WARWICK | DECEMBER 2020

What inspired me to write « Stripes » is my journey living with the disease of Ehlers Danlos Syndrome and it’s huge baggage that affect daily life. My wish with this song is to spread awareness. I have never shared about my disease in such way before either in text or music. But I compose from heart and it came when it was time.

Our symbol for EDS is a Zebra and the stripes represent each problematic area that has been affected as in a domino effect, it leads to many following diagnoses. Ehlers Danlos Syndrome is not a rare disease as portrayed, it is just poorly recognized and diagnosed due to lack of education within the healthcare system. I was diagnosed with “fibromyalgia” as a young teenager and basically left to fight for myself with no following treatments and told to “accept it”. The symptoms of fibromyalgia is a mirror of EDS. The snowball kept rolling through the years and the external/internal problems got worse. There were surgeries, multiple broken bones and bleedings. Complications from not receiving the right help and treatment plan. The complications of not having real Answers.

EDS is a genetic connective tissue disorder that affects the whole body, bones, organs and their functions. The fragile skin and blood vessels leads to increased bleeding and risk of ruptures. The body’s autonomic nervous system regulates all the processes that happens automatically, such as breathing, heart rate, blood pressure and digestion. People with symptomatic-hypermobility (EDS) often suffer from problems with Dysautonomia. In short words, your body forgets to do these things that others do without thinking, and you need to even remind yourself to breathe many times daily. It is a chronic condition that sadly worsen with years. Doctors have often joked with me that I « hit the jackpot of the wrong lottery » haha. We have what we have and the most important is what you do with what you have.

Since I got my diagnose I am so filled with passion to help others who have struggled in the dark without answers just like me. I have already helped several people to get diagnosed by sharing my story and knowledge. This is so important.

« Stripes » is in a way a message to my younger self, wishing to be able go back in time to comfort and explain why the body hurts everywhere. To explain that my feelings are perfectly justified and that it will need to get a lot harder before the answers starts coming. The lesson, to speak out. It took me long time to get there and to ask for help as I’ve always been used to daily pain. Growing up I always had pain everywhere in my body and difficulties doing simple tasks, but I had no idea what was wrong with me, so it often came down to the conclusion by others that I am just “oversensitive” or “weak” by nature. In the past I let others define me and I believed in their words about me, so I learned to keep that pain inside of myself and to never show it on the outside. That was a terrible mistake, but I became a pro to hide it. My body has always easily bruise, bleed, sublux, broke & fractured bones while performing tasks that are part of daily living. Taking part in gymnastics in school always left me injured so these classes caused me an enormous amount of anxiety. In primary school I broke my toes during gym class, but my teacher thought that I was lazy as I had fallen to the floor. He was this awfully cold military guy, just yelling at me and grabbed me back up on me feet and forced me to run, in front of my whole class.. I was running on my broken toes as the tears silently flooded down my cheeks while the kids laughed at how clumsy I looked. Similar occasion happened as I broke my ribs, cracked my foot etc etc. I got used to that this is how it is. When you are constantly in pain and know that moves can and will hurt, you live in constant anxiety because you never know when it will bend until it breaks, but you don’t want to be a burden for others, plus it’s humiliating.

There was a bedtime story when I was child called « The Princess and the Pea » which my mother used to read to me. This story spoke to me so deeply as the princess is super sensitive in her skin and got hurt and bruised even by a little pea that was places under 20 sets of mattresses that she was to sleep on top of. The pea was placed there without her knowledge to test her. My mother used to comfort me and whisper to me « The reason why you and me hurt like we do, is because we are princesses ». It was such a sweet way to say it. My mom was hurting just like me but she was undiagnosed herself and didn’t get diagnosis with Ehlers Danlos Syndrome, arthritis etc until years and years later in life. We’ve always had that deep connection and understanding for each other without knowing that we share a genetic disease. My mom has always been my Soul Sister, My Rock and my best friend. This song is also wrapping it’s arms around her, my warrior soul sister. We carry our stripes with our heads high and do the best with everything we have.

I once sat in the office at one of the specialist and the doctor asked me,

– « do you have any pain today Julia? »

and I answered:
– « I’m having the normal amount of pain »

which she replied..
– « Umm The Normal amount is: Zero… »

This is the moment when things slowly started to open. It was years ago.

All wrapped up together this became a song about my Stripes and my journey as well as a love song to the one who always see beyond my stripes and whom I love more than life. My all or nothing, my ride or die. Living with connective tissue disorder I need to always be flexible and impulsive as it is very hard for me to plan ahead as I never know how I will feel in the next moment or day. Making the wrong move can mess up so much in my body. Some periods are really tough and in these times everything may seem black or white, but I have so much colors running through my veins. We all crash at times and it’s a part of life, but then we rebuild ourselves again and again. This is the journey of life. While things may seem fragile, weak or even broken, there is always a part of us who grow stronger. The moral of this song is basically to do the best with the set of cards you have been given in life and give it your best shot. Live Now.

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