Book recounts journey from darkness to light

3:51 p.m., Nov. 21, 2005--A little red notebook she carried in her purse for grocery lists and to-do reminders started Regina Roth on writing her book, The Darkness Is Not Dark: Overcoming Guillain-Barré Syndrome.

When her husband Roland Roth, then a professor of entomology and applied ecology at UD, was suddenly and unexpectedly stricken with Guillain-Barré Syndrome (GBS) in September 1999, the notebook took on a more serious role as Regina used it to jot down notes on what the doctors told her each day and left it for her children to add notes in Roland’s hospital room. Gradually, she broadened the notes into a diary, which is the nucleus of her book.

In the space of a few days, Roland went from numbness in his fingers to a Code Blue emergency when his heart stopped beating, followed by almost total immobility and hallucinations, before he began the long upward climb to recovery. GBS involves a loss of muscle control and paralysis due to nerve tissue degradation, when antibodies attack the myelin sheath of the nerves and even the axon, or nerve center.

Regina, a retired guidance counselor, recorded the effects of GBS and its treatments on her husband, and its effect on her and their three grown children--son Chad and daughters Sherry, who lives in Wisconsin and is married to Tom Hershberger, and Karen Aniunas, assistant dean of student services in the College of Agriculture and Natural Resources, and her husband, Dennis.

The diary records Regina’s own feelings as she encountered each crisis. Underlying the entries, she said, is her unwavering faith in God and her gratitude to everyone--family, friends, colleagues and UD students--who helped them through the illness.

The little red book was intended as a private diary with entries frequently ending in prayers. As Regina wrote, “Thank you, Little Red Notebook, for becoming a friend on this journey....” After Roland’s recovery, Regina was persuaded to publish the diary to help others suffering from GBS and their caregivers and also to bring GBS to the attention of family doctors.

“Early recognition and treatment of GBS are important, and diagnosis can be difficult. At first, the doctors thought I had had a stroke or a pinched nerve, until the symptoms indicated otherwise. GBS is not common, and one of our goals is bringing it to the attention of those in the health field,” Roland said.

Regina recorded Roland’s journey as he went from total helplessness where his eyes had to be taped shut so he could rest to rehab and eventually a wheelchair to almost complete recovery. During the early part of his illness, he was treated with plasmapheresis, which removes damaging antibodies from blood plasma.

Slowly Roland began to recover and, by Thanksgiving 1999, was able to be transported to Aniunas’ home for the holiday. Regina wrote, “There are no words to describe my deep thanksgiving for my husband by my side and all the spiritual and physical caring of so many people....Thanksgiving Day may just be a holiday on the calendar for some, but Thanksgiving for me, now, is every moment, every day.”

Regina and Roland Roth

When Roland’s stay in the hospital ended, Regina faced another dilemma. Their split-level home could not be adapted for a wheelchair. It became clear that rushing into selling the house and moving to another was not an option. When an apartment that was designed for wheelchair access became available, Regina and Roland moved in, bringing only the basics for the move. “I realized how we don’t need all these possessions and can do with less,” Regina said.

Regina also became the primary caretaker and nurse, which was tiring, but there were milestones as Roland began to walk with assistance, feed himself, work the TV remote control and blow his nose--all duly recorded in the diary.

Eventually, the couple sold their home and moved into a ranch house in June, but the timing was right and the house was right, Regina said. “A new chapter begins,” she wrote, adding, “Our winter is beginning to turn into spring--Thanks be to God!”

The good news now is that Roland has almost recovered. He returned to work and has just retired. For a retirement gift, he is joining faculty and students on a Winter Session study trip to Tanzania in East Africa. The couple said they are also enjoying their sixth granddaughter, who was born in October.

Looking back on their ordeal, both Regina and Roland said how grateful they are to the University for its support and for the concern of the University community.

“People didn’t just come once--they came again and again,” Regina said.

“My illness brought us both closer together, and we value the time we have together,” Roland said. “I have a different perspective now. When there are conflicts, my feeling is get over it and move on.”

To order The Darkness Is Not Dark, call a toll-free number at (866) 909-2665 or [www.xulonpress.com/bookstore].

Article by Sue Moncure
Photo by Karri Van Blarcom

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