On Curves and Chronic Pain

On Curves and Chronic Pain | My Scoliosis Story

Yesterday, I sat down with yet another doctor to talk about the story of this curve.

About how a titanium rod was screwed in to help straighten it when I was a freshman in high school. About how a decade later, I felt a frightening snap. About how after going from doctor to doctor to doctor — begging for months for someone to figure out why I was suddenly in so much pain — I woke up one morning and couldn’t move my knee. Then later felt a mysterious bump. Then, after being told by multiple doctors “not to worry about it”, eventually discovered that half of my scoliosis rod had somehow broken off…and (unheard of) come unscrewed…and (crazier yet) “migrated” down past dozens of critical organs, where it was lodged in my calf muscle.⁣

Yyyyeah.

The radiologists clustered around the x-ray machine that day told me it was impossible. The nurses told me it was a miracle that I was alive. The orthopedic surgeon on call broke the news that — contrary to what we had originally been told — my spinal fusion a decade before had actually failed, leaving my spine unstable. But that unfortunately, it was too dangerous to re-operate and see if the remaining half of the rod was still screwed in tightly.⁣

Ever since, this curve has haunted me. I try hard not to think much about it. But every time my back pops, or I twist an inch too far in yoga, or think about the next 5…15…50 years, I worry about that rod. And say my thousandth prayer that it stays snugly in place.⁣

Ever since, this curve also just hurts. Most days, it’s a chronic ache that I’ve learned over the years to live with. Some days when I push too hard, it lights my entire back on fire and clears my calendar. Some days I forget all about it, although those days are fewer as I grow older.⁣

Ever since, this curve is also my most visible reminder of the sheer preciousness of life. I used to look in the mirror and only see asymmetry and scars. But today, I see a strong body that still gives me the extravagant gift of being able to walk, travel, do my job, and go on living.⁣

It’s the one precious body I’ve been given. And even though we’ve had a complicated relationship, I’m learning how to fear it less and love it more. And be so very grateful.  

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109 comments on “On Curves and Chronic Pain”

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  1. This is beautiful. Sending you lots of love, girl.

  2. I have scoliosis too, and while our situations are different, I know how exhausting that kind of back pain can be. I’m so sorry you’re having to go through it.

  3. This is so inspiring. You have every reason to feel self-pity and succumb to the pain that plagues you and yet you’ve given and continue to give the world such an incredible gift through your blog and your recipes! Your blog is my GO-TO for fabulous recipes and you’ve honestly made me a better cook by helping me build confidence in my abilities. Thank you so much for all that you do!

  4. So sorry for your pain but admire your approach to life. Princess Eugenia got married last Friday at Windsor Castle. Her wedding dress had an open back to reveal her scar from her socolious surgery when she was 12. She wanted to bring awareness to this condition. Brave girl

  5. So is the other part still in your CALF??

  6. Amazing story. I can’t imagine what you’ve been through. The awesome part is that you’re optimistic even with the pain you know is ahead. Very Inspiring. Thanks for sharing.

  7. My scoliosis has been the thing that has always reminded me to take care of myself, stay strong, & pace myself. Now in my 60’s I think I’m actually in better shape than many friends who have not needed to be so careful. Gifts come in very strange & crooked ways sometimes!

  8. O sweatheart. Lots of love, joy and strength for you.

  9. Thank you for sharing your brave story. When I saw the pic, I thought it was about Princess Eugenie’s Wedding gown. And thank you for the reminder of the preciousness of life.

  10. Wow! What a story. Prayers for you and wishing you well.

  11. God bless you! Thanks for sharing your struggles and beautiful thoughts. You are a strong and talented young lady.

  12. I’m so sorry that you’re having to live with this pain. I’ll keep you in my thoughts and pray that you find your relief. I so enjoy your recipes and getting to peek into your life, keep up the great work!

