by Amy Newmark
As the weeks progressed, I began meeting other program goals, but I still had the theme park to conquer. It frightened me to risk a whole day on my feet. It wasn’t just me that I would disappoint; my family also wanted this so desperately for me.
The day finally came, and we ventured off to SeaWorld. As we walked into the park, the sun was shining and there was a cool breeze. Over the speakers, Rachel Platten’s “Fight Song” played. “This is my fight song, take back my life song…” she sang. Tears glistened on my cheeks, and my husband looked at me with concern. Our teenage daughter saw the worry in his eyes and glanced at me. When we shared a knowing smile, my daughter reached for my hand and said, “Don’t worry, Dad. That’s Mom’s song.”
In the early days of this leukemia journey, she had forgotten something at home after leaving for school and had found me balled up in bed, crying from the pain, with “Fight Song” on repeat. I told her it was my anthem and reassured her that I would be fine eventually. She gave me a hug before returning to her father’s waiting truck. Apparently, she hadn’t told him about that.
I walked from show to show that day. I climbed stadium stairs with purpose. I offered to get the food while my family saved us a table. I walked around the park practically overflowing with accomplishment. I was so proud that you would have thought I had run a marathon. In a way, I had. Walking my way back to a life not controlled by fatigue was an exercise in perseverance. Every day, I tried to go a little farther than I had the day before.
My body cooperated on some days and let me down on others, but I kept going. Through my walks, I began to see myself as an unstoppable force. Yes, cancer was and is a part of my life, but I will not let it be the prime descriptor of who I am. Walking gave me my life back and changed the way I saw myself. Even now, when I have a difficult task ahead of me, I remind myself to just put one foot in front of the other.
— Amy Michels Cantley —
Creating a New Story
That last page turned is a perfect excuse to write a whole new book.
~Toni Sorenson
When the Woolsey Fire first began in Southern California in November 2018, I didn’t think I had much to worry about. After all, it was a good twenty to thirty miles away. It would have to jump a freeway and spread through miles of canyons to get anywhere close to my Malibu home.
With that in mind, I happily went off to a dance class thinking all was safe. By the time class was over, I had received three recorded mandatory evacuation alerts on my cell phone. I barely had time to race back home and grab my dogs, laptop and my mother’s jewelry before driving away. I lived with friends and in hotel rooms for days, glued to the TV, desperate for any news about my little piece of paradise by the sea. Finally, I got word that my home had burnt to the ground.
After the mandatory evacuation orders were lifted, I grabbed a friend (for moral support) and drove through the blackened canyons and up a twisty road to where my home once stood. It was a modest house, built in 1980, but it had a glorious, peaceful view of the Pacific Ocean. Seeing the charred ruins of what had been my sanctuary for eighteen years broke my heart.
Now what? I was grateful that my dogs and I had survived, but now I had literally nothing but the clothes on my back.
Well-meaning friends and strangers tried to comfort me by saying that what I lost was just stuff. I had to bite my tongue, for I knew, deep inside, that wasn’t so. Finally, when a friend said those words yet again, I couldn’t hold it in any longer. I burst out, “It’s not just stuff! It’s my mother’s portrait. It’s the American flag given to honor my father, a World War II vet, at his funeral. It’s the first picture of my sister as a baby.” My friend stared at me for a long moment, and then said, “Oh, you lost your story.” He was right. He totally got it.
And almost immediately, I had a knee-jerk reaction: It’s time for a new story.
With that realization, everything changed. Oh sure, I cried. I still cry. I had nightmares, and there were days when I would have loved nothing more than to hide under the covers and stay in bed. But when I started to see how wonderful people were, dear friends as well as perfect strangers (which has forever changed my definition of “perfect stranger”), I realized that I may have nothing in terms of “things,” but in truth I have everything.
With so many people displaced by the fire, finding a place to stay for months (or possibly even years) was a huge challenge. A week after the fire, I went to my usual ballroom lesson. I was in the parking lot when a woman in my class who had heard about my loss approached me. She said that she owned a rental property, and the tenant had just left that morning. Did I want it? My jaw dropped. After recovering, I asked, “How much?” She quoted a price that I couldn’t afford, but then she decided to drop it substantially. I moved in the next week.
The fire happened in November, and Christmas was right around the corner. While at a Sunday service, a fellow parishioner, whom I had never really met, came up to me with a huge box of holiday ornaments and lights. She said, “I’m pretty sure you don’t have any of these. I want you to have a happy Christmas.” I cried tears of joy.
Other people helped me write a new story. My ballet teacher made sure I had slippers until I could get my own. A woman at the local CVS who overheard me struggling to get a prescription refilled for a medication that had been lost in the fire offered to buy me anything in the store. Her kindness was sincere and will forever touch my heart. I experienced countless examples of these acts of compassion in the months following the fire.
Creating a new story isn’t easy. It’s tempting to dwell in the land of “Why me?” That’s a sure path to depression and misery. I loved my home of eighteen years and all the memorabilia of my entire life that it contained. They will always be in my heart. I know, however, that if I’m going to live the rest of my life to the fullest, I have to look forward. By appreciating what I have today and surrounding myself with people who care, I am creating a new story, even in the most difficult of circumstances.
