Soon after I created my Instagram account, an upbeat fellow “Instagrammer” began commenting on my posts. Soon we began communicating. Indi is amazing! She was diagnosed with significant scoliosis but has not let that damper her spirit or her accomplishments. In addition to writing a blog, she also has a vlog on You Tube and is an author! Indi’s life story was portrayed in a documentary!
Here is my interview with Indi.
1. Please tell us about yourself. Where do you live? Hobbies? Likes and dislikes?
My name is Indi Taufik, but people call me Indi or “Sugar” for short. I was born and live in Bandung, Indonesia. I have severe scoliosis and I am still in brace, but only for 12 hours a day (yay!). I love movies so much and enjoy having DVD marathons in my spare time. My ultimate favorite movies are “Mrs. Doubtfire”, “Rory O’Shea was Here” (Inside I’m Dancing), The Sound of Music and many classic musical movies!
In 2013, “Investasi Film Indonesia” (movie producer) made a big screen movie inspired by my life story called “MIKA”. The movie was pretty successful and was on top ten list “most watch Indonesian movie 2013”. I’m so happy because I could be the part of something that I really love, and of course, because I can share my life experiences as a scolioser (people with scoliosis).
I love music, especially when it involves a cool guitar solo (lol) such as, Aerosmith, Queen, The Doors, Guns n’ Roses, Red Hot Chili Peppers and John Frusciante. I was in the choir for 5 years and since 2015 I taught myself how to play an ukulele 🙂 I share my ukulele playing on my YouTube channel, and I share my life as scolioser too on YouTube series called “Indi’s Scoliosis Life”.
I also love animals! I wrote a novel called “Guruku Berbulu dan Berekor” that the royalty goes to animal shelters. I have one silly dog named Eris. She’s so small but always hungry. She found a big tumor on my left breast 3 years ago, so she’s a hero too! 🙂
I wrote two other novels called “Waktu Aku sama Mika” and “Karena Cinta Itu Sempurna”, and one educational book for kids called “Conversation for Preschoolers”.
My favorite food is pizza! I can eat one pan all by my self :DI dislikes discriminations and traffic jam!
2. When did you get diagnosed with scoliosis?
When I started walking, my mom said that I was always tip-toed. I keep tip-toeing until in the elementary school and we found out that I have flat feet. We fixed it with a special padded shoes, but I still had a “bad posture” (slouching) and a “funny walk”. When I hit puberty my right breast was slightly smaller than my left breast. Doctor said it’s normal because I’m not fully grown yet. But when I was 13, the size difference became more obvious and finally, the doctor diagnosed me with moderate scoliosis after I accidentally found a big hump on my right side of back.
Even though girls are usually more severely affected than boys, the doctor told my parents to not worry with my condition. I was young, so there’s a chance that my spine would straighten with a brace. I wore a Boston type brace 23 hours a day, went to physical therapy 4 times a week and went to a routine appointment with my orthopedic doctor. My brace was so bulky, so I kept falling backward when I would sit on a soft surface, hahaha! Unfortunately, the Boston brace didn’t work well to me, my scoliosis increased from moderate to severe in only 4 years.
3. What were your feelings at the time of diagnosis?
I was confused. I’m not sure what was happening to me. It was weird that a day before I got diagnosed I was still playing basketball with my classmate. I was okay, I was not in pain. But suddenly the doctor told me to stop jumping and running because it can make my scoliosis worse!
4. What causes scoliosis?
Some cases of scoliosis are caused by conditions that affect the nerves and muscles (neuromuscular conditions), such as cerebral palsy or muscular dystrophy. And the rest of the cases is idiopathic or unknown. There’s a research that mentions about 1/3 of idiopathic cases is genetic. My scoliosis is structural (the spine curving from side to side, the vertebrae rotate, twisting the spine) idiopathic with S curved shape. My dad also has a scoliosis but very unnoticeable (mild).
