Faces of HD

Life is a series of steps. One of the hardest moments of my life came in the fall of 2008, when my husband Tim sat me down and told me the impossible news: I was showing signs of Huntington’s disease. My brother and I had a 50/50 chance of inheriting HD because our father had the disease. Tim knew the subtle symptoms. His heart sank when he saw me repeat the same movements as my father. My mother had also noticed my symptoms. This is called a family diagnosis.

HD is a genetic disorder that my father bravely battled for 24 years. HD affects the body, mind and emotions. Some of the symptoms are a loss of muscle control, uncontrolled movements, a decline of mental abilities, erratic behavior and dementia. My father worked as a CPA and manager for many years. When he was diagnosed in 1985, he couldn’t do simple math equations. His neurologist had him stop working and driving at once.  HD slowly robs you of your ability to walk, talk, swallow and take care of yourself. You are robbed from your loved ones, and sometimes you lose them too. I grew up understanding that my mother’s faithful love for my father grew out of her faith and trust in God. I also desired to know God and trust Him. I was 24 when my dad was diagnosed. After that, I tried not to be paranoid when I dropped something, forgot a name, or lost my balance. I chose not to be tested for HD since there were no treatments at the time. I frequently prayed that no one else in our family would develop HD. I had to live by faith, not in fear.

It wasn’t easy that day Tim sat me down. It was so hard to hear that I had the symptoms. I was in complete shock. I lost sleep for many nights with so many questions and emotions. I was afraid. I recalled the MANY times when I had lost my balance, fallen, hit my head, and spilled and dropped things. I would forget words and names and had trouble with short term memory. I asked my son Luke over and over what he wanted for lunch, but couldn’t remember his answer. We decided to tell Luke about my HD symptoms over Christmas break: another impossible conversation. He had noticed my falls and memory issues. The hardest thing was knowing that Luke had a 50/50 chance of inheriting this terrible disease from me. So now he had my illness to worry about and being at risk himself. That’s a lot to put on a sixth-graders shoulders.

Shortly after the diagnosis, I left my career as a physical therapist. That week, my Dad passed away from HD. That month, my older brother started showing signs of HD. Another impossible conversation. Another family diagnosis.

It has been a slow process of grieving my diagnosis and symptoms. There were many Sundays when Tim and I would cry all the way through worship. I never felt abandoned by God. I knew he was holding me in His hands. He led me to the Psalms and Isaiah for peace and comfort. I read about Jesus healing and power and hope. I had to decide — would I really believe Him in the midst of my hardships? Yes! He had been so faithful to me for 50 years and I knew I needed Him more than ever. Many couples fall apart after an HD diagnosis, but God has held Tim and I together. Tim pulled the perfect surprise at our 20th anniversary last summer in Denver. We renewed our wedding vows. Tim also vowed to take care of me and not place me in a nursing home. Our 16-year old son Luke ministers to me. I know he has had to grow up in a hurry. But I love hanging out with him and every day he gives me a million bear hugs. I am thankful for friends. They have stepped in and offered Luke rides to school when I lost my ability to drive. They have mentored Luke and minister to our family. I look forward to September, when we join in the HD walk in Portland. It makes me smile knowing that I’ll see friends there every year, rain of shine.

As believers, our lives are never left up to chance. God uses every bit of our life experience to grow our faith and patience. He desires for us to claim every bit of our spiritual inheritance, as He gives us Himself. Psalm 16:6 says, “The lines have fallen for me in pleasant places; indeed I have a beautiful inheritance.” As I look back on my life, I can see his hand every step of the way.

My name is Amy Hilgers. This is my inheritance.