The following post was written by June Hyjek, an award-winning author, speaker, wellness coach and scoliosis patient and advocate. Her books, meditations, and workshops offer hope and encouragement to people experiencing life’s challenges. She is the author of “Unexpected Grace: A Discovery of Healing through Surrender,” an inspirational story of her personal journey in dealing with scoliosis, and a meditation CD, “Moving into Grace.” June’s new book, “Being Grace: A Story for Children about Scoliosis,” shares the emotional consequences of having scoliosis through the eyes of Grace, a young giraffe who learns to accept the differences in herself, not just in others. More information can be found at APlaceOfGrace.net.
This is the second part of a two-part series. June Hyjek picks up right where she left off in the first installment.
“Life is what happens when you’re busy making other plans.”
That’s the first line in my book, “Unexpected Grace: A Discovery of Healing through Surrender.” (I believe it was John Lennon who said it.) I was so busy making plans to be the best trainer I could be, to help as many people as possible and to learn all I could about how the mind/body connection can create real healing physically and emotionally.
Then, my regular spine check-ups began to reveal some cracks in my spine. I was menopausal and my curve was getting worse again, breaking the fusion and cracking the bone above the fusion. Managing the pain became more difficult, especially with such a physical job, but the thought of quitting seemed worse than the pain.
I had more going on than the cracks. As is the case with many of us who have had scoliosis surgery, I had forward neck syndrome that caused some severe issues in the cervical spine – issues that needed to be repaired quickly. The spinal cord was impaired from C5 to C7, with no spinal fluid. The rest of the back had to wait. I needed neck fusion surgery and fast, and this would be the fourth spinal surgery. I was running out of vertebrae!
For each of my surgeries, my husband had given me a stuffed puppy, one that looked like our golden retriever. It was a symbol of love, comfort and support, his way of letting me know we were together in my recovery. The size of the puppy depended on the size of the surgery. So the one he gave me for my second surgery, which fused nine vertebrae, was about four feet long! For this upcoming surgery, though, he had another idea. Figuring I was collecting enough puppies, he gave me a stuffed, fluffy white kitten instead!
Although that surgery went well, the kitten didn’t stop the thoracic/lumbar fusion from continuing to break. After a very long year of allowing the neck to heal and dealing with the pain of a broken back, I was facing my fifth surgery. I had enjoyed the slight, but welcome improvement in my flexibility without the hardware in my back, which had been removed in my third surgery. Now, though, the rods had to be put back in. Those same rods that had broken inside me before. It didn’t seem like this would ever end.
I had always used imagery to help prepare me for surgery and aid in my recovery. This time, though, I couldn’t “see” anything beyond my upcoming hospital visit. That scared me. I later realized that it was because I had no frame of reference to comprehend what life was going to be like after the surgery. I had no idea.
When you go in for spine surgery, you sign a waiver that says you understand the risks – infection, paralysis, death. You never really believe it will happen. If you did, you’d never have the surgery! So I signed it, confident I would breeze through the surgery and recover fully. But as I said before, “Life is what happens when you’re busy making other plans.”
When I woke up from my fifth surgery, I couldn’t move my right leg. I had dural tears and was leaking spinal fluid into my brain. After two days of “hopin’ and wishin’” the tears would heal with immobility, I was scheduled for my sixth surgery. One risk factor down.
That surgery fixed the tears and, although it took a while, I was able to move my leg again. But, I began running a high temperature and having incredible sweats. I got hooked on watermelon Italian ice, just so I could cool off a little.
After a few days of this, with my doctor looking more and more concerned, blood work showed a staph infection. Surgery was needed immediately to clean out the bacteria before it could attach to the hardware. Another risk factor down. I was two for three.
Had I not been so sick, I would have been really scared that the next surgery would result in the third risk factor – death. As it was, I was unable to really understand what was happening so I signed that waiver yet again for my seventh surgery.
The surgery cleared the hardware, but even after months of IV and oral antibiotics, the infection spread to my bones. I have osteomyelitis. I have a lifelong reminder of what really can happen when you sign those waivers for surgery.
It’s been six years now, and my life has changed in so many ways. I understand completely why I couldn’t “see” beyond my surgeries. I had to give up the job I loved and work hard to learn how to handle the emotions we all experience when we go through a life challenge — fear, frustration, anger, invalidation, vulnerability. Through all that though, I felt as though I was slowly rising from the ashes, finding a new purpose.
The Buddhists have a practice called Tonglen, which teaches the Three Levels of Courage. The First Level is the recognition that I am not alone in my pain, and that others feel this as well, perhaps even someone I know. There are now 12 million people with scoliosis, with 500 more being diagnosed each day. I am most definitely not alone in my pain and I know many who feel as I do.
The Second Level asks that I may use this challenge and my pain as a path of awakening. Through all the surgeries, I sought to find the reason why I was going through this challenge. I looked for answers and used my experience to help me to learn and grow both physically and emotionally. I’ve learned much, and I’m still learning.
The Third Level brings the final realization and says that since I have this experience and feel this pain anyway, may I feel it so that others may be free of it. This is now my purpose. I’m not proposing the Buddhist religion, but the Tonglen perspective is helping me to create something good out of even the darkest times.
Although I still have the medical issues and pain to deal with every day, this new life of being an author and speaker allows me to reach other people who are dealing with scoliosis, as well as other life challenges. Through my first book, “Unexpected Grace,” I use the experience of my recovery from my last round of surgeries to try to offer comfort and hope to others facing difficulties in life and help them to find self-acceptance and peace.
But I wanted to reach more people. I wanted to find a vehicle to start the conversation about scoliosis and to help people to really understand that it’s more than just a curvature of the spine. I wanted to talk about what it’s like to be someone with scoliosis. So I wrote my second book, which also carries this idea of self-acceptance. In “Being Grace: A Story for Children about Scoliosis,” Grace, the giraffe with scoliosis, learns to accept her own differences and embrace her condition as simply part of who she is. Grace is me, and I try to be Grace — in more ways than one.
Through my journey of learning to live with scoliosis, I found that real healing, whether it’s dealing with scoliosis, or any other challenge we may face, comes from being completely comfortable with our circumstances and who we are. By removing the negativity of fear, anger and fight, our bodies can use the positive energy to do what we do naturally — heal. By allowing ourselves to be vulnerable, we discover that others and outside forces can’t hurt us, and we find the courage to take action and move forward. Coming into that place where hope lives, without the need to struggle or battle, we find peace. I believe that place is grace.
Are you living with scoliosis? We’d love to hear about your journey. Share your story in the comments below.