One year ago, Wichita mom Jenny Wenzel’s family was falling apart.
Her 11-year-old daughter Kate was experiencing suicidal thoughts on a daily basis. While her daughter and her twin sister, Jane, have been treated for anxiety for several years, the talk of suicide was something new and downright frightening.
“I starting seeing signs of anxiety and OCD [Obsessive Compulsive Disorder] when they were 5 years old,” said Wenzel, 40, recalling how it was a quiet family matter and wasn’t something she was advertising with her friends. “Kate would wash her hands a lot, and I noticed her spitting on her hands because they were dry, and soon her hands would start to smell. It was classic OCD. I saw it early and got them into a therapist.”
Wenzel recognized those early signs of OCD in her young daughters because she herself suffers from the same disorder. “I went through a lot myself, and at the age of 29, I bottomed out. I wasn’t diagnosed until I was 29 years old, but I know I had the symptoms at age 8,” she said. “You didn’t talk about it back then. I would have these weird thoughts and wash my hands a lot. So I definitely recognized it in my daughters.” until October 2014, the girls were doing OK managing the ebb and flow of a mental illness that dominated much of their young life, but then something changed drastically.
It started with a trigger. As the nation was glued to the television watching the Ebola virus come to America last year, both Kate and Jane’s obsession with getting the Ebola virus triggered a downward spiral that rocked the Wenzel family to its core. Nervousness and anxiety gripped Kate. Her hands were raw from the hand washing. Going out in public was too hard. Driving by a cemetery would put Jane into a panic mode. This led to screaming matches and temper tantrums and then the words that Wenzel will never forget hearing from her daughter. “Kate was afraid she was going to kill herself and not mean to do it. Her brain was telling her that she felt like she wanted to die, but deep down she didn’t and she was scared,” recalled Wenzel. “The ball had dropped and was rolling downhill for us as a family, I knew this was a total OCD moment ,and I knew we needed help fast.”
To make matter worse, the Wenzel family drove to San Antonio for Thanksgiving and had to drive through Dallas to get to their destination. Kate knew Ebola was in Dallas and their drive through the city, as well as spending the holidays in San Antonio led to a very miserable experience. “It totally psyched her out,” Wenzel said. “She was too scared to use the public bathrooms, too scared to eat things. She would completely tear her food apart. A lot of her compulsions were needing reassurance on everything. She would constantly ask me, ‘Mom could this have Ebola’ she needed to be constantly reassured. I was so strung out.”
By Christmastime, the entire family hit rock bottom. both girls were barely functioning, as well as Wenzel and her husband, Jason. Jane was also experiencing extreme symptoms similar to her sister. They could no longer go to a movie theater because of their fear of lice and germs on the chairs. Kate could no longer use a public restroom. bedtime took forever due to constant worrying and obsession. both girls were doing odd bedtime rituals, where they had to go through the same routine every night, including how they lay in bed, drank a glass of water and prayed. “OCD was robbing us of everything we usually enjoyed,” Wenzel said.
After spending time with family in Colorado, Wenzel’s parents knew the family was barely surviving. “My parents, who are usually around us a lot, hadn’t spent 24 hours at a time with us like they did in Colorado, and they could see we were drowning as a family,” Wenzel said.
Wenzel knew they needed help in order to save their family.
What she discovered next was even harder than situation she was facing at home. There was no local help available to her. “If you don’t have the right help, you feel helpless,” she said.
A substitute nurse at their family pediatrician office once told them to go to the local emergency room and the girls’ therapist told them there was nothing more she could do. Wenzel knew that an emergency room was not the answer for OCD. When Wenzel approached the girls’ psychiatrist about helping them more, she hit another brick wall. “I was basically told that the girls had the most severe case of OCD that they had ever seen,” she said.
