In 2018, when I was advised to undergo genetic testing, I received two completely different kinds of advice. Some people told me, “Why go looking for trouble? Just carry on with your life.” Others strongly encouraged me to test.
When we learned that all five of us had VHL, I wished for a long time that I had never known. I missed my life before the diagnosis, before every scan, every protocol, and every fear attached itself to our future. There are still moments when I feel a hole in my heart from the weight of it all. Sometimes I catch myself thinking how much lighter life would have been if VHL had never entered our story.
It is an exhausting feeling. The kind that can easily make you bitter, angry, or consumed by fear.
But we made a choice very early on not to let VHL define our family. Instead, we focused on what we can control. We hold onto each other tightly as a unit, Fadi, Zane, Luana, Jude, and I, forever bonded by this very heavy cross to bear.
So, is ignorance bliss?
Absolutely not.
As painful as knowledge can be, I have zero regrets about testing. Knowing gave us power. It pushed me to learn, to search, to advocate, and to fight for information. That journey is what led us to enroll our entire family in a cancer study at National Institutes of Health, where VHL is understood at a level few places in the world can match.
Without science, our family of five could have become a family of one.
Our ticking bombs would have exploded one after the other, and Fadi could have lost us all. But because of science, because of imaging, research, robotic surgery, early detection, and medical advancement, we are all still here.
Not just surviving. Thriving.No, ignorance is not bliss. Reality is hard. Sometimes unbearably hard. But reality also gives us the chance to act, to monitor, to treat, and to manage a complex genetic disorder before it manages us.
