Living with Lupus

An essay from the heart.

Let me start by telling you a story:

From Pinstripes to Poetry 

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 the 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 she had been diagnosed with a debilitating illness called lupus.

She was convinced that if her colleagues sniffed out her weakness, the corporate pack would abandon her to die an agonizing 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 the back of 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 keeping step with her increasing responsibilities. Sometimes, when she walked with a cane, she fabricated stories about being accident prone.

Meanwhile in private, 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 twenty-five 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 heard what these few simple lines of poetry were telling her. And she knew 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 thirteen years ago and I’m hoping for ‘happily ever after’ because I’ve never looked back.

At first I travelled a lot and was surprised to find the incredible parallel universe that hummed along each day, outside of the corporate towers. I joined creative writing classes, and participated in storytelling workshops. I volunteered at places like Ronald McDonald House and the Hospital for Sick Children. I even got a little goofy and took a series of Second City Improv Workshops, to get some creative juices flowing into my dried-out banker’s bones.

I looked into alternate therapies for managing my lupus condition and discovered the gentle 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 every day of my 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 later. 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. Today when I look back, my corporate life seems to have belonged to someone else.

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 the top ten things I’ve learned so far:

1. Only in California do 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 people and no one will make eye contact or offer help.

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 get it.

4. When people stare at how I cover-up from head to toe in summer to avoid the sun, they sometimes think I’m a celebrity in hiding.

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. Playing with my new i-Phone in bed, is the best medicine on a bad day.

8. Giving my pain a number from 1-10 helps me to cope and makes it simple for my family to understand.

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. Writing makes my body smile 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. And although we are together on this ride, and I understand the power of this chronic 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 almost twenty years and have learned to make room for it. 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. I look out each morning and give thanks for the peace in my heart.

I write something every day and spend time with my husband. I make up for long-lost days with my grown-up daughter, I read books, books and more books and spend as much time as I can with my nine-year old granddaughter. My family gives me more happiness than I could have ever imagined.

And with the wolf listening at my door, 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