldest female of her family so consequently her sisters, sisters-in-law, aunts and mother came around on that day and a smaller, daintier version of the Christmas meal was served. On the menu were: a bird (usually a fine roast chicken), a smaller lighter plum pudding and a lovely cake, usually dressed up in the fanciest of pink wrappers with silver sprinkles everywhere on the pink and white icing. The most delicate of my mother’s tea sets was brought out, my own favourite, the lavender and pale green set. I would love to hold one of these little saucers up to the light and put my hand behind it, as it was so fragile you would see all your fingers through it.

Gifts were exchanged, usually the most feminine of presents, perfume or talc, bottles of Harvey’s Bristol Cream were lined up on the sideboard and the fun would begin. I was encouraged by the grandmothers and great-aunts to always give my mother a little gift on that day for the woman that she was and I did, from a very early age. I would buy something small in Woolworth’s on Patrick Street, a little comb or my personal favourite, those fiercely aromatic bath cubes, which were a whole three pence each. I would wrap it up in layers and layers of newspaper and it was always exclaimed over with the phrase, “Well now, I can hardly wait to use this”!

The coal fire would be stacked up high and already lit in the front room before anyone arrived, with Bord na Mona briquettes piled on the fender around it, and any male showing his face would be banished to some other spot in the house.

I remember the women gabbing all day and in the heel of the evening getting into the stories and songs of which I never, ever tired. My female cousins and I would sense the privilege of being included in all of this, there was a respect in us and never did we exemplify more the ideal of children being seen and not heard than on that day. Unasked, we poured the drinks and ran outside to boil another kettle to make a fresh pot or brought in the sandwiches and the fairy cakes and the chocolates and exotic biscuits in the later part of the day.

I remember the hoots of laughter as my aunts dipped their ladyfinger biscuits into their sherries, letting us have a small sample of the incredible taste. This was the one day in the year that I could get a sense of how the older women in my family were when they were young girls themselves. Full of fun and music and stories. I learned about their old boyfriends and who courted them, how one of my uncles had dated all four sisters before settling on my aunt. How wild he was and how she tamed him.

I’d learn of the sad miscarriages and the stillbirths, the neighbours who went peculiar from the change or the drink, the priests who got spoiled in Africa and became pagan; or who had the failing, the old great grandaunt who took on fierce odd after her son married. I didn’t know what a lot of it meant then but I stored it all away to ponder on in later years.

They would dredge up old musical numbers from their single days and sing a few bars while one or two got up and showed off their dancing legs. Sweet Afton cigarettes were lit and my grandmother would puff on her dudeen and we all could hardly see each other for the clouds of smoke.

Stories were told and they would get caught up on all the doings they might have missed in their conversations all year, obscure marriages and births, sometimes in Australia or other far flung and exotic outposts of the Irish Diaspora. But most of all I remember the peals of laughter which resounded throughout the house all day and evening.

A moment would come in the midst of all the hilarity when the time for a spot of prayer came. Out of the big black handbags that never left their sides would come the rosaries. These would be threaded through their fingers and all the heads would bow in unison. I never knew the prayer and haven’t heard it since but it was to St Brigid, the women’s saint of Ireland, and it involved her taking all the troubles of the year before and parking them somewhere in heaven and thus they were never to be seen again. This was followed by a minute of silence (while St Brigid did what she was asked, I have no doubt), then a fervent “Thanks be to God and all His saints” and a reverent kiss on the cross of the various rosaries which were all tucked away carefully into the handbags again. Then the glasses of sherry or the cups of tea were refilled and the whooping and carrying on would begin afresh, the bothers and griefs of the past year now permanently banished and forever.

Image: rjnagle via Flickr

What I Learned From Nelson Mandela #MandelaDay

DE_uzuXW0AAjenj.jpgThe soundtrack to my teenage years in the mid-eighties was filled with The Specials Nelson Mandela protest song; in school I spoke as captain of our debating team about the evils of apartheid in South Africa, and I witnessed the strike by 12 workers at Dunnes Stores in Dublin who protested for two and a half years, for the right not to handle goods from Apartheid South Africa. The dispute started when Mary Manning, a 21-year-old cashier, courageously refused to handle fruit from apartheid-era South Africa. Mary and her colleagues became a household name in South Africa and Mandela said that their stand helped keep him going during his imprisonment.   Many years later when on honeymoon to South Africa, I had the opportunity to visit Robben Island where Nelson Mandela spent 27 years of his life in exile.

