Anna Waller

@annamariewaller | contributor
I find strength and hope in hearing the stories of others.
Wesley Stein

What My Wife's Von Hippel-Lindau Syndrome Taught Me About Life

Crisp and neat. A rectangle. I never wanted this for a life. Then again, I never thought I’d be a janitor either. But I am a dreamer, after all. And while some dreamers are called the founder of Atari or chief executive of Apple, others are called the janitor. What separates me from those guys is the respective dream itself, and action. Action derived from motivation. When my wife Melissa was diagnosed with a rare genetic condition in 2005, my life was reset like a glitchy game of Pong ran on an outdated iPhone. My motivation suddenly shifted and the derivative action did too. It was called von Hippel-Lindau, or VHL, a cancerous syndrome that would cause tumors to form in up to 10 areas of her body. First, you take two of the seamed corners together in your left hand, folding the sheet in half, repeating for the other two corners in your right hand. The only treatment was surveillance. The first sight of a problem was with her sight. She had retinal tumors. Then a pancreatic tumor, benign. Then a brain tumor. Time to take action, motivation: fear. All the plans we had as a young family went out the window. Dreams had evaporated. The goal now was to just stay healthy. Now bring the four seams together so that they all align, folding the sheet in half again. Don’t worry about the round corners for now. We decided to abandon our lives, flee from creditors and move to the mountains. The mountains held a promise, a steady glimpse of beauty during the ugly times sure to come. The corners won’t align if you try to force them. Instead, allow the sheet to fold over itself at the seam so that when you bring them all together, your hand is covered in the corner “pocket” you’ve just created. The pocket should be as deep as the collected seams are long. In Colorado, we became naturalists. We had a 4-door sedan, a trunk full of camping gear and library cards. We spent the first few weeks sleeping in a tent, eating fresh trout from the river and crapping in the trees. We’d shower at the community recreation center and spent our days applying for jobs and housing at the library. It sounds romantic, a life on the run. Sure, we were just like Bonnie and Clyde. Only I wasn’t running from Johnny Law or even Countrywide Home Lending or HSBC Bank, I was running from cancer. I was running from a life I didn’t want. The pocket is important. You will use it to transform the orange-wedge shaped thing in your hands, into a foldable rectangle. Before you can fold the sheet for storage, you must first fold the sheet for proper folding. But Melissa had made a different choice than me. She decided early on that VHL would not define her as a person. She didn’t think about her life as one she would want or one she wouldn’t, she just saw it as life. And while I ran and hid, she dealt with it. She would have been a terrible Bonnie to my Clyde. She created a plan, organized this part of her life, built a support system and smiled on the way to get a laser shot into her retina. All I had achieved during this time was biting my fingernails into the quick. I was restless and worried. Then I started housekeeping. Using the seams in the pocket, fold down that portion of the sheet all the way across, so that you make a rectangle. If there is a now a rounded edge along the end of your rectangle, simply fold it inward as you did the top. I was between jobs in radio and public relations and finding it hard to imagine myself as anything. But Melissa had started a housekeeping business, cleaning for a few friends on the side, and I offered to help her one day. At first the only duties with which she trusted me were cleaning toilets and mopping floors. You have to start at the bottom. Now that you have a rectangle, simply fold it in half once (or twice for deep queen-size or bigger), then again into thirds. After a few weeks, I got better, faster. I was promoted to dusting and making beds. Soon, I was canceling job interviews so that I could go clean houses with my wife. And after a few months, we had decided to try and build a business together. The risks were low, we didn’t have much. But we had made a choice. We had decided what we wanted out of life. We wanted life, in all its messy splendor. With my wife’s example shining in front of me, I put my head down and followed. With meditation and inward-facing prayer, I saw a glimpse of what I could be — a me stripped away of this title or that accomplishment. I saw a me that was truly happy, bereft of an identity or defining quality. I stopped reaching for the abstract something that would validate my life, and I began maybe for the first time in my life, to simply live my life. All the desires I had fostered to be this or that had vanished, and I had somehow found myself content with scrubbing toilets. I was finally happy. I learned something from my wife I’ll never forget. She taught me that joy is not placed upon you because of circumstance, no more than is depression — it arises from within. I had spent so many years running, hiding from what I thought would be our life with a rare disease. When I finally stopped, turned around, and looked at it in the face, that life became something wonderful. We spent the next three years building our cleaning business and, with the rising popularity of Airbnb and other vacation rental companies, went from a dozen clients to around 75. At its peak in 2015, we would employ nearly a dozen sub-contractors and earn more income than we would have ever thought possible. And what’s more, I learned to fold a fitted sheet. In fact, I can fold a fitted sheet faster than I can fold a flat sheet. But that quality doesn’t define me, no more than VHL defines my wife. When you’ve folded the sheet into thirds, you should end up with a nice rectangle. Crisp and neat.

