Emily Talbot, 17, shares her story about her lifelong battle with a rare brain disease and how she has overcome the physical and mental health challenges caused by the condition through writing and performing music.
Although I look like any other 17-year-old, people don’t know that I live in pain 24 hours a day.
Since the age of 7, I have had 14 brain surgeries, 12 back surgeries and 6 stomach surgeries. I can’t begin to count how many spinal taps I’ve had.
It all began when I was 6 years old. My teachers at school noticed I would always space out during class. Then at recess, out of nowhere, I would fall down on the playground. My vision started to get worse as well.
That’s when my mother decided to take me to the doctor to get checked out. After doing an MRI, they diagnosed me with a rare brain disease called Chiari malformation. This meant that when I was born, my brain was too big causing it to hemorrhage out of my skull. My cerebellum – the part of the brain that controls balance – protruded into my spinal column and wrapped around my spinal cord.
To help manage my condition, I have a brain shunt that was surgically placed to relieve pressure on my brain caused by fluid accumulation.
With all of this, I also suffer from depression and anxiety.
However, there’s been one thing that’s kept me going – and that’s music.
Music is the one solid thing in my life. It is my therapy, and has been there for me whether I’m happy, sad or angry. Even when I’m sick in a hospital bed, and I can’t do anything because of the pain, the one thing I can always do is play music and sing. Within a few minutes of singing and playing my instrument, I feel no pain – it’s like the pain vanishes.
My father was the whole reason I started singing and playing instruments. He taught me how to play guitar at age 10, and from there I learned how to play the piano and ukulele. I also find musical inspiration from artists like Joni Mitchell and Paul Simon.
I’d have to say that Selena Gomez is one of my biggest inspirations and role models. Seeing her battling lupus and undergoing a kidney transplant all in front of the public eye shows her strength as a woman and that she can go through anything while also expressing herself through music.
Like the artists that have inspired me, I feel like I’ve been able to use my songs and music to help reassure and remind people that they are not alone and that things can be hard, but not all the time.
There are some really good parts that come out of pain, and we have to remember that.
