Facing challenges, staying strong: Rustlers show strength in battling personal, family disease

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Katie Hodges

On the outside, Amie Kenzca’s life seems fairly average for a teenage girl. She is a saxophonist in pep band. She is an honor student involved in Leadership High School, and she has a best friend who she refers to as her “shadow.”

She also has multiple sclerosis.

Kenczka, a junior, was diagnosed with multiple sclerosis (MS) in January 2010. The diagnosis came after she began passing out on a daily basis.

The doctors originally thought that it was a heart problem, but then figured out her problems were brain related. After that, Kenczka got the diagnosis.

“I had no emotion whatsoever,” she said. “It was just so much to take in.”

Kenzka is one among many students and faculty struggling to balance health and taking care of those around them with health issues, and school or work.

“I was relieved. Going from cancer to MS was a huge relief,” Kenczka said. “I still cried. But I couldn’t tell if it was because I was happy or sad.”

 MS affects the central nervous system and changes the way nerve signals are sent to and from the brain causing multiple symptoms, including numbness and fatigue. It is thought to be an autoimmune disease, which means that the body’s immune system attacks healthy tissue.

“I can tell day to day whether my MS is acting up,” Kenczka said. Although she is supposed to take it easy when her MS symptoms flare up, Kenczka rarely does.

“I’ve gotten chewed out by my doctors,” she said. “School comes before me physically.”

Although Kenczka avoids working out on days when her MS is acting up, she tries to participate in as many activities as possible, including pep band.

“I go to pep band even if I feel like crap, but I end up paying for it in the end,” she said, adding that she can end up being tired and sore.

However, Kenczka tries to keep her outlook positive.

“Feeling bad about it isn’t going to do any good,” she said.

MS is a degenerative disease, which means that symptoms gradually worsen over time.

“It’s not going to get any better than this,” Kenczka said. “I try to enjoy as much as I can while I can.”

Her friends know that she does not let her disease affect her.

“It doesn’t seem any different,” Lizzie Ruperd, a sophomore and Kenczka’s “shadow,” said. “You can’t really tell that much; it’s not that big of a deal.”

“Since they’ve come out with the shots and the meds, people have dealt with it [MS] a lot better,” Kenczka said. However, the meds don’t stop the MS–they just slow it down.

Part of Kenczka’s daily medical regiment involves giving herself shots. The shots are supposed to be administered in fatty areas of the body, but Kenczka doesn’t have very many of those, so the shots end up bruising and stinging.

Some diseases require more than just daily shots. Ryan Schlosser can personally attest to this.

Schlosser, a sophomore affected by cerebral palsy, had surgery on both legs in March 2010. The surgery, which took Schlosser three months to recover from, involved having screws put into his feet and having metal braces on his thighs.

Schlosser returned to school in May 2010.

“I couldn’t move my body as well as I can now,” Schlosser said.

 Cerebral palsy is a disease that affects a person’s muscle control and the ability to move. It is non-progressive, which means that it does not get worse over time, and is caused by damage to the part of the brain that controls muscle tone.

After his initial recovery time, Schlosser returned to school but with a special schedule. Despite missing so much school, he is happy that he had the surgery.

Schlosser helps out as an office aide two days a week, but that comes with its own unique set of challenges, especially due to the motorized scooter Schlosser uses.

It is tricky to avoid hitting other people, and maneuvering through doors, he said. He also has trouble on the elevator, as his scooter originally had a large board around it.

Like many high schoolers, Schlosser is not sure what his future holds, although he hopes it involves missing less school. With his disability, he knows that certain jobs (such as construction) are probably out of reach for him, but that other jobs (such as at a grocery store with lots of room to move around) would be perfect.

A care givers battle

Parents of children with medical difficulties are also quick to worry about what the future holds for their children, and English teacher Jamie McGraw is no stranger to this.

McGraw’s oldest daughter, 10-year-old Katie, also has cerebral palsy. She was diagnosed when she was 18 months old after her mother brought her to a neurosurgeon in Helena upon noticing that she wasn’t at the same level as her friends’ children.

“I noticed that her vocabulary…She wasn’t speaking at all,” McGraw said.

McGraw describes the moment she got the diagnosis as one of the defining moments in her life.

“I just broke,” McGraw said. “Things changed instantly.”

McGraw said that before someone has kids, they worry about the “shallow things,” such as whether or not their children will be athletic, smart, and well liked. After she got the diagnosis, that changed.

McGraw said she now worries about what will happen when to Katie when she and her husband have died.

“Who will take care of her?” McGraw said.

It was also difficult for McGraw to tell her husband.

“One of the harder moments was having to tell my husband,” McGraw said. “The blow to him was a little bit harder.”

McGraw now balances work and Katie’s various activities and medical appointments. These include occupational, physical, and speech therapy, as well as eye doctor and dentist appointments.