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Anna Waller

Learning to Let Go of Worry and Fear After My Daughter's VHL Diagnosis

Dealing with tumors in tricky places was not something I imagined when I became a mother. When my daughter was 16 months old, there was a large tumor wrapped around her little neck. When she came down with the croup, the tumor caused her to gasp for air. It was a tough situation, but it ended well. Later the surgeon said the tumor came off her neck beautifully as if it were in a plastic bag. When she was in elementary school, my fifth-grade daughter discovered a dark area in her vision. There was a large tumor on her retina. This was the first time I had heard of von Hippel-Lindau syndrome (VHL). Eventually a genetic test would confirm she had VHL. The VHL gene is a tumor suppressor gene. In a “typical” cell, the VHL genes from mom and dad help regulate cell behavior and prevent tumor formation. Somehow, my daughter’s VHL had mutated. When the VHL gene does not function properly, tumors can grow in up to 10 different parts of the body. This means we watch tumors, remove tumors and stay on the lookout for new tumors. Recently I thought about my role as a mom when my niece had a beautiful baby boy and under the newborn’s picture, she commented, “I vow to protect you forever and ever.” Emotion rose up in me and my whole being agreed. It is the sacred vow of a mother to her baby. The challenge was to protect my child from anxiety as we navigated doctors and procedures. It was hard to minimize anxiety when the doctor is looking likewise alarmed, telling you a large mass is growing where it should not. I remember sitting in the pediatric oncologist’s waiting room. My daughter, in her school uniform, was the picture of health doing her homework, eyes down to what was going on around her. During the appointment, the well-meaning doctor launched into a detailed explanation of oncogenes and tumor-suppressor genes. He drew out diagrams and pictures, which I have kept. It took an hour. There was no need to go back. He was not a surgeon. Treatment for VHL is often surveillance and surgery. When a tumor reaches a certain size, it is removed. My daughter is a model for researchers to understand how faulty VHL is involved in tumor growth. Already, VHL research has led to several new drugs to fight kidney cancers that include faulty VHL genes. My daughter is now 25 years old and in charge of her own life. There are MRI scans and doctor appointments and in between, she does not want to discuss the ever-present VHL syndrome. Attempting to protect her is no longer my role to play, although I do try. How I try is by staying up to date on what is happening in regards to VHL. The VHL Alliance has been a great support to me and many others. The Alliance is a clearinghouse of information and connections. Talking with others and listening to their stories can be a great source of hope and encouragement. Ultimately, letting go of worry and fear is required. Many times, often at night, I feel like I am right back to square one—scared for my daughter’s life. With faith and hope, I gently remind myself that nothing good comes from fear. All of us live into an unknown future. We can hardly imagine the moments of joy and delight that await us or what will in fact threaten us the most. We will continue to deal with tumors on a need-to basis. The VHL mutation will be a part of a much bigger story. A beautiful story that is unfolding with love and grace even as I write. Editor’s note: This story has been published with permission from the author’s daughter. We want to hear your story. Become a Mighty contributor here.