“A hero is an ordinary individual who finds the strength to preserve and endure in spite of overwhelming obstacles”- Christopher Reeves
In today’s world Cancer is a commonplace with debilitating effects, which not only attacks your physical health but also takes hold of one’s state of mind. VHL affects 1 in 36,000 people across the world, and I happen to be one of them.
My journey with Von Hippel Lindau (VHL) started for me in 1992 the year I lost my beautiful Mother Patricia (PAT), she was 42yrs old I had just turned 11yrs. Although her journey started way before that when she lost her mother at a young age due to kidney Cancer and her older brother to a brain tumor. Bythis time there was a pattern emerging with people’s health we and we had no idea what was to come, the challenges, the losses, and the generational grief a disease like VLH would bring. The family generation before me including my mother did not know they had Von Hippel Lindau, we did not know until after she died that it was even in existence. See I like to call VHL my “My Politician”, because it makes decisions about my life without any consultation from me, never taking my opinion or plans into consideration before it strikes and attack on someone I love.
If people do not know VHL is a genetic chronic tumor condition where in my family people develop cancerous tumors on the kidneys, pancreas, brain, spine, and adrenal glands. When my beautiful mother passed away it was because she had tumors on her kidney that had metastasized into her lungs. This rare disease runs cruelly throughout my family, my older sister Joanne had her first brain tumor at the young age of 18yrs and my other sister Edel had her first kidney tumor at 19yrs old, with cousins developing brain tumors at an even younger age. From an early age both my sisters suffered numerous brain, spine, kidney and adrenal tumors that would see them in and out of hospital from the start. Some operations were ‘easy’, meaning they would be in and out of hospital with a week. However, I have seen both my sisters suffer horrific trauma due to difficult surgeries, sometimes spending months in Intensive Care in Tallaght and Beaumont Hospital and sometimes even in the same hospital at the same time. When my older sister Joanne had her firstkidney removed her surgery was extremely complicated due to the number of surgeries, she had previous and any complication that could go wrong, happened she spent nine whole months fighting for her life in Intensive Care. It is hard to believe but she walked out of hospital after that, it took her three solid years in rehab and treatment, but she did it. She is and will always be the Ultimate Warrior for me, she had some challenges after she was on Dialysis 3 times weeks in the hospital, but she was living the life she fought for. Sadly, she passed away 5yrs ago at the young age of 44yrs, she will always be a legend within our family. My sister Edel also spent many years on Dialysis, and it really took a toll on her body and her mind. Just before Joanne passed away Edel was told that her kidney cancer had metastasized into her lungs, she was various treatments for a few years after and a year and half ago she went in to get a small brain tumor removed and she spent 4 months in intensive care fighting for her life. I lost Edel two years ago and it forced me to face the grief and trauma I had seen from this horrible disease from a young age. My lived experience of VHL is a series of unfortunate events, that never seems to end. I had my right kidney removed the same time Edel was in ICU at the end of her life, it is an experience that will be ingrained in my memory and my heart forever. Three days after I had my surgery, I was discussing end of life plans for my sister, I organized her funeral from my hospital bed.
After my mother passed away my two sisters took on the sole responsibility of caring for me even with there own health challenges. The pain of loosing a mother is something everyone must face but it doesn’t make it any easier. It has a ripple affect through my whole life. When she passed, we lost our security, our support, our guidance, and our warm hugs on a cold day it put al three of us on unstable path trying to find ground again. But my sisters were my whole world, we loved each other deeply and looked out for each other like no other could. We had a bond that was full of love, deep connection and we understood each other like no other so watching the trauma and injuries they both faced left scars that will never heal.
See psychical scares from VHL will heal, stiches will be removed, hair will grow back, skin will grow over and cover the cuts, but the Psychological and psychosocial affects will enter deep into the mind and hearth forever. The diagnosis and treatment of VHL remains frequently a traumatic experience for families going through it. Along with the stress of the initial diagnoses there are frequent medical appointments, invasive procedures, unpredictability in cancer progression, as well as moving through the phases of the illness trajectory, namely active treatment, remission, relapse, and eventerminal. VHL has had devastating physical, financial and emotionally devastating stress and trauma highlights the fact that from the outset, people face many challenges at both the initial stage of diagnosis and far beyond.
Since both my sisters passing, I have been in a space of reflection and learning, it changed my entire world, my whole family passing. I have had to unlearn to learn, I have had to UNLEARN to push my story away and emotions down and instead learn the art of connection with people outside my immediate family. I have decided to own my story in order towrite my own ending to my story. I still have medical challenges that I fight daily, I currently have a tumor on my other kidney have recently had my adrenal gland removed and other tumors on my pancreas with many cysts in other vital organs throughout my body. But I push through every day likemy sister always said, that all we can do and live to the fullest as much as you can in a Global Pandemic, some days are sad days, but a lot are funny, belly laughing days with people around me who love me dearly. I have a great job where I get to great things in the world to make education equal for others and I Love it, great friends, and a supportive family full of nephews, nieces, brother-in-law cousins and aunties that support me through all the challenges. My everyday life is about meaningful connections, I aim to show empathy instead of criticism, listen instead of talking over and my reach out to people is meaningful instead of a generic ‘hello’. I don’t know the end to my story, but I am resilient, determined, and come from a long list of ‘Warriors’, but I do know there will be laughs, singing, probably some dance moves from time to time but meaningful.
There are 300 million people in the world with a Rare illness and they all have a story, this is just mine that I share take from it what you need.
