By Cathy Knutsen

My son has Neurofibromatosis, or NF, a genetic central nervous system disorder in which tumors can form on any nerve of the body. It can cause deformity, learning disabilities, scoliosis, vision disorders, mental disabilities, epilepsy, cardiovascular disease, and cancer. It is also the disorder which ultimately led to the death of his sister to liver cancer and his father to lung cancer.

My son is now 40 years old and has undergone five brain surgeries. As a child, he had difficulty in school and was placed in a special education class. He endured radiation therapy, speech therapy, physical therapy, occupational therapy, psychological testing, and bullying from classmates.

In the mid-1980s, we were invited to an NF symposium. There were doctors and specialists present and lots of pamphlets and other written material to further our knowledge of this disorder. There were also people there who were suffering from NF or had family members with the disorder. We were asked to take a seat among the semicircular array of chairs.

As people began to share their stories, there was optimism in the room. One man expressed gratitude for the symposium, a chance for others to learn and to grow; a woman was thankful for the doctors who were helping her child; and another proclaimed her faith in God for helping her family accept the unacceptable.

And then a man stood up, tears running down his cheeks, and he began, “I sit here listening to all of you being grateful and thankful and faithful. But that’s not me!” And then he shouted, “I HATE NF AND I HATE WHAT IT HAS DONE TO MY CHILD AND MY FAMILY!!” Everyone was stunned, but he had exposed the elephant in the room. All of us had that exact same feeling, wondering why these things were happening to us, to our child, to our family; all of us keeping this emotion hidden inside, while this man blurted it out with such conviction. He continued to speak, initially in anger, and then his voice softened in defeat and exhaustion.

It occurred to me in later years that this is the difference between someone in the throes of raw, painful grief and someone else, who has gone “through” it and weathered the storm.   This man’s venting was necessary. It was a way for him to release the demons and clear his mind for better thoughts. Those listening to him who had come through grief to the other side were reminded of their own (pain) when they were in his place.

If you have ever seen the movie, The Shawshank Redemption, there is a scene where Andy escapes prison via a sewer, trudging the muck and murk with all his might to get out. He emerges into a body of water that cleanses him—and he is free! He couldn’t get to the other side any other way, but when he finally emanated, his life could go on with new and exciting beginnings and adventures. Andy’s escape didn’t happen overnight, but he endured to finally reach beauty, optimism, fulfillment, sunshine, and personal satisfaction.

My son will continue his battle with NF for the rest of his life. His annual MRIs check for new tumor growth or the possibility that some he already has will become malignant. Doctors and hospitals are part of who we are. I live daily with anticipatory grief, but it doesn’t consume me. I won’t allow it! He is here now, alive, inspiring, teaching us willpower, strength, and courage, a gift to be treasured. And I will hold him in my heart always!

 

Cathy is a beautiful Iron Butterfly who gives us strength and hope.  We honor her and greatly appreciate her sharing her stories.