Although diagnosed in 2020 with Neuromyelitis Optica, a rare autoimmune disease of the central nervous system that primarily affects the optic nerves and spinal cord, and which has since left her paralysed, Sirene Paulse has not allowed it to defeat her.
She experienced various symptoms, including lower back pain and pins and needles in her right leg, which later moved higher up in her body over time. But in due course, it left her paralysed.
“I didn’t grasp what had just happened and the damage it entailed. Nor did I understand or realise then that the paralysis was incurable. Rather, I waited for doctors to administer a quick fix, after which I would be my old self again. The words ‘not curable’ didn’t quite sink in at first, and on confronting it my mind went into overdrive.” Paulse decided to write a book on her experiences with this condition, 72 Hours Changed My Entire Life, which was released in 2022.
“The inspiration was awareness,” she said, “awareness, so no other person has to experience or go through what I have been through. Early detection can save a life. The illness is autoimmune-related, and we as a society are not too familiar with such conditions or that they even exist. We don’t know the importance of looking after one’s immune system. Mine ganged up on me silently, causing massive nerve damage and resulting in paralysis.”
Staying motivated and not giving up has been key for Paulse; she is undergoing rehabilitation so she can walk again. “It is going extremely well, with assistance from my occupational therapist, Jo-Anne Koeberg, and my physiotherapist at Langebaanweg Air Force base.
This duo is the rehabilitation bomb squad. “For the first time in five years, I’m able to get up from my wheelchair into a standing position aided by a walking frame. This is huge. It was the long-term goal; being able to get up and stand again, my legs and feet bearing the bulk of the weight.”
Now, in Women’s Month, Paulse encourages women to believe they can achieve and overcome anything they put their minds to, and not give up when life gets tough. “Ensure you keep your mind, body, and soul healthy and creative, surrounded by people who add value.”