“It’s all I really know,” said McGraw, who had Katie during her first year as a teacher. “I don’t really know having a job without her in the forefront of my brain.”

However, McGraw recognizes the compassion that having a daughter with cerebral palsy has given her when it comes to teaching.

“It has made me more understanding and compassionate,” McGraw said. “I am more understanding of individual students’ differences.”

Katie has also helped McGraw to be a better parent.

“I learned from her that children are really forgiving,” she said. “They love you unconditionally. [They] allow you to keep working to be a better parent.”

That is not to say that McGraw never struggles with her daughter’s disability.

“Why my child? I felt like I did everything right. She should have come out physically unharmed,” McGraw said.

“I was raised with the belief that if I worked really hard, I could achieve anything. I can’t fix her brain,” McGraw said. Despite this, she said that she can work to make Katie’s disability as easy as possible.

McGraw is grateful that she has her husband to support her.

“Sometimes I’m at a better place than others,” McGraw said. “When one of us is feeling discouraged, the other can play backup.”

McGraw is not the only teacher who has relied on others for support in times of trouble. Vocational transition educator Kathy Reed can also relate.

Reed’s father, Eddie Reed, who passed away in 2009, lived with Reed while he suffered from Alzheimer’s disease. While taking care of her father, Reed learned to accept help from her co-workers.

“I came to rely on my co-workers a bit more,” Reed said. “I don’t know what I would have done without [them].”

 Alzheimer’s is the most common form of dementia and a general term for loss of memory and intellectual abilities to the point where daily life is impacted.

“It was a life-changing experience,” Reed said.

In the beginning, Reed took care of her father alone, and just had to make sure that she stuck to a rigid schedule.

“You have everything laid up at night that you can possible have ready,” Reed said. “When you got up you could be on a system.”

Eddie also attended Easter-Seals Goodwill’s adult day care program.

“It was a huge God-send,” Reed said. “It was positive and he really enjoyed it.”

However it eventually Reed could no longer care for her father with a minimum amount of help.

“[It] got to the point where I couldn’t manage it like that,” Reed said. “Things slip a little bit at a time.”

Reed hired someone to come and make sure her father ate, got dressed, showered, and was waiting for the bus on time.

Reed describes taking care of her father as a positive experience. When her dad came to live with her, she was single, and didn’t know if she could adjust to having another person living with her. However, she eventually came to enjoy it.

“It made me realize how much I enjoyed having someone to come home to,” Reed said. “It was nice coming home to someone who cared about you.”

Reed also found joy in the midst of hardship.

“Even though it was a really difficult thing, I really enjoyed doing it.”

When her father moved in, Reed made it her goal to give him the best quality of life possible. One of the ways that she did this was by making special traditions for just her and her father as their relationship changed.

Friday nights were special, and Reed spent most of the week getting her father excited for them. They would eat a special dinner and change into their pajamas and watch different television shows.

“A lot of times it’s about what you pump yourself up to,” Reed said. “It changed the focus of how we did it.”

“I realized how special the small things could be. I tried to focus on the time we had together that we shared.”

“I still miss him a lot,” said Reed, who still cries when speaking about her father.

“I’m so grateful that I had the opportunity to take care of him. We had a lot of fun together.”

Growing up healthy

Another person to come out of a struggle with a positive outlook is junior Shelbi Agamenoni, who was diagnosed with leukima at age three before going into remission at age six.

“I try to look at it as a positive thing,” said Agamenoni.

Since her experience with cancer, Agamenoni hopes to become an oncologist.

“I’ve always been interested in the medical field,” Agamenoni said. “To be able to look at your patients and say ‘I know how you feel,’ that’s not a thing a lot of people can say.”

The day after Agamenoni was diagnosed with leukima, a cancer of the blood, her parents flew her to Seattle for treatment.

Because she was so young at the time, she doesn’t remember much of the experience except the scarier parts, such as spinal taps and medicine that made her throw up.

The one good thing she remembers is something she describes as a “treasure closet.”

“If you were having a bad day, we had a treasure closet,” Agamenoni said, adding that children could pick any toy out of those in the hospital’s closet.

Now that she is older, Agamenoni tries to avoid worrying about having a relapse, although it is harder when she returns to Seattle every two years for a checkup.

“I do worry sometimes, especially when going to Seattle,” she said.

Agamenoni tries to avoid making a big deal out of the fact that she had leukemia, saying that she doesn’t want people to feel sorry for her.

“If the subject of cancer comes up, I get quiet and don’t know what to say,” Agamenoni said. “It’s not something I say to people.”

Agamenoni feels stronger since going into remission.

“I feel like it was a challenge, and I feel like I was strong enough to get over it,” Agamenoni said. “I was constantly fighting. To appreciate the sunny days, you need the rainy ones.”