Hi there, friends! I hope all is going well with everyone. Life has been pretty crazy here as we recently purchased a cold weather garment making business and I have been neck deep working on all of that!
In honor of National Scoliosis Awareness Month, today I’m featuring an interview with a sweet sister in Christ I met while in college who lives with scoliosis and is one of the hardest working, most adventurous, and most resilient women I’ve met.
Take it away, Korah!
Can you tell me a little bit about yourself?
My name is Korah Bouma, I am 22 years old and 7 years post spinal fusion. I am a student at the University of Wyoming, hoping to graduate in spring of 2019. I was diagnosed with scoliosis at age 13 and had surgery a week before my 15th birthday (Huge bummer, I had to wait to get my driver’s permit!).
For our readers who aren’t as familiar with scoliosis, could you explain what it is, diagnosis, treatment, and long term prognosis? What has your journey with scoliosis been like so far?
Scoliosis is a sideways curvature of the spine that usually reveals itself during puberty or a growth spurt. It can be caused by cerebral palsy or other congenital conditions but it is mostly idiopathic, that is, we have no idea why! The prevalence in adults is roughly 1 in 10 and usually minor cases, for unknown reasons, girls end up with rapidly progressing curves that need treatment more than boys. If diagnosed early in children, a brace can be prescribed to stop the curve from becoming more severe, and people generally have a normal life after the brace is removed with minor pain. Shailene Woodley wore a brace all through the filming of ABC Family’s “Secret Life of the American Teenager”!
For the rapidly progressing, major cases, like mine, surgery is required. Spinal fusion is an extremely invasive surgery, I was in the hospital for a week and once I got home, could not do anything without help. The surgery involves 2 rods and a varying number of screws (20 for me!) depending on how many vertebrae need to be corrected.
Sadly there is no real cure for scoliosis. This surgery does not cure scoliosis, it just makes life easier for the patient. If the curve were allowed to progress, the spine will rotate and twist pressing on organs and in severe cases cause death.
After the fusion, I still have a 25 degree curve in my lower back but the majority of my back is stiff as a board! Hearing about this makes some people uncomfortable, think about never arching your back! It is not something I ever think about, it is just part of life for me now!
What has been the most challenging part of living with scoliosis and how do you overcome that challenge? Are there lifestyle things you do to help you thrive with scoliosis?
The challenging thing about scoliosis, and the reason I am contributing to this blog, is that it is a chronic illness with chronic PAIN. For me that pain manifests in pinched sciatic nerves, sore neck and shoulders, and my lower back takes a lot of the tension that comes with bending over. Just doing the dishes or laundry takes a toll.
To fight this pain I have gotten into yoga. But not yoga like you might imagine, no complicated twisting or bending over backwards. Julie Wilkins of the blog Forever Fused, is a yoga teacher with a spinal fusion herself, who specializes in building mobility for people with spinal fusions. She has videos showing proper lifting techniques and safe stretches. I suggest her videos even to people with normal spines, everyone needs to be aware of their back! Her work has changed my life because there is little to no support for adults living with scoliosis.
What do you do to take care of yourself mentally and emotionally?
Scoliosis is seen as a “teen” problem, an awkward phase you grow out of. You might be thinking of some movies or shows where the nerd wears a brace; think Joan Cusack in 16 Candles, Dee Reynolds the “titanium monster” in It’s Always Sunny in Philadelphia.
There is not a lot of scientific or medical support for post-fusion people. Julie Wilkins is changing that by creating a community of people who share the same trauma. That is the key I think, community!
I am also a part of Wyoming’s chapter of “Curvy Girls Scoliosis” which is more oriented towards adolescent girls. We meet every month and commiserate, socialize, we are even planning a photoshoot to showcase the beauty of different bodies.
If you could give one piece of advice to someone with chronic pain, what would it be?
My advice is, find people who have faced the same trauma you have. You are not the only one feeling overwhelmed by your diagnosis. Process that trauma and don’t ignore it.
Looking ahead, do you have any big plans? Does scoliosis impact those plans at all?
For the future, I think about having kids and the extra toll that will take on my body, not to mention my post-surgery anxiety towards hospitals. I think when that time comes I will look into some sort of counseling. Other than that, I go to work, school, play sports with no problems. I know my limits and if I stick to them, it doesn’t keep me from doing what I want to do. I actually just got home from a 3 weeklong trip in Israel where we were walking 5-10 miles every day! Find a way to do what you want to do!
We would love to hear from you!
Do any of our readers live with scoliosis or have any questions? We would love to hear your story :).