By Mindy Irish
It is has been a long-time desire for Bev to document her journey with Huntington’s Disease and as the days carry on, she wants to make sure these moments are captured in writing. She and I have the privilege of sitting down in person together every couple of weeks to talk and question about the past, the present and the future. These posts are her story-her challenges, fears and successes written down to share, celebrate, remember and educate for those who know her and even those who don’t. Stay tuned every couple of weeks as we add more to the story about this amazing woman!
Bev Hartig is a wife and mother living in the heart of Hamilton County in Indiana. She was adopted from birth and had the opportunity to reconnect with her birth parents while in her late 20s. Soon after, it was discovered that her birth father carried the gene for Huntington’s Disease and was just starting his journey with the degenerating disease. Bev knew she had a 50% chance of inheriting HD, so she chose to face the facts and get tested. And the devastating results were positive that she, too, would eventually have the same experience with Huntington’s that her birth father was having.
For the next 10 years she kept this diagnosis a secret from many in her life. She feared losing her job or the experience of discrimination from having the disease, so at the time it was just easier to keep it quiet. Getting diagnosed in the late 90s, she didn’t have symptoms until some four or five years later, so the pain and discomfort at that time came in the mental anguish of hiding something so large from nearly everyone she knew. She was able to attend support groups early on, but it was hard to find anyone to relate to who was of similar life stage and advancement of the disease. Many were years older and much further along with their symptoms, so it just brought on more fear and anxiety than help to her. Additionally, there was little online support or stories of others with HD, so she knew at that time that eventually she wanted to get her story out there so others could understand and possibly relate. It became her hope that her story would make a big difference in the world. But, in all this, she still lived in silence.
Bev and her husband Bob eventually moved to Fishers, Indiana, but Chicago still felt like home. In time she was making more friends in the area and they welcomed two children to their lives, Katie in 2003 and Ryan in 2004. As signs of the disease started to appear, Bev knew that keeping it a secret was no longer an option. Even more so, her desire to raise awareness, education and funds for a future cure was growing, but how could she do so when no one around her knew what she was secretly facing? So she embraced the fact that silence was no longer an option. It was time to share out about Huntington’s Disease!
In late 2009, she sent notices to many of her friends and invited them over for an important announcement. Serving beer and chili in the basement, near 50 people gathered to support the Hartigs for what Bev called her “Coming Out Party”!
“I shared my story, informed everyone that I have Huntington’s Disease and they were blown away, yet supportive at the same time. After this event, I so wished I would have come out about it much sooner!”
After the party, they sent out forms asking friends and neighbors if they would have interest in joining “Team Bev” to establish a committee to launch an annual fundraiser towards finding a cure for this disease. 16 people replied and roughly 12 ended up taking spots on the inaugural steering committee, developing plans for an annual event to raise funds for HD research. It warmed Bev’s heart to see how so many people could come together, using their gifts, connections and resources to creatively plan for this event.
“After we created the Foundation, this finally became home to us!”
Eventually, Bob and Bev realized the possibilities of this event and formed The Bev Hartig Huntington’s Disease Foundation, Incorporated. Their first event was held in the spring of 2010 and drew near 200 people and upwards of $80,000 in donated funds! The steering committee continued to meet November through April of each year and created themes for each of the subsequent annual events. “Derby”, “Mardi Gra”, “Fiesta” and a planned “Hoe Down” for 2014 followed suit, raising between $80,000 to $150,000 annually at each gathering. This ticketed event is held at a local country club and involves a silent auction with donated goods and services from many local businesses, dancing, a live auction, a heart-felt share out from Bev and Bob, food, spirits and fun. This truly is a night to celebrate Bev and spread the word on her story to raise awareness for a greater cause.
Bev’s dream was coming true. She stepped out of her silence, drew a team together, and is making an impact of hope towards finding a cure for future generations. She realizes she won’t see a cure in her lifetime, but her passion is to use her life’s story to raise funds towards the cure for those with HD in generations to come. If her children end up with the disease, she is making it her mission that they won’t have to endure what has impacted her life. Together with her, we’re all hopeful that her life’s story will bring about a cure!
So as of March 2014, where is Bev now? What does a typical day look like in her life? In late 2013, her symptoms had progressed and the doctors determined that Bev could no longer drive. Each time a new symptom sets in and intensifies, she grieves the loss of life as she once knew it, a life of more independence and freedom to go about as she pleased. An online sign-up calendar was established and people that know her can sign up to bring the family a meal, spend time with Bev and drive her where she needs to go. Bev now relies on a hired driver a few times a week and the willingness of friends to help get her to appointments, the grocery and errands in her day. She has daily hired help for after-school hours to help with the children and evening tasks around the home.
“Losing my license in my forties makes me feel horrible and frustrated. That is not something that happens to people my age, that seems like something for the elderly. I long for the time where I would just jump in the car and take Ryan to DQ for an ice cream. It’s the little things I miss!”
While much is changing and each day looks different, Bev makes it her goal to get to as much as she possibly can. As she sat dressed in her tennis gear during our talk together, she had just returned from one of her twice-weekly tennis lessons with friends. The weekend before she and her family took to the slopes of Colorado, skiing together as they love to do. Bev and Bob did notice on this trip that her balance was the most affected since their last ski venture….but she is still out on the slopes making memories and loving every minute of it!
“I won’t let much stop me! I feel we should always keep trying because the day I stop is the day I give in to the disease.”
Each time a new symptom sets in, she grieves a little more and gets really anxious about the situation. She has not been depressed to the point where she wants to stay in bed or just lay on the couch, but rather the progression of the disease brings out anxiety for what is to come and frustration for what is lost. Her current symptoms include increased twitching in her hands and feet and more caution and reserve in her personality in social settings. Amidst all this, she still takes on each day and makes the most of it, offering a huge hug and gorgeous smile to anyone that comes her way!
“I’m choosing to power on because I need to be a wife and a mother and it’s my daily passion to find a cure for Huntington’s Disease so my kids and their generation will never, ever have to endure this!”
Stay tuned every couple of weeks as we update on Bev’s life as an Overcomer, living for the purpose of using her story to impact and change lives for the future! If you desire to contact her, you can reach out to her on Facebook HERE or by email at email@example.com