LIVING WITH LUPUS | Pat Skene

From Pinstripes To Poetry: A Storyteller’s Journey with Lupus

Story by Pat Skene

Let me start by telling you a story.

Once upon a time not so long ago and not so far away, there was a little girl who became a banker. For years, she scaled the corporate walls to become vice-president at one of Canada’s largest banks. She loved her job! Heck, she was her job! Why would she ever think of leaving?

She travelled extensively, wore the latest designer suits and added endless zeros to her ever increasing bottom line. As a female executive working in a male environment, she had a lot to prove. And dammit, she spent years proving it! But most of all, she was determined that no one find out that she had just been diagnosed with lupus. She was convinced that if her colleagues sniffed out her weakness at this stage of her career, the corporate pack would leave her to die a horrible death in the concrete jungle. So she fought hard to hide her lupus flares and fatigue, in a kingdom where only the mighty survive.

Through it all, she secretly dreamed of becoming a writer someday. But the growing number of stories and poems she kept in a wooden box in her closet, were gathering more dust with each passing year. She wondered if that someday’ would ever arrive, as she worked relentlessly to keep step with her banking comrades. On the outside, she was the picture of good health and efficiency, but on the inside, she was slowly fading away. The charade was exhausting!

So for years she continued through the good and bad days, and the little girl banker never thought much about life outside of the boardroom walls. But over time, she was having more difficulty managing the increasing pain, which seemed to be commensurate with her increasing responsibilities. She had resorted to walking with a cane, which she humorously tried to explain away to her colleagues, while her nosebleeds were gushing out of control. Exhausted, she would sometimes sneak off to the office quiet room to lie down and rest, before facing the fog of another meeting. But still, after 25 years of banking, she was at the height of her career and giving in to this disease just wasn’t an option.

Then early one morning everything changed. She was at home quietly drinking a cup of tea, when a poem suddenly took shape in her head. She slowly began to write it out, line by line. As she digested the words coming straight from the warm in her heart, she realized what these few simple lines of poetry were telling her. It was time.

It was time to listen to her body from the inside out. It was time to leave the raw-bone stresses of her job. It was time to let go of the ego-laced bonuses and six figure salaries. It was time to pull out that dusty wooden box and follow her passion for writing. It was time to take care of herself, before it was too late.

Without hesitation and feeling naked as a pinstriped suit without a business card, the little girl banker grabbed hold of her dreams. Then, warmed by the wisdom in her heart, she took a deep breath and leaped into the future, where she lived happily ever after.

The end.

Well, not exactly the end, but that was me six years ago and I’m hoping for happily ever after because I’ve never looked back.

At first I travelled a lot and marvelled at the incredible parallel universe that hummed along each day, outside of the corporate towers. Who knew? Then I took the time to learn new things and joined writing classes and storytelling workshops. I volunteered at places like Toronto’s Ronald McDonald House and the Hospital for Sick Children. I even got a little goofy and took the Second City Improv Workshops, to get some creative juices into my dried-out banker’s bones!

I looked into alternate therapies for my pain and discovered the incredible healing qualities of Homeopathy. I rested more, read more and laughed more – a lot more. Shortly after the first year of my retirement, I was walking without a cane and loving life!

So it didn’t take me long to start having fun with my writing career too. I wrote for various newspapers and magazines and had my first children’s book published a couple of years ago. I continue to develop stories for children and I especially love writing in rhyme. During my visits to schools and libraries the kids giggle and bounce along with me, as I recite my rhyming tales. I feel exhilarated by the energy that children give me during these visits. It’s only been a few years, but my old life seems so far behind me.

But as with most lupus patients, I’ve had my ups and downs with the disease. Living with lupus is an ongoing project and I’m still learning new coping skills and lessons each day.

Here are 10 important things I’ve learned:

1. In California people think I’m cocking a shotgun, when I snap open my folding cane in a crowd.
2. Always carry a wad of tissues, because my nosebleeds scare everyone except my family.
3. When I tell people I have lupus, they often don’t know what it is and when I explain it, they still don’t understand.
4. When people stare at how I dress in summer, they wouldn’t if they knew why.
5. My husband loves being with me in the shade more than fishing in the sun.
6. My daughter and granddaughter are the real sunshine in my life.
7. Singing on my lawn swing is the best medicine on a bad day.
8. The list of things I can do is much longer than the list of things I can’t.
9. When I say no to the things I don’t want to do, and yes to the things I do – I have less pain and I sleep better.
10. When I write stories for children, my body smiles a lot on the inside and it shines through to the outside.

Learning how to accept this disease and respect the part it plays in my life has been a slow lesson in survival. But like anything of value, I had to earn the right of passage and work my way through the labyrinth of trial and error. Although we are together on this ride and I respect the power of the illness, for me it will never take the front seat. I embrace it as part of who I am, but it is not what I am.

I’ve lived with lupus for over twelve years and have learned to make room for it in my life. But I’m always careful not to give it too much space. Even as I write this story, it’s more important for me to talk about how lupus has affected my choices and how I live my life because of it, rather than to talk about the disease itself.

I look back at my incredible journey and I realize that in a strange way, lupus has contributed to my happiness. I don’t wish to be disrespectful to the many lupus sufferers out there, who battle this debilitating disease every day when I say this, because each experience is a personal one. But finding myself through the eyes of this disease, made me stop the breathlessness of my life and helped me to bring my true priorities into focus. It taught me to value each day with a newness and gratefulness I have never experienced before.

Today I remain mindful of my limitations, but more than ever, I am aware of the many new joys in my life. My husband and I left our home in Toronto a few years ago and now live in the beautiful town of Cobourg, Ontario. I look out each morning and marvel at the serenity here and give thanks for the peace in my heart. I write something every day, volunteer in the community and spend time with my husband. I make up for lost days with my now grown-up daughter and friend, who has given me the chance to experience my new granddaughter with more delight than I could have ever imagined.

And, with the wolf listening at my door, I’m thankful for the opportunity to share the magic in my heart through the poetry of my stories. I’m not sure what the future holds, but today I’m having fun and who knows – I just might live happily ever after, after all!

Pat Skene is a retired CIBC vice-president, where she worked for 25 years. Her first children’s book, The Whoosh of Gadoosh won the 2003 Benjamin Franklin Award in the US and has been optioned for an animated TV series. Pat is widely published in newspapers and magazines and writes a story-column, Rhyme Stones for Kids, which appears monthly in newspapers across Ontario.