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Those of us with VHL understand that receiving a diagnosis of a rare genetic syndrome changes our perspective on life. We live under a shadow of uncertainty, striving to live with hope while cancer and tumors are present and possibly growing. We view the future with trepidation, striving to move forward with faith despite having witnessed the ravages of this disease on our loved ones, or concerns about the suffering of our posterity. This rare disorder presents many unique challenges and each one of us must navigate our way through this disease.
Several years ago I was nearing my late forties and was increasingly conscious of that “average life expectancy” that was drawing closer, I contemplated what was of greatest worth to pass on to my children. I soon realized that having VHL gave me a unique vantage point on life that unless I shared, they would never appreciate or understand.
As the project continued, I soon recognized that I had found my way through life and through this disease by turning to God. The most powerful lessons were the ones that impacted my relationship with Him. These were also the ones that refined my character and defined my life. Gifts of the Trellis was intended to be a private record for my posterity. As an explanation for the title I wrote, “I considered my life as a whole built on a trellis of tragedy. Yet it was through this framework of despair that I had come to know God. He had revealed Himself to me, covering a bitter lattice with sweet and beautiful mercies. My challenges had been my greatest teachers. They were blessings in my life—Gifts of the Trellis.”
My purpose in sharing my book with others with lifelong medical challenges know about this book is to encourage you to think about the challenges you have faced, and how you have navigated your way through this disease. And then I would ask you also to share your story.