5. What are the different degrees of scoliosis? What are the treatment options?
Mild scoliosis is when you have less than 20 degrees, moderate scoliosis is when you have 25-45 degrees, and severe scoliosis is when you have more than 50 degrees. The severe twisting of the spine that occurs in structural scoliosis can cause the ribs to press against the lungs, restrict breathing, and reduce oxygen levels. The distortions may also cause dangerous changes in the heart. My scoliosis now is 58 degrees, but when I wear my SpineCor brace it reduce to 40 degrees. I hope someday the change will be permanent 🙂
This is rare, but some people also could have a very severe scoliosis. It’s when you have more than 100 degrees. People with this degree of severity are susceptible to lung infections and pneumonia. But it’s not always scary, my friend, Mr. Yosef had a very severe scoliosis and polio (his doctor said that his condition is similar to a ‘folding knife’). But he’s very active as a musician and a motel owner! 🙂
Mild scoliosis usually doesn’t require any treatment, just very careful observation. But when your curves up to 30 degrees, it’s likely that you will need a back brace. Every scoliosis case is always different, so every brace is design differently for every scolioser 🙂 Surgical treatment is needed when you had more than 45-50 degrees to lessen the curve and prevent it from getting worse.
6. What levels of pain are associated with scoliosis? What treatment is available for the pain?
Scoliosis can cause pain, it’s because strain the muscles to compensate for the lateral curve of our spine. Sometimes we experiences spasms or muscle twitching too, in some body part. Every scolioser is different but mine mostly happen when I just wake up in the morning or when I sit too long. It’s not a pleasant feeling, but sometimes could be funny too. A little sneeze, my back started spasming and suddenly I become a good break dancer! hahaha 😀
My Doctor prescribed me a pain relief medicine, but there’s others option too. Physical therapy is an excellent way to reduce the pain. Physical therapy, for me, gave a more permanent result than the medicine, because make my posture better and taught me to walk properly. Heated pads are also great for the pain. Some people find that yoga helps them to relieve the pain. Just make sure to asked your doctor first, because there’s some poses you need to avoid especially when you had a severe scoliosis.
7. What treatments did you have? Were they successful?
I was wore Boston brace for 5 years, but didn’t work as good as expected. My curve increase from moderate to severe (from 35 to 58!). And then I switch to SpineCor (soft brace) for the last 2 years and my curve is stable. My expectation is really high with my new brace. My doctor said the goal is to make my curve stable, and if my curve degree is reduced, —then it’s a bonus! 🙂
I also use to have chiropractic treatment for several years. It’s good for the relief of pain, but the result are temporary. My curve reduces about 5 degrees, but always returns to my original degrees.
So for now along with the SpineCor, I do the physical therapy routine and sometime an ultraviolet treatment.
8. After successful treatment, is there a chance that it can happen again? Is there a way to prevent that? Is the treatment the same or different?
Scoliosis is not a disease, so it can’t be cured but the symptoms can be reduced with treatment. The goals of non-surgical treatment is to reduce pain, rather than to correct the spinal curvature. So, yes, there’s a chance that my curve will increase again after my SpineCor treatment finished (I might need to wear it until next year), but not as bad when I was younger since I’m fully grown now (I’m 20 years old). To prevent that (after the treatment finished) I need regular check ups and wearing my brace again every once in a while. I never really talk about surgery with my doctor, but if something unwanted happens I will be ready to deal with that. My friend who had a scoliosis surgery said that there is nothing to worry about because the surgeons always do the best they can do to help you 🙂
9. What are the risks of treatments and surgery? Did you have permanent damage even after treatment and/or surgery?
In my case, my Boston brace didn’t work as expected, so my degrees kept increasing until switching to SpineCor brace.
I have not needed surgery yet, but all I know is the level of scoliosis surgery success is pretty high. I meet a girl at a scoliosis gathering who needed a crutch after surgery. Her doctor said that cases of paraplegia are very rare, like 1 in 10,000 chance! She also said that her back has never felt this good before 🙂
10. What did you miss out on because of your scoliosis? Are there things you could do before diagnosis and treatment that you can’t do now?
Running and jumping! Oh, I used to play basketball with my classmate, and it was really fun! Once you’re fully grown you can do most physical activities. However, since I developed some pain, I can’t do these thing anymore. Of course, it doesn’t happen to every scolioser. Many of us can be reallyyyyy active even after the surgery because every case is different. With my SpineCor, I can now bend my body easily and sometimes I can sit on the floor too. Those were really hard to do when I was wearing my Boston.