With no direction from the local medical community, Wenzel chose to take matters into her own hands. She started researching OCD treatment programs around the country. While there was anxiety program in Kansas City, she knew that what her girls were needing was a treatment program that was specifically directed at childhood OCD. “I was telling my parents about treatment programs around the country, and they have an RV, and they told me I could take it anywhere and get the girls the treatment they need.” Wenzel was able to open her search across the country. “It hit me square in the face that the wealthy definitely have the advantage as a lot of these treatment centers were private pay and did not take insurance,” she said.
One call she made was to the Emma Pendleton Bradley Hospital, the nation’s first psychiatric hospital devoted exclusively to children and adolescents. “My first thought was no way are we going to Rhode Island, but the moment I called them I knew they were the one,” she said. “The first person we spoke to was not a receptionist, she was a case manager for the OCD program. The questions she asked me made me understand quickly that she knew exactly what she was talking about.”
The Bradley Hospital had an intensive family-driven OCD program. They explained to her that they would incorporate the entire family into the therapy and then it was up to them to go home and continue the therapy. This March, the entire family, including Wenzel’s parents and dog Millie, packed their lives into the RV and made the journey to Rhode Island.
“When you look at your babies when they are born, you never dream that you would be taking them to a psychiatric hospital,” she said. “but we knew we had to do whatever it was that we could for them.” The girls were enrolled for 10 weeks in a specialized program called Exposure with Response Prevention. This is a documented treatment designed to treat all types of OCD the Wenzel girls were dealing with on a daily basis. This treatment makes the patients find their greatest fears and go live there. OCD is about the fear of the unknown. For Kate, they decided to tackle her fear of public restrooms. The therapist stood with Kate outside a public restroom on the first day. “They asked her to rate her fear by standing outside the restroom door, and it was high,” recalled Wenzel. “They were exposing her to her fear slowly. With OCD, you are feeding the monster and it keeps coming back. .... but with Kate, she was ready to kick OCD’s butt.”
And, she did. by the end of the program, the entire family was celebrating inside a public bathroom when Kate was able to walk into a stall comfortably and actually take a Chex Mix off the toilet seat and eat it. “We were cheering, it was huge celebration,” Wenzel said. “Now, we will never eat a Chex Mix off a toilet seat again, but it showed her that nobody got sick and died.”
Both girls made tremendous progress in their ability to overcome their fears. The activities they once couldn’t enjoy like going to the movies, they were slowly incorporating back into their lives. By the end of their treatment, it was time to come home to apply what they have learned. before they went home, they took the girls to New York City as a treat and to also apply some of the things they learned. “They got into subways, walked around, went to public restrooms,” she said. “We were conquering this.”
After being gone for almost three months, the Wenzel family came home to Wichita a different family. They understand their girls’ OCD will never be cured, but now they had the tools to control it. However, Wenzel also saw something in her girls that made her even more proud. They were not embarrassed about their OCD, in fact the family was determined to break the stigma that is often associated with mental illness.
“They are not embarrassed one bit. They own this, and I am so thankful for that,” Wenzel said. “We are choosing to break down those barriers. People with OCD are no different from people with diabetes. It is a biological problem. OCD is a chemical imbalance in your brain. Would you just tell a person with diabetes to just lower their insulin on their own without medication? So you don’t tell someone with OCD to just relax and make it go away.”
Wenzel is committed to sharing her story with people who are also suffering from OCD. She is considering teaming up with a local therapist and bringing the treatment that saved her family to Wichita. She has also answered many phone calls from area physicians and concerned parents spending hours detailing her journey. She finds herself both thankful and grateful for the journey they have been on the past year. “The Bradley Hospital saved my family, and I truly believe that God blessed us and brought us to the right place,” Wenzel said.
Today, one year from that miserable Thanksgiving the family endured, she recalled an incident that just happened outside her kitchen window. Kate was outside on her scooter and fell in the street. She got up, brushed herself off and went on with what she was doing. A year ago, that incident would have sent Kate to her room for a week worrying about germs and death, but today she was just a young girl brushing off dirt on her knee.
“We changed the course of their life with this treatment, and we are so thankful,” Wenzel said.