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Learning to live again: Rare brain disease changes life for Grangeville woman


Michele Waite works at the Grangeville Centennial Library as an assistant library director. She said she is glad for her part-time job working with the public, and that it has allowed her to help recover — and continue to rehabilitate — following brain surgery for a deep rooted cavernous malformation angioma on her brain stem.

Photo by Lorie Palmer
Michele Waite works at the Grangeville Centennial Library as an assistant library director. She said she is glad for her part-time job working with the public, and that it has allowed her to help recover — and continue to rehabilitate — following brain surgery for a deep rooted cavernous malformation angioma on her brain stem.



— In 2002, numbness and tingling on the left side of her body, and particularly her face at first, made Michele Waite think she had a tooth mishap.

“I’d recently been to the dentist, so I thought maybe a nerve was hit,” she said.

Waite was living in Nevada at the time and when her symptoms didn’t let up, her doctor ordered an MRI, which immediately showed an abnormality in her head.

Many MRIs and a referral to a neurologist finally led Waite to be diagnosed with a deep rooted cavernous malformation angioma on her brain stem.

“It’s basically a coagulation of blood vessels,” she explained.

Waite was told her condition was inoperable, so she and her husband coped with her condition and continued to live their lives. She became pregnant and in 2004 gave birth to twins Ryan and Anna.

“It was considered a high-risk pregnancy, and I had to have a C-section as to not place undue pressure or strain on my brain,” she explained.

Waite felt somewhat resigned as she went on with her life, always wondering in the back of her mind “if today would be it —,” the day her ailment would take her life. She lived with migraines, tingling and other symptoms and pain until they came to a head in 2009.

“I felt what seemed like a rushing of cold water running over me and the pain was incredible,” she said.

She was heavily medicated for migraines and then due to the horrible side effects, decided to go cold turkey off all meds for four months.

“It just hurt too much at that time,” she said. She was now referred to a Stanford neurologist.

This surgeon’s take was different than her previous doctor’s: He wanted to immediately perform surgery.

“At first I said no, I was too scared,” Waite recalled. “But he said the angioma had already bled at least three times, and one more little bleed could cause me to have a stroke and I would die.”

She relented, meeting with the surgeon on Monday and having surgery the following day. He removed the entire angioma on a 12-hour operation that required 25 staples in her head.

Her sister flew in from Pennsylvania to be with her while her children stayed with their father.

The angioma was wrapped around her optic nerve and the doctor feared she may be blind after surgery.

“But I woke up, and I could see,” she smiled.

Rare Disease Day

Rare Disease Day is celebrated the last day of February each year and is set aside to bring about awareness of the many “invisible” diseases that affect people across the nation.

There are 7,000 rare diseases and disorders that combined affect 30 million Americans – one in 10 – of which more than half are children.

For 95 percent of these diseases, there is not any treatment or cure.

The theme for Rare Diseases Day 2017 is “Research.”

Log onto www.rarediseaseday.org

However, waking up was just the tip of her rehabilitation. She couldn’t walk or talk. She spent weeks learning to move again and had to use a walker.

She read to her children to reintroduce her brain to words. As time when on, she continued to volunteer at school and read in small groups, which helped her redevelop her lost speech and language skills.

Waite also took on pen pals from around the country, which forced her to write, an ability she had all but lost following her surgery.

Though she has now gained back most of those skills, and is grateful she had the surgery and is not a “ticking time bomb,” it has not left her unscathed.

Chronic Pain Syndrome (CPS) plagues Waite (and most patients of brain surgeries), affecting mainly her left side.

Though she has dealt with dark days of depression, she said she has learned to live with her CPS.

“I know when I can operate best – mornings – and I know what I can do,” she said. “And I never want anyone to not do something just because I cannot.”

There is no pain medication to change or lessen Waite’s agonizing discomfort, so she simply does not take any. She uses heat and elevation and tries to plan most of her activities for mornings and afternoons.

“I don’t complain,” she teared up. “I shouldn’t be here, but God allowed me to survive. I just want to raise my kids, to get them through high school. That’s a privilege.”

Two years ago, she and her children moved to Grangeville to live closer to where her ex-husband now lives, Harpster.

At first, she worried about being too far from large medical facilities, but she said she now craves the small-town life.

“It’s quieter, it’s not so crazy. I function better here. I love it,” she smiled. “I feel calm and I have met wonderful people here.”

Just more than a year ago, she began working at Grangeville Centennial Library as assistant librarian, a job she said is perfect for her.

“It allows me to keep up with my public skills and be around people,” she said.

Although she understands her life will never be the same – she has a college degree from UNLV and previously co-owned two businesses – she also knows every day, week, month and year are milestones.

“I have been given a gift and I have to use it,” she said. “To love, to try, to help encourage others.”

She said the prayers of her family and friends have been priceless. No amount of chronic pain or lack of health insurance funds can change that.

“I am a blessing,” she smiled.



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