From Birth to Beyond: Mary’s Story

I was taught to self-catheterize at the age of six because I couldn’t urinate any other way. I carried catheters for 44 years; otherwise, I had no other way to go “number one.” I hid the catheters in purses. As a child, my 4th-grade friends thought I was the most fashionable one with all my different accessories. Little did they know how embarrassed I felt having to do something so different from my peers, including using the employee’s bathroom. I didn’t publicly announce to the world that I used catheters to urinate until I was 44 years old.

Around the age of six, we also found out I had Precocious Puberty (early onset puberty). I was one of the first patients to be treated with the then-trial drug Lupron, which is now widely and successfully used for Precocious Puberty. I received shots daily until I was 11 years old. And I had monthly transfusions at St. Joseph’s Hospital. The drug worked so well that my family was asked to speak about our experience with it on a large broadcast television morning show. But for my own protection and privacy at the time, my parents opted out.

At the age of 27, my bladder could no longer hold urine, and I was leaking like a waterfall, sitting in diapers all day, and unable to go anywhere. With my parents’ support, we made the bold decision to reach out to one of the most well-renowned Urological Surgeons in the country, and flew to UCLA so I could have a Bladder Augmentation surgery with mesh slings. That was one of the hardest operations of my life. I ended up in the ICU for the pain, without food or water for 9 days while in the hospital, recovered at their residence home for 19 days, and flew back to Arizona with 3-4 drainage tubes to recover for a few months. Thankfully, the surgery successfully fixed my “broken” bladder for several years.

Throughout my medical escapades, I still managed to begin working at the age of 17 and have ever since. I also have a bachelor’s degree in human services, a master’s degree in professional counseling, held a license in massage therapy, hold my Actor’s Equity card, was a Spina Bifida Association of Arizona Board Member, and was a Chief Executive Director of a holistic healthcare college all by the age of 33. You might say I have something to prove. And I do. Despite the most profound difficulties, I have found glimmers of hope and joy even in my most challenging moments. Those of us with disabilities CAN thrive… even if it’s working from your hospital bed (which I’ve been known to do!)

I had sepsis for the first time at age 34 and then again at age 38. Both times I had just left jobs and was starting at new companies. I only had a few days to recover and jumped right into my new roles. I wasn’t ready for the long, drawn-out, silent recovery from brain fog, hair loss, and overall weakness. It was difficult, but not as difficult as what I was about to overcome seven years later. 

It’s now my mission to share with others the link between Spina Bifida + Bladder Cancer. While I was growing up, I hadn’t met another person with Spina Bifida until I was in my late twenties. It was through the social media platform, MySpace. Those old enough know what I’m referring to. I loved it! And I loved my new friend with Spina Bifida. She opened up an entirely new world for me. And for that, I will be eternally grateful. Her name was Michelle. She is no longer with us. But her acts in advocacy for 

Spina Bifida will always be there. I hope to one day make a fourth of the impact she made during her 50 years of life. 

To learn more about Spina Bifida and my cancer journey, you can follow my blogs over the next few weeks and check out my next installment: 

Courage Beneath the Surface: Facing a Bladder Cancer Diagnosis After a Lifetime with Spina Bifida

Thank you, be well, and stay tuned for my next installment!

#SpinaBifida #SpinaBifidaAwareness #SBANYSCommunity #SpinaBifidaStrong #AdultWithSpinaBifida #BladderCancer #CancerAwareness #NBCF #FabOver40 #NewBeauty #ColossalImpact