— Dr. Noelle C. Nelson —
What’s Next?
Once in a while, it really hits people that they don’t have to experience the world in the way they have been told.
~Alan Keightley
I had recently become single again and the world was my oyster! Monday through Friday, I was the director of a fledgling nonprofit working for social justice in the local community. On Sundays, I was organist and choirmaster at a small Episcopal church. Other than that, my life was mine to change as I wished.
I had left my former life with little more than an armful of clothes and my blow dryer, so I was truly starting with a clean slate. I loved my new apartment, which looked down on a duck pond. I decorated the window with lace curtains and filled the balcony with plants. At the age of fifty-one, I was as giddy as a young woman furnishing her first apartment. I dreamt of the possibilities my new life would hold. This was my time!
A mere six months into my new life, Christmas arrived, bringing with it my annual cold. When I still had my cold two months later, the doctors couldn’t figure out why. They chalked it up to stress.
By February, all I could manage was work and basic self-care. I was falling asleep at my desk and at stoplights! My cute new apartment was a mess. Then one morning, after taking a shower I was too weak to dress myself. I called a friend, who took one look at me and called 911. Fourteen days later, I emerged from the hospital with a diagnosis of systemic lupus, kidney disease, and autoimmune hemolytic anemia.
As sick as I was, I was determined to return to work. I refused to give up on my dreams and surrender my independence. Soon, I had no choice. By May, the rector of the church announced that I was being let go as the organist and choirmaster. He wished me well and encouraged me to concentrate on my higher-paying job. By September, the pastor at the church that hosted the nonprofit informed me that there was no money to fund my position.
Now I was sick, jobless and alone. A month later, a kidney biopsy confirmed class
V, membranous lupus nephritis. The treatment? Chemotherapy. I wept.
As I went through treatment, I spent my days and nights in excruciating pain and profound exhaustion. Every night, I put my head on the pillow, praying that I wouldn’t wake up. I couldn’t work. My identity was gone. I was eating through my meager retirement savings just to keep a roof over my head. Why go on?
I still had enough presence of mind to realize that I needed professional help. An appointment with a psychiatrist was anything but helpful. He just didn’t get it! I was so angry with him that I was propelled into action! I’m going through this, I thought, and other people have gone through it, too. Some of them made it to the other side. Some of those people wrote books. I will find the books. I went directly to the library. I learned about lupus. I learned about chronic illness. I learned about grieving for lost identity, hopes, and dreams.
I learned that what I think causes what I feel.
As my wounded spirit healed, my health improved. And then a low-stress church job opened up, and I jumped at the chance. I had been volunteering for a lupus organization and I was offered the position of part-time program director, so I took that, too. I became a master trainer for Stanford University’s Chronic Disease Self-Management Program. I added another part-time position as pastoral musician in a school. Now I was very busy. I had purpose and my life had meaning. I also had some money!
But lupus never goes away. Thirteen years after my initial diagnosis came a crash far worse than the first. Profoundly anemic, I needed four blood transfusions. This time, I got a blood clot. As I lay in intensive care, I periodically roused myself, waved a finger in the air and said, “This is not my first rodeo. I got better before. I will get better again. If you are going to treat me, you must believe this, too.” On the seventh day, I was discharged. I spent the next two days training community leaders in chronic disease self-management.
Periodically, lupus makes dramatic intrusions into my life. Each time, I bounce back faster. I work half time at a school and freelance as a musician on weekends. I blog and create online courses, and I am launching a podcast and YouTube channel. My third book is nearly complete. In that book, I offer daily reflections for living well with chronic illness based on more than fifteen years of personal experience. I found purpose when I decided to “make my mess, my message” and hold the light for others on this journey.
What did those books teach that enabled me to reclaim my life? I learned that what I think causes what I feel, and that those feelings impact my physical health. I can observe my thoughts and choose thoughts that better serve me.
Early in my lupus journey, I embraced a negative explanatory style. Lupus was pervasive, personal and permanent. I was hopeless and helpless. That one encounter with the psychiatrist flipped the switch, leading me to embrace a positive, explanatory style. I embraced the challenge, made a personal commitment to live well with lupus, and took back control of my life.
Once again, the world is my oyster, full of new adventures, challenges and possibilities.
The question isn’t “Why did this happen to me?” It’s “What’s next?”
— Linda Ruescher —
Good Morning, Five Toes
You teach people how to treat you by what you allow, what you stop, and what you reinforce.
~Tony Gaskins
I looked down at the hospital bed where my leg used to be and resisted the urge to hold my breath and ball my hands into fists. Instead, I let the pain wash through me as I focused on my husband’s hand resting where my leg should have been. Whatever they had given me for pain wasn’t working. How could something that wasn’t there be so excruciatingly painful?
“Please, just massage it for me,” I begged. “It hurts so much!”
He ran his hand up and down the bed where my leg should have been in an attempt to ease my phantom pain. Oddly enough, just watching his hand slide along the crisp sheets as he rubbed my missing limb made me feel better. I was thirty-two and had just lost my entire right leg, hip and pelvis to bone cancer.
