Botha’s resilience advantage

For Cindy Botha (47), teaching was more than a profession.

It was about connecting with children and encouraging their creativity.

A teacher and former head of department at Cimbembacia Primary School, Botha particularly enjoyed telling, reading and writing stories for her learners.

“Everything is about creativity,” she said. Today, creativity has become part of how she survives life with chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), a rare neurological condition that affects the nerves and can cause severe weakness and paralysis.

Before her diagnosis, Botha enjoyed camping and hiking with her partner, including trips into the Namib-Naukluft Park. It was during one of those trips that she first noticed that something was wrong.

She struggled to get up from a squatting position and later began experiencing numbness in her toes.

Botha initially blamed her symptoms on a change in medication.

Then her legs began failing her. While taking new parents to their child’s classroom, she climbed a flight of stairs and suddenly could not lift her legs.

“I was thinking, ‘what is wrong with me?’ But at that stage, I didn’t think it was anything serious,” she recalled. After visiting two general practitioners, she was eventually referred to a psychiatrist, who suspected a neurological problem and sent her to a neurologist. Botha was initially diagnosed with Guillain-Barré syndrome and received five days of intravenous immunoglobulin (IVIG), recovering quickly.

But three months later, the symptoms returned. The relapses became more frequent, and, by August 2023, steroids, rituximab and plasmapheresis had failed to provide lasting relief. Remembering vividly, it was on 13 November 2023 when she stopped walking.

By 19 January 2024, the paralysis had spread to her neck and she struggled to breathe. Botha was rushed to the intensive care unit (ICU). “Not moving at all was terrifying,” she said.

“The pain, mixed with the quadriplegia, was just horrific. Having a machine breathe for me was one of the worst experiences of my life. I was in this glass room in the ICU, and I had absolutely no control over anything,” she added. For months, she depended on others for almost everything.

“Being completely dependent on somebody for everything is incredibly difficult,” she said.

“There is a loss of dignity that comes with not being able to do things for yourself,” she said. IVIG eventually became her lifeline. At one point, she needed treatment every seven days. “I would go into hospital, get my treatment, get a little bit of strength back and then start losing it again,” she narrated.

Her partner stopped working to become her full-time carer. “He basically started living my life for me,” Botha said. The couple even had to improvise ways of getting her into a car.

Using a strong leather belt around her waist, her partner would help lift her from her wheelchair. “It sounds crazy now, but it worked like a charm. That is what I have learnt about this whole journey. Sometimes, there isn’t a textbook solution. Sometimes, you have to look at the problem and say, ‘okay, how else can we do this?’ she said.

One of her happiest moments came when she was finally able to sit in a wheelchair after months in bed. “I cannot even explain the happiness of sitting in that chair,” she said.

“When you have been lying in a bed and unable to move your body, sitting up feels like you have conquered the world,” Botha shared.

In June 2024, she started slowly regaining strength through physiotherapy and biokinetics. The couple later remarried at home in an intimate ceremony witnessed by their son and Botha’s sister.

Although the ministry of education medically boarded her in 2023, Botha gained a different perspective on life.

“I lost my job. I lost friends. I lost a lot of things that I thought were important. But I gained tenfold more,” she said. Her IVIG intervals have improved, reaching about 25 days at one point. She can now walk short distances with support, although pain and mobility problems remain. “I still have physical pain. My feet are still a problem. Mobility is still difficult, and there are days when I am sad and angry. But I can’t complain for too long because I am supported and I am creative. If I can learn to brush my teeth again as an adult, then I can do anything,” she continued.

Botha calls on people living with CIDP and rare diseases to support one another.

“This is not about me. This is about forming a community. We need to support each other and not go through this alone,” she said.

She is affiliated with the GPS CIDP Foundation International and the Alliance for Rare Diseases Namibia, which she says provide platforms for people to share experiences and knowledge.

mkambukwe@nepc.com.na

The post Botha’s resilience advantage appeared first on New Era.