  13. Oh my goodness! My jaw dropped reading this post. Have you had second and third opinions if you can have another surgery! I cannot imagine the pain and fear you live in every day! *hugs*

  14. That’s an incredible story. Thank you for sharing and, especially for sharing your thankfulness, even in the midst of pain and an uncertain future. I pray that God will bless you, will keep the remaining rod securely in place, and give you many more good days than bad!

  15. You are so inspirational. Puts things in perspective for me. Guess my little aches and pains are not so bad after all. Thank you for sharing your story and strength. Thank you for sharing wonderful recipes even though struggling through pain and anxiety. You are in my prayers.

  16. You’r a beautiful and strong young woman with great drive and determination. I hope that Dr.’s will find a way to correct your medical situation so that you can continue doing the things you enjoy with ease.

  17. One would never know what pain you endure due to the bright smile always on your face. It is a lesson to all of us to keep smiling. Thank you for sharing.

  18. So brave and refreshingly upbeat. Anyone suffering from chronic pain will benefit from your perspective and optimism. I love your blog and have been making your recipes for my family, so we all love you. Now when I make one of your recipes, we will include you in our pre-meal prayer. Your Potato Soup is on my list this week, so feel the love!

  19. Wow! I’ve had severe back issues for 50 years now, ever since my back gave out while shoveling ash in the flues under a blast furnace in a steel mill (my last summer job). It was then that they discovered my severe roto-scoliosis, the worst my chiropractor has ever seen. I’ve been seeing him three times a week for almost as long as he’s been in practice…25 years now. He provides me relief from my extreme pain, which it sounds like you’ve lived with almost your entire life. I understand your pain. Your story is precisely why I’ve shunned surgery for this entire time. Hopefully, knowing you’re not alone out there will provide you some comfort as you live with your pain. The rest of us are pulling for you!

  20. You are so brave, and have such a great outlook. What an inspiration. My hope for all of us is that physicians everywhere will read posts like this and learn to listen to their patients better. My hope for you is that advances in orthopedics will enable you to be pain (and worry) free in the future. Thanks for this.

  21. This is beautifully written. I love how you haven’t let your curve take over your life. I, too, have scoliosis, and it’s on my mind at all times. I love that you’re so open about this subject and how it affects your day-to-day life.

  22. I love your outlook. Many people would have just given up hearing those 4 words of, “your spine is unstable”. I could not even imagine. I wish you nothing but the best while you continue to take your steps day by day.

  23. I just cringed….my daughter had the same surgery in 8th grade…just 4 years ago. Were they able to at least remove the rod that moved to your calf? I’m so sorry you’ve had to go through this.

  24. That’s incredible. That type of pain can effect every moment. As for not being able to operate can be so frustrating. My daughter had a Titanium implant put in her right shoulder after the shoulder bone was removed due to Bone Cancer (osteo -sarcoma) at age 8. She’s now 31. A few months back we were told they couldn’t operate due to muscle & tissue etc had grown over it. But they did say they could go in with a camera to see what was causing her pain. Just something I was wondering if they had mentioned something like to you.

  25. Dr John Bergman – corrective chiropractor based in Huntington Beach CA. He’s doing remarkable things through natural treatments. https://youtu.be/H-bY7wvGs98 You can see how he does it in this video. He’s remarkable. Best of luck to you.

  26. Praying for you.

  27. Wow! My heart just broke reading your story. I hope they can safely get that migrating rod out. My huband lives with the chronic pain of ankylosing spondylitis. People suffering from invisible pain get such flak from others who can’t see why they have pain. Prayers and blessings for you.

  28. This helped me so much today—thank you for posting it. I’m so very sorry about your back and your pain and worry. Bless you for being such a beacon of light in the world—I look forward to your posts every day. Sending much love, gratitude, and good wishes your way.

  29. You are very special. I wish you well. I enjoy your emails and your personal stories. You are right! each day is precious and you just helped me appreciate this day today more with your story.

