Reborn dolls therapeutic for Ronel
Heinrich Beukes is raising funds for his wife to help her with her illness.
They say to never let anything get you down in life, but sometimes people just feel like they can’t see light, and this is exactly how Ronel Beukes (41) feels.
Ronel, from the South of Johannesburg, is fighting battles with her illness every day, and she shared her story with the RECORD.
How it all started
“I suspect the trauma started with two head injuries when I was still in primary school. The first injury happened in Grade Three when I was pushed off a high pavilion by a bully and fell on my head and broke my arm.
“The second injury happened in Grade Five when a cricket ball hit me on the front of my head,” Ronel said.
Five years ago, Ronel started experiencing stabbing pains in her head at random times. It lasted for a year and then it went away.
Then, every now and then it returned, especially in summer, but also in winter.
In May 2018 she started having seizures.
“The first seizure was five seizures in a row and my lips turned blue and my eyes rolled back. I went to our home GP and he suspected I was dealing with epilepsy,” she said.
Her doctor prescribed Epilizine.
“This made my condition worse, so I went back to my GP.”
More tests
Due to Ronel not having medical aid, her GP referred her to a State hospital for further examination by a neurologist.
At the hospital, she was examined by a neurologist and he felt it was not necessary for an MRI scan.
Instead, she went for a CT brain scan, where the doctor picked up calcification in the brain in eight different spots.
“The State hospital also did an EEG, but no results could be found. I decided to also go to a private neurologist who referred me for a temporal lobe ultrasound to check for temporal lobe arthritis, which came back normal. She also requested an MRI from the State hospital, which was refused. Blood tests were done and came back showing I am anaemic. This could be assisted by taking iron tablets,” Ronel explained.
The neurologist suggested that she sees an ophthalmologist in Alberton.
“He immediately told me the calcification on my brain is not normal and that I had a 90% chance to develop multiple sclerosis (MS), but I need to go for further tests and a lumbar puncture (LP), which we don’t have funds for.
“On top of the seizure, I have a condition that was diagnosed a few years ago called costochondritis, inflammation of the rib cartilage, which recently returned. It is an intense pain in the chest that makes my life even more difficult.”
In constant pain
She takes Epilim 500mg in the morning and 800mg at night and iron tablets to control her anaemia, but she still suffers from seizures. She is in constant pain, which has led to her suffering from depression. The Epilim medication is not working anymore.
“I am permanently depressed and feel so demotivated.”
She would get sharp stabbing pains in her head at different times daily. She feels tired most days and has no energy for anything.
“I also get convulsions and dizziness.”
One of her worst seizures ever was when she stopped breathing for a few seconds.
She knows when a seizure is coming because she starts getting a butterfly feeling in her stomach.
“It does not mean I will have a seizure at that moment, it could be anything between a day or a week before it happens. The later it happens the more severe the seizure is.
“Sometimes it feels like my eyes want to roll backwards. My body starts to shake and then the convulsions and stiffness start after that.”
Every seizure is different and ranges from three to 10 minutes.
“I do not lose consciousness but do forget what happens. After the seizure, I am very tired and want to sleep.”
Triggers of seizures
Due to her illness, she is not able to work nor have children.
Normal activities like bathing, cleaning and cooking are big challenges for her.
“I can’t go out at night because the street and car lights can trigger my seizures. I have to watch what I eat as most foods and sweet things cause stabbing pains in the head. This also goes for things I drink.
“I can’t handle loud noises and also have to be careful when watching TV for flashing images,” said Ronel.
“Stress also triggers seizures.”
She also has an eye condition which she was born with that can also trigger seizures sometimes.
Her life has been turned upside down
Ronel has been married to her husband, Heinrich, for almost six years now.
They have been together for 10 years.
“My husband recently took me to Cape Town so I can forget about my illness for a while and experience a form of normal life for a couple of days. Even though flying also affects me, my husband tries his best to take me on holiday when possible,” she said.
“I also can’t travel long distances as it is a risk for a seizure trigger. But sometimes I do take a chance to go out as it feels like I am in jail 24/7,” she said.
Heinrich is a full-time accountant at a corporate security firm and is also looking after Ronel.
“He is working from home due to Covid-19. He is permanently stressed about my condition and also stressed because he can’t provide the finances for the proper medical treatment that is needed. This also means his social life is not what it should be.
“Unfortunately, my illness causes a lot of strain on our marriage. I have developed a personality disorder. Due to my illness, we can’t even have family and friends over for dinner because I struggle to cope,” she said.
“Honestly, at this point, I do not have any motivation for anything. However, I am motivated by the support I get from my husband, mum and sister. My mum also looks after me when my husband is unable to. My pets are a good distraction and keep me happy and busy.”
Ronel is also grateful for her in-laws, as she lost her father about two years ago.
“I am also thankful for my brothers-in-law and sister-in-law, as well as my nephews.”
Coping mechanisms
One of Ronel’s coping mechanisms includes being a mum to three newborn dolls (Reborns), with a fourth ‘arriving’ soon.
The dolls help her to cope with her depression and infertility.
According to Ronel, Reborns are made especially for people who are depressed, who has gone through child and infant loss, suffers from infertility, grief, empty nest syndrome, anxiety, agoraphobia, dementia and Alzheimer’s.
“My Reborns provide a therapeutic benefit for me,” she said.
How you can help
Ronel need funds to be able to go for more tests and scans done so she can receive the right treatment for her illness.
“I need to go back to the ophthalmologist for further tests so they can find out if the calcification on my brain has spread more, to determine what causes my seizures and also an LP needs to be done to determine if it is multiple sclerosis.”
People who want to support Ronel can donate money via her Backabuddy page.