Nelson Mandela became for me and will remain the most iconic figure in my life time. In the eloquent words of Barack Obama he was a “man who took history in his hands and bent the arc of the moral universe towards justice.” The impressions made on us when we are young have such profound and lasting effects that it feels when something connected to that time is lost years later, that we also lose something of our youth. But it can also be an opportunity to reconnect with our youthful idealism. I am reminded of this again today, International Nelson Mandela Day, reading his quotes:

There is no passion to be found playing small – in settling for a life that is less than the one you are capable of living ~ Nelson Mandela 

It is what difference we have made to the lives of others that determines the significance of the life we lead. ~ Nelson Mandela

Do not judge me by my successes, judge me by how many times I fell down and got back up again.~Nelson Mandela

Our world is a poorer place for Nelson Mandela’s passing, but a far richer and better place thanks to his life –  a reminder to us that we are capable of so much more in our lives and no longer settle for playing it otherwise.

Global Storyteller: Scott Kolbaba MD

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This week’s featured Global Village storyteller is Scott J. Kolbaba, MD.

A doctor of internal medicine in Wheaton, IllinoisDr Kolbaba is the author of Physicians Untold Stories: Miraculous experiences Doctors are hesitant to share with their patients, or ANYONE. Today we are featuring an inspirational story from the book.


The Dime

Stephen J. Graham, MD

            I wondered if the unusual tattoo on John Walters’s arm might be related to the sadness in his eyes. He was seeing me in the emergency department for abdominal pain. I was initially hesitant to ask him about the tattoo, but curiosity got the best of me.

“Is that a coin?” I asked, pointing to his forearm.

“Yes,” he said.

“That’s a little unusual,” I said tentatively, not wanting to offend him.

“It’s a dime,” he said. “I did it for my son, Robby.”

He paused and took a breath. I soon realized why I had struck such a deeply emotional chord.

“He was killed,” he said as he stopped again to compose himself. “It was terrible, an accident on the expressway over ten years ago. He was my…only son. He loved coins and had an incredible coin collection. We would go through the change together to find the pennies, nickels, and dimes for his collection books. My wife and I would give him the rarer coins for his birthday and Christmas. His favorite collection was dimes, and he had an unusual knack for finding them everywhere. We would go to a Cubs game, and he would find a dime under his seat or on the sidewalk outside his favorite storefront Christmas window. Whenever we did anything special together, he would find a dime. It was really uncanny.

“I know you probably won’t believe this, but after he left us, I started finding dimes too. Anytime I do something that would have been special for him, I find a dime—vacations, dinners out, sporting events. They appear on the floor, under a plate, or anywhere. I can almost count on it now, and I think it’s his way of communicating. He looks out for me, like my guardian angel. I wanted Robby to know that I knew he was there, so I put this tattoo on my arm. If you look at it, the year is Robby’s birth year, and his name is right here, R-O-B-B-Y.”

“That’s a touching story,” I said, trying not to show my skepticism, while at the same time wishing it really was true. But it was true for John, and that was the important thing.

After I finished his exam, John went for a CT scan, which revealed a minor infection.

“I have good news,” I told him after the radiologist called with the report. “You won’t need to be admitted to the hospital. It’s a simple infection. I’m going to give you some antibiotics, and you need to follow up with your regular physician in three days. Oh, thanks for sharing Robby’s story with me,” I said as I turned to walk out of his room.

“I had a feeling you could help me,” he said. “Thanks.”

John’s story resonated in my mind, but I still couldn’t get myself to accept that a loved one could communicate from the other side.

I made my way back to the doctor’s dictation area where patients have no access. As I sat down at my computer to complete his notes, something on the floor caught my eye. I reached for it. A dime!

A sudden eerie feeling came over me. Then I smiled.

“Thanks, Robby,” I said under my breath, “for looking out for your dad…and for helping me believe.”

 


Storyteller Bio

unnamed-10After being awarded a degree in economics from Cornell College and serving with the Marine Corps Reserves, Scott Kolbaba completed his medical degree at the University of Illinois and graduated with honors. He interned with Rush-Presbyterian St. Luke’s Medical Center and completed his residency at the Mayo Clinic. He is a member of the Alpha Omega Alpha Honor Medical Society.

 

Visit www.physiciansuntoldstories.com  or order his new book at Physicians Untold Stories: Miraculous experiences Doctors are hesitant to share with their patients, or ANYONE on Amazon now.

 

Happy New Year!

 

As wjod.jpge contemplate the first blank page of this New Year, we are excited to anticipate how you will fill the pages of the next twelve months with your stories.  We’d love you to share those stories with us here so that we can continue to build a community resource for anyone interested in the power of storytelling.

This year will be a big one for the Global Village as we grow and expand our network and we are looking forward to growing alongside you in the coming year.  Please help us grow our community by connecting with us on Twitter and Facebook. And do get in touch and let us know how how we can help you grow a storytelling culture in your organisation in 2017.

Here’s to a super new year of storytelling!

Related Reading

The Power of Storytelling: Why Stories Matter 

A Story About Telling Stories

From The Middle of The Story