Now what would I do?
The two-legged me was a hairdresser, reflexologist, mother, wife, sister, daughter, and friend, and I couldn’t help feeling that my life as I knew it was over. I had to redefine myself as a one-legged lady and find something that gave me purpose. If I was going to survive cancer, I promised myself that I would never waste a minute of precious time ever again.
Two weeks after my surgery, I was recuperating at my parents’ home. My husband couldn’t afford to miss more work, and I needed help just to get in and out of bed let alone look after our energetic three-year-old. The phone rang. My long-time friend had been admitted to the hospital for a ruptured appendix and had developed peritonitis. They didn’t know if she would survive. I knew I had to go see her… and possibly say goodbye.
I thought it was fitting that my first trip out of the house as an amputee would be to see a sick friend in the hospital. If I fell, I’d be in good hands there. My mom drove me to the hospital and came inside with me to lend a hand and carry my full-length winter coat. It was too hot to wear it in the hospital, so Mom draped it over her arm, which also made it easier for me to walk using my crutches. The visit went well, and my friend eventually recovered, but I was proud of myself for making the effort to go see her.
As I made my way through the hospital, I was prepared for looks of curiosity, empathy, sympathy, and even shock. But the one thing I had not prepared myself for shook me to a depth I had never experienced before. Two young children, about six or seven years old, were playing with toys in the hospital lobby. As I passed by on my crutches, they looked up at me, and I flashed them a smile. They didn’t return my smile. Instead, the little boy pointed his chubby, little finger at me and started to laugh. “Look, everyone! Look at that lady!” It seemed to me he was shouting loud enough for the entire hospital to hear. “She only has one leg! Doesn’t that look funny?”
Both of the kids howled with laughter. Heads turned, and I felt the blood rush to my face. I couldn’t speak. I put my head down and rushed out the door as fast as I dared on my crutches, not even stopping to put my coat back on. I felt the tears coming, and I held them back until the car door closed. I slumped into the passenger seat as Mom slid into the driver’s seat. I started to sob. “How could they think this is funny?”
Mom tried her best to comfort me. “Honey, please don’t cry,” she said softly, looking almost as upset as I felt. “They are just kids. They don’t know any better.” Her words struck a chord in me, and my tears stopped as I felt the steel return to my backbone.
They were just kids, but that did not excuse their rude behaviour. I lifted my head to meet my mom’s eyes, and I felt a wave of conviction flood through me. I knew what I had to do, what my purpose would be. “Well, someone has to teach them!” I said. And I knew that someone would be me.
As my strength returned, my conviction never wavered. I decided that when I was well enough, I would visit elementary schools and talk to children about being different. It is okay to ask someone why they look the way they do, but it is never okay to laugh at them because they are different. Thirty years ago, there were no anti-bullying programs and not really even a name for what I was doing. I was teaching children to be respectful of people who are different and teaching them that everyone is different in their own way. People come in all shapes, colors and sizes. We are each special and unique. How dull and boring it would be if we all looked and sounded the same.
Kids are like little sponges. They absorb new thoughts and ideas easily. It was an honor to touch their little lives with a big truth — a truth big enough to carry into adulthood. The strangest thing is, in the thirty-plus years since I became an amputee, I have never had another child laugh at me like that. I truly believe that those children were there for a reason. They were sent to push me in the right direction in order to find my purpose. Sometimes, our true purpose in life is found through the hardest lessons.
Spe
aking to children was just the beginning for me. I volunteered for the Canadian Cancer Society, The Terry Fox Foundation, Optimist International, the YMCA and even the March of Dimes. The word “no” was not in my vocabulary back then, and whenever someone asked for my help, I gave it gladly. My husband would laugh because he said it was hard for people to say no when a one-legged lady walked up to their door on crutches collecting for the less fortunate!
I became an inspirational speaker and author. I learned that being grateful for all the parts of me that were still intact was the only way to start and end each day. Teaching that attitude of gratitude to people of all ages and sharing my story in a book I wrote called I Am Choosing
to Smile has given my life a purpose I never dreamed of when I had two legs. I do, indeed, choose to smile every day. Waking up in the morning, I look down at my one foot that is remaining and say with all sincerity, “Good morning, five toes. I’m very glad to see you!”
— Glenda Standeven —
That Smile
It’s your reaction to adversity, not adversity itself, that determines how your life’s story will develop.
~Dieter F. Uchtdorf
It began with a phone call that no parent wants to receive. “Your son is in the hospital with a broken back.” Jay was not a child. He was almost fifty and a professional trumpet player for the Army’s 3rd Regiment Old Guard Fife and Drum Corps.
Jay was hurt in a freak BMX bicycle accident on an indoor track in Pittsburgh, Pennsylvania. To make matters worse, my wife Margaret and I lived 2,500 miles away in California.
Margaret booked a flight so we could be by Jay’s side. We arrived after his emergency surgery at a Level I trauma center to learn that he had suffered a concussion, broken collarbone, broken ribs, and a crushed cervical spine with paralysis from his upper chest down.