  30. You are in our our prayers my dear Ali. Never stop looking for a remedy. Check with large medical centers from time to time as they always have experimental modalities they are researching. Take care of yourself, do what you have to do to be happy, and never give up. Know that there are always people you can reach out to. Never give up…

  31. Oh my goodness! Bless your heart! I am so sorry y’all are going through this! You are in my prayers ❤️

  32. “Some days when I push too hard, it lights my entire back on fire and clears my calendar. Some days I forget all about it, although those days are fewer as I grow older.⁣”

    Wow, Ali, you are some awesome role model. You might try some CBD for some relief. I am putting you in my God Jar. Your writing is superb.

    La Verne

  33. God bless, you, Ali! I will keep you in my thoughts and prayers!

  34. Praying for healing

  35. What can be said that many haven’t already???? You are truly a blessing to so many and encouragement as well. Love your recipes and the glimpses of your life…..how precious you are. Great reminder to count our blessings.

  36. Having endured spinal fusion surgery almost 5 years ago I can feel your pain. My left leg and foot are weak and I have chronic pain but girls are tough right? I push through, I walk 2 miles a day and have a 12:00pm tee time today! I love golf more than it loves me but I am out there! Hoping you find a surgeon that can help. They are making advances everyday! Sending hugs!

  37. Your story is so inspirational! You are such a brave woman, beautiful inside and out! Thank you for sharing your story and giving us another reason to be thankful for all that we have. God Bless you and stay strong!

  38. Oh, honey. Big, huge hugs. It pains me to think of you in this pain, when you give to the world such joyful yummy ness. A few, gentle thoughts. Get a second or third opinion on your condition. Read the book, “ Crooked,” which is an honest evaluation of the “back care” industry. Maybe read the book first and then go from there. As a massage therapist, there are practitioners in our industry who work with spinal anomalies – you may need to dig a little. And by all means, get that rod out of your calf. Yoga and aquatic exercise can be healing. Wishing you well.

  39. Sometimes I get SO ANGRY at the doctors! They blatantly ignored your pain and concerns instead of doing a simple, non-invasive x-ray to confirm your suspicions. I have to keep remind myself that doctors are PRACTICING medicine. I’m sorry for what you now have to live with. I’m also proud of you for not letting your rod get the best of you!❤ To you and all of our sisters of back pain: Keep Laughing! Accept the blahs, and keep moving!

  40. Blessings to you, and thanks for sharing. I so much appreciate the reminder to live in the moment, to take risk, and to try to move away from fear.

  41. Nerve ablation. Might work for you. Works for me.

  42. Ah you brave, sweet girl. Sending you love and light all the way from Canada. Xoxo

  43. Gratitude? I am grateful for finding your blog. Not only are the recipes delicious and easy, your pure joy of living inspired me.
    Please listen to Jim’s post. Keep trying. Keep trying. You will stumble onto someone or something. Do not give up. There is always hope.
    After 6 cancer surgeries and way too many doctors, I did stumble onto a doctor who understood and helped me.
    You have accomplished something amazing. Your blog has cultivated really really nice people. We are all pulling and praying for you. Help is out there.
    With Love and Gratitude

  44. My heart goes out to you. Thank you for sharing this. You are brave and strong, and it has inspired me more than you know. A big hug to you!

  45. Just because something appears to be impossible doesn’t mean it hasn’t happened. I’m curious to know if the part of the rod in your calf muscle was ever removed. That doesn’t sound like something you can live with. I admire you for keeping on keeping on, and am sure that it is a bit easier since you have Barclay. I know that all the issues with my body are made easier to deal with since I have a loving husband.

  46. Wow! Thank you for posting this. I had no idea and appreciative your openness, vulnerability and strength. ❤️

  47. Oh, wow. Sending you peace and strength.
    Margot

  48. I get this. Scoliosis, 3 fusions, rods that broke. I get this my friend ♥️.

  49. How incredibly amazing😇

  50. You are inspirational and have a positive strong soul!
    Your recipes are delightful and delicious!
    I pray for you.
    Stay strong !