Normal is a Mindset

livebellasoul.org

livebellasoul.org

 

Shannon Strader; Founder of Bella Soul opens up on her own inner battles with chronic health and how this translates towards the powerful mission behind her organisation helping college students discover their true potential through adversity

 

 

What is “normal?” What is “average?” How can one define such words?

Many children are asked “what do you want to be when you grow up?”  However, I was never asked this question. I grew up in a place where survival was the only item that was ever thought or talked about.

I grew up in a hospital. I was born with my twin sister, Lauryn. Lauryn contracted meningitis at 20 days of age and developed cerebral palsy. Lauryn could not walk, talk, or eat without a feeding tube. My earliest childhood memories involve being in the hospital, holding my crying sister’s hand, or seeing my parents in horror.

After her death, I turned to the only place I knew like the back of my hand, the Children’s Hospital of Illinois. I started volunteering at holiday events when I was 10 and continued as I grew. By the time I was a senior in high school; I had been a child life volunteer specialist on the paediatric unit and an OB/GYN volunteer specialist. Since my twin was in the hospital and had a shared room the majority of her life, I had become very close friends to endless numbers of very sick patients and their families. The children’s hospital has this unspoken language of its own. Any child who is sick has an entire different outlook on life. The hospital and life outside the hospital are very different places, and I knew from a very young age inside the hospital is where I belong.

I was a recognized fixture at the hospital. I was invited to be on the Kids Board of Leadership for the Children’s Hospital of Illinois, a position I held throughout high school. I was a participant in the ground-breaking for the new Children’s Hospital of Illinois and received the Joey Stowell award before I graduated high school. My plan was to go to University of Wisconsin-Madison to major in Neurobiology but more specifically to work with my long time inspiration, James Thomson. James Thomson was the first person to derive an embryonic stem cell and later derive induced pluripotent stem cells. As a child, I would read medical journals in my free time, because I loved the thought that maybe someone was just as passionate and curious as myself about cerebral palsy and was working around the clock to find better treatments, understanding its pathology and etiology. James Thomson’s journals were my favorite of all to read. I contacted him when I was a senior in high school to thank him for his work. He offered me a position as an undergraduate researcher.

However, the summer before I started my dream job, I received a medical diagnosis that changed my future.

I always knew I was sick. I had not felt well for years. I did not understand why I felt so bad, why I had blood in my urine, why I vomited every time I ran, and why I couldn’t gain weight. I heard many possibilities from stomach cancer to mental disorders for what was wrong but for a long time, no one really knew. Eventually, I pushed harder to get more help.  I saw a medical specialist who said it was all in my head. I knew this was not the case and fought to be heard. After more diagnostic work, it was discovered that I had a vascular anomaly, my renal vein was behind my aorta instead of in front; it was being compressed by my spinal cord and aorta, a condition called posterior nutcracker syndrome. In order for me to get the most expert care for this unusual condition, I was referred to Mayo where I received the first surgery of its kind, a renal transposition with a diamond patch. I went to college after the summer of the surgery and couldn’t have been more excited to live a “normal” life. Yet, I arrived and slowly but surely my symptoms returned. I had two additional vascular procedures during my freshman and sophomore year to stent the left renal vein where scar tissue had built up after the surgery. My parents told me I should take a break from school, but I knew I needed to continue to live a “normal” life even if my body was telling me otherwise. I truly believe college helped me to become healthy again.

Many people view disease and sickness as a vulnerability. The vulnerability for me was instead a strength. In midst of adversity, I was able to accept my circumstances, move forward, and never look back.

Many days when I couldn’t get up from my bed or couldn’t find a position, in which the pain would resolve, I would think that I was a victim and there was nothing I could do. I had these thoughts many times throughout my undergraduate years, but they would never last long. I knew from my twin no matter what your circumstances are you can get up, live, and change the world. There was no support for me when I was sick on campus and existed no national organization that supported individuals with chronic physical illness, disease, or disability in college. Therefore, I founded Bella Soul, a 501(c)3 non-profit. It is the mission, duty, and purpose of Bella Soul to empower college students with chronic illness or disability through scholarships and emotional support.

So to answer my question what is normal? There is no such normal; everyday people break barriers, everyday people prove again and again that statistics and labels mean nothing. The human body is an extraordinary machine; it shows miracles happen every single day with hope, passion, and perseverance.  I want to be on the patient’s team to help them realize their invincible strength to fight all odds. I want to give them hope! I want to put my entire soul and heart to help them feel better in any way. I will do anything in my power for my patient to get the healthcare they need. I have worked my entire life to try to improve lives of those who are sick, and I want to continue to make healthcare better for patients. More importantly, I want to continue to learn, and I truly believe being a doctor is all about moving forward and being in a constant state of discovery.

Bella Soul has since given 10 scholarships out in the last year alone to help individuals battling a chronic disease pay for their medical bills. We will be starting the Bella Soul Sibling Program this upcoming fall which will provide scholarships to individuals who take care of their terminally ill sibling.

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