11. How did you cope?
Do other things! When I miss basketball, I stand in front of the ring and throw the ball. I’m not bad as a shooter :p Or I play racing games, it gave me a “freedom” feeling!
12. What advice would you give to a teenager diagnosed with scoliosis? What advice would you give to their parents/caregivers?
When you are first diagnosed it might feel scary. It’s okay if you want to cry for a bit, I cried too when I had my first measurement for brace. Just give yourself a break and time to calm down. You will get through it, trust me 🙂 Try to accept scoliosis as a part of you. Don’t treat your brace and your physical therapy routine as a burden. The brace might make you feel limited but it actually will help you to get better. Ifyour doctor allows you, go decorate your brace and rock it! You’re still you! the physical therapy routine can be fun too. Make new friends when you’re waiting, join a group support, be active! 🙂
For the parents, please don’t blame your self 🙂 It’s not anybody’s fault. My mom blamed her self because she thought she failed on taking care of me. However, she’s a GOOD mom. Even the pediatrician can’t tell right away if a child has a scoliosis, especially when it’s a mild case. Please be there for your child. I understand that sometimes a physical therapy session is painful to watch, but I always felt more comfortable if my mom or dad accompanied me. It’s also a good way to understand more about your child condition, parents could have a discussion with the therapist, the doctor, or maybe other parents.
It depends on the type of the braces, but SpineCor is a bit more complicated to wear than any other type of brace. Your child will need extra time to get ready before school, especially on the first week. So please be patient 🙂 It’s not easy to remember all those 6 straps and where to attach them, but once your child gets the hang of it everything will back to the usual routine. According to my experience, after 7 days I can put on my SpineCor independently in under 3 minutes!
I recommend this website which gives tips for spine surgery caregivers www.spineuniverse.com. I couldn’t agree more with the tips, especially about being “a cheerleader”. After the surgery, a simple task such as putting on socks or sitting can be challenging and all you need is someone to encourage you! 🙂
13. Is this something that is genetic or prone to happen in families?
Could be! About 1/3 of idiopathic cases are genetic. My dad also has mild scoliosis.
14. What do you want people to know about scoliosis?
That scoliosis is not just a cosmetic problem. It affects peoples lives 24 hours a day, 7 days a week. It could be dangerous and shorten the life span if not treated properly (severe case).
And yes, scoliosis could be “funny” sometime, but it’s NOT a joke. You can’t make fun someone just because she/he is in brace like in the movie, “Romy and Michele High School Reunion”. Or telling someone with a Milwaukee brace to run until her/his brace falls apart like in the movie, “The House of Bunny”. Film makers should stop making scoliosers a joke (remember “geeky girl” from Sixteen Candles?).
15. What prompted you to blog and vlog about your experiences with scoliosis?
When I was fuirst diagnosed, I wish someone would have talk about scoliosis so I did not feel alone. I was uncomfortable wearing my brace to school because I’m worried other kids (and even teachers) wouldn’t understand what happened to me. I hope blogging and vlogging can help people understand more about scoliosis. Also, I want to tell kids and teenagers who have just been diagnosed that they’re not alone.
16. What ways can we advocate and spread awareness for individuals with scoliosis?
Anything! Use every media you have to spread awareness about scoliosis; social media, radio, television, etc. Or the simplest thing is to encourage yourself to speak up. When a stranger you meet at a grocery store or event concert asks about your brace, don’t hesitate to tell them about scoliosis. You might save somebody’s life, because many people don’t realize that they have scoliosis, especially before they have developed pain.
17. What are your future plans and aspirations?
I want to make a free scoliosis screening program at local schools, especially for kids between the ages of 10-15 years. I still don’t have an idea how to started it, but I’m sure I will find a way 🙂
18. Any final thoughts?
It’s not come from my self, but I couldn’t saying better than Rory O’Shea; Live life like you mean it!
Indi’s blog is not in English, but in a past conversation she indicated that she may in the future! Here is the link! Click here to check it out!
Indi’s You Tubes are in English! Click here to subscribe to her channel!
Click here to check out Indi’s Instagram
Thank-you Indi for taking the time to give us a glimpse into your life! I am honored to know you!
Until Next Time, Keep Rollin’ and Keep Smilin’
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