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.
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.
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life is what happens when you are busy making other plans is a very inspiring quote and it's the perfect way to start such article. healing is not only about surgery and medicine, is about the life we have and the way we choose and the way we understand to live it. Thank you for being a great example!
Thank you Adrian! I've found that if you make fewer plans and just remain open to possibilities, exciting things happen!
I have scoliosis in my left lower back /C shape. Last year experience a spinal compression /lower lumbar . Had to have a Kaylon Plastic procedure done,but since I have numbness in the right hip sometimes .. I have been thinking about getting accupunture treatments ,because I believe in Chinese medicine.....
I'm a believer in eastern medicine complementing western medicine. Anything you can do to create an optimum healing environment in your body will help the body to do what it does naturally -- heal. I've tried acupuncture, but didn't like it and found acupressure to be more effective for me. Regular massages can also make a big difference. I'm also a big believer in meditation.
My grandaughter...Grace!!!.. is a tall 14 year old who has worn the restricting back brace plus recommended exercises for the last 2 years .Unfortunately she had a 49deg "S" curve when she was first diagnosed and after dedicated treatment the curve has progressed to 53 deg and the specialist has recommended rod surgery as the only solution.
We are devastated with this news of course and would be grateful for any suggestions.
Many people in very similar situations have successfully avoided surgery through the CLEAR protocols! It is possible to reduce and stabilize a 53 degree curve to below 40 degrees, which is the cut-off point for surgery.
Tell Grace that Grace the Giraffe says hello! I'm actually surprised they're recommending surgery at 53 degrees, unless breathing is impaired or she's having serious complications. My understanding is they wait until the curvature is in the 60s. Dr. Josh is right. The CLEAR protocol can help her, and realistically avoid surgery altogether. Had this been available to me, I may never have had to go down this path. For me, I would have tried anything and everything else before surgery.
Hi Denise,
I am writing from Mumbai, India.
We discovered that our daughter had scoliosis in Aug 2013 with a Cobb's angle of 56 deg. Since then we have been doing exercises for last nearly 4 years along with yoga (to start with) and Ayurveda (herbal massage and a few common Ayurvedic medicines) and protein-rich healthy diet. Our daughter is now more or less normal. While I have not got an X-ray done since 2014 (and do not intend to till we get to a straight spine) when the Cobb's angle read 40 deg., based on my physical examination I can say with reasonable confidence that her Cobb's angle should be under 20 deg. It is real hard work and calls for significant discipline in maintaining the correction during the day. The last 2 years or so we have been working mainly on the ribs having corrected pelvis, shoulder and clavicle completely and have significantly reduced the hump and hollowness and twist of the ribs. We have some more way to go and it make some more time but we feel it has been worth it as we have avoided surgery completely and our daughter is nearly normal.
If you are interested, you could get in touch with me at my email id [email protected].
Regards
Lakshminarayanan.
Thank you, thank you. I have heard of your book but did not realize you, too, are touched by scoliosis. I am 46 years old and at the age when I know my curve is worsening. I am always aware of the asymmetry in my body, always in a degree of pain. I do chiropractic and massage every two weeks. I also started working with a trainer two days ago. In addition to my lumbar scoliosis, I had major abdominal surgery four years ago which has left my core terribly weak. I also am recovering from PTSD which relates heavily to my back pain, as well. I believe my physical, emotional and spiritual issues are all inter-related. I do restorative yoga and meditate on a regular basis- those two things, I believe are the keys to my healing. I have thought I may have to give in to surgery down the road. You give me hope that this may not need to be the case. Real hope, so thank you again. I will be reading your book and using your cd.
Thank you, Candace! That's exactly why I decided to write the book! It sounds like you're doing all the right things. The key is to keep hoping -- and more importantly, believing -- that you can stay strong and fit once you understand and accept what your body is dealing with and begin to work with it instead of against it. It's a matter of focusing on the things you can do to stay healthy, and not dwelling on anything you can't do. Meditation has been very important for me as well. Unfortunately, yoga isn't an option any more, but it can be very helpful in maintaining your flexibility and managing your pain. As for your core strength, have you tried Pilates? If you do, please try to find someone very knowledgeable who can make the proper accommodations for you. I hope you enjoy the book and CD. Would love to hear from you!
What caused the cracks? Did it crack where it was fused? This scares me. I had my surgery 25 years ago and have degeneration. Do you have osteopenia or osteoporosis?
Thank you
Gina Lackey
Hi, Gina! The spine cracked both above and in the fusion. Keep in mind that when it cracked, my hardware had already been taken out (and subsequently had to be put back in). Without the hardware, when the block of solid bone which was my spine, started to curve again, it cracked. It's not that uncommon, also, to have cracks above the fusion point, even with hardware. Fortunately, no, I do not have osteopenia or osteoporosis. In fact, I have the opposite. I tend to over-grow bone and get calcium deposits where I don't want them. Could this be because my body has been on overdrive to rebuild bone with all the fusions? I don't know. Perhaps Dr. Josh could comment on that.
I am so glad I decided to read this email. I started having back pain in my late 30's. Was diagnosed with scoliosis and told to strengthen my core and exercise. I did PT off and on several times with no relief or improvement. I also had some pelvic pain which increased my back pain around time for my period. So I decided after talking with my Gyn. to have an abdominal hysterectomy and since I knew he would have to do it open because of "adhesions ", I thought well I might as well get something out of it and even though I'm an RN, guess I had some unrealistic expectations but I thought having a tummy tuck would help with my posture and strengthen my core. Boy was I wrong. That was in 2011 and I still have severe numbness and some unusual pain in my abdomen. My scoliosis has progressed to the point that I'm in pain from the time I wake up till I go to sleep. If I even can sleep. I can't remember the last time I've had a good nights sleep. I've had numerous injections in my back, PT, and on pain meds. I've gotten so depressed I usually don't leave the house. I am no longer able to work. I have been told that my only option is spinal reconstruction with hardware . I am trying to avoid surgery but I'm afraid that I'm going to have to have the surgery. I know sitting on a heating pad all day, bearly getting out and no exercise or stretching is making everything much more painful but just trying to do anything hurts. I'm not myself anymore. I never thought of myself like this before. One of my Psyotherapist gave me the Clear Institute info and I looked it up on the internet. I haven't contacted anyone yet. I don't know why I haven't. Sometimes it's just hard to do anything. Hopefully now I'll be able to get up and try to start moving. I enjoyed reading your post and I may try to get your book and CD. Thanks again.
Hello, Tammy! Thank you so much for sharing! Yes, for those of us with daily pain, it's very difficult to get up and move. And yet, you know that taking that first step will make you feel better. When we move, our "feel-good" hormones are released, oxygen is increased, as is blood flow. Also, sometimes just taking some action, no matter how small, helps us emotionally. I know how difficult it is when we find ourselves in so deep that we don't feel like ourselves anymore. I'm hoping you will find the strength to just do two things today -- call CLEAR, and take a walk. Just go to the end of the driveway and back. Maybe tomorrow, you'll feel like going a little further. But if not, that's okay, too. Find compassion for yourself, knowing that you will do the best you can at that moment and don't worry about the next moment, or the one after that. You don't climb a hill by jumping to the top. You simply take one step. My thoughts and prayers will be with you that you will find the courage to just take that one step. If I can be of any help, please let me know.