Four years ago, I had this wild idea to write my first book. How hard could it be?
I started my website, pajamadaze.com, for the chronic illness community in 2012. I blogged about my experience with chronic conditions, some since birth (asthma, allergies), others that crept stealthily into my life over time (osteoarthritis, migraines, vertigo, joint subluxations), and later in life, a sudden bout of heart attacks, chronic fatigue syndrome and the diagnosis of a rare disease (fibromuscular dysplasia).
Eventually, I connected with followers on social media and invited them to contribute their blogs, photos of artistic creations, useful links and books for review, and my website along with its social media presence blossomed into a tapestry of rich material that was nominated for awards almost every year since.
Through my connections with these folks, I found a wealth of information, experience and inspiration waiting to be tapped. I envisioned a collection of inspiring personal stories of lives that were recreated after diagnoses of devastating illness.
I could also picture a compendium of essays sharing knowledge and advice on living better with limitations. It was 2015.
Three years later, “When Bodies Break: How We Survive and Thrive with Illness and Disability” was published on Amazon. The three years between conception and execution held incredible challenges, and it truly is a miracle that the book got published.
The process of rounding up submissions from project participants was long and arduous. Several became seriously ill; some were hospitalized; a couple almost died. Some forgot deadlines, especially those suffering brain fog from myalgic encephalomyelitis and fibromyalgia.
Disruptions shoved the project to the backburner for others. Deadlines got swept off the table. Trying to organize anything around chronic conditions, especially LIFE with one, is like herding cats.
Once the submissions were in, it was my turn to write my story and essays, edit the submissions and put it all together. It also became my turn to jump over hurdles of crises.
I had been caring for my elderly father when he suddenly went into a downward spiral and passed away; I had to juggle the remnants of his life along with the grief. My health turned wonkier. I lost my apartment and moved in with a friend. I tried to work on the book but failed miserably in my efforts.
I gave myself two years after my father’s passing to create a new direction for myself and create space to finish the book. I decided to move to New Hampshire to be closer to family and good medical care.
I discovered the small-town sweetness, the breathtaking beauty and the vortex of creative energy that is Peterborough, and I knew I was home.
The day I arrived I received a phone call from my brother-in-law. My sister, who had multiple sclerosis and other painful conditions, had been suffering intensely and was finally taken to a doctor. She was refused pain medication. She went home, closed the bedroom door and took her own life.
My heart had long been broken as her health deteriorated. This crushed the shattered pieces into sand.
Five days later, I had a biopsy on my breast. Two weeks later, I was diagnosed with invasive and aggressive ER-, PR-, HER2+ breast cancer. I began chemotherapy and targeted treatments.
Meanwhile, I developed an extreme herniation and bulge in a disc that strangled the nerves passing through it, causing severe pain and loss of function in my right leg. I had to stop chemo for a month to have back surgery. On my 64th birthday, I had a lumpectomy and then came radiation along with the continuing targeted drugs.
Chemo brain impacted dramatically my ability to think and fatigue weighed me down like I was underwater. I did the best I could to complete the manuscript. I put a call out on Facebook for assistance with formatting and publishing.
The book was finally published in December 2018 and I finished cancer treatments July 16, 2019. I’ve been asked how I was able to function during a period of such tragedy, chaos and challenge.
I wept, I got angry, I blamed, I denied, I floundered. But I decided not to stay there.
I embraced the sadness, the fear, the trauma and darkness; I felt them fully then let them go to be able to embrace the joy and grace that each day has to offer. I took good care of myself. I then had renewed energy to create a new life in my new home.
Chronic illness, pain, fatigue and disability take a lot away from us. But there is a gift: learning to survive and thrive through resilience.
That’s what this book is about. Our stories may be different: We come from various countries and backgrounds, we suffer from a spectrum of diseases and levels of pain, our life situations vary. But there is a common thread in our stories — resilience — and that is what ties us together.
We folks with chronic conditions, especially diseases invisible from the outside, are some of the most misunderstood members of society. If you do not have chronic illness or pain, you can’t understand fully what we go through.
Though this book was written to assist someone newly diagnosed or a longtime sufferer who is struggling, it can help family members and others to understand more deeply what we experience. This book can help lift your life with chronic conditions to a new level of self-care, empowerment, joy and fulfilment. It can also help others help you.
Please come to Toadstool Bookshop in Peterborough Saturday, Sept. 14 at 2 p.m. to meet me, discuss “When Bodies Break” and have your copy signed. As a special treat, we will enjoy the healing harp music of Susan Graham. Learn more at toadbooks.com/event.