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Listeria outbreak survivor tells how illness changed perspective on life

foodsafetynews 2020-02-28
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A woman who was hospitalized for two months in the Listeria outbreak in South Africa has shared how illness changed her perspective on life.

Beulah Rhode (Roberts) started experiencing flu-like symptoms and felt constantly fatigued in mid-May 2018. She was in the hospital from June to August. In July, she went into a coma and was on life support until late August 2018. Tests while she was in the hospital were positive for listeriosis. After waking from the coma, Beulah had lost the ability to speak, read, write, and walk.

The listeriosis outbreak began at the start of 2017 and was declared over in September 2018 with 1,065 confirmed cases and 218 deaths. It was traced in March 2018 to a ready-to-eat processed meat product called polony made at a plant in Polokwane run by Enterprise Foods, which is owned by Tiger Brands.

Visits to three hospitals
Beulah, who lives in Cape Town, saw two doctors who diagnosed her with a slight fever. She took a week of sick leave but her mother, who is a theatre nurse, convinced her to go to the hospital.

“I was feeling tired all the time like I had the flu. I saw the GP before I got sick because I said why do I feel like I have the flu but I’m not really flu-ish? The first hospital said you’re fine you’ve probably got a bit of flu. At the second hospital I went into the emergency room and doctors told me the same thing. They said maybe I have the flu but I was like no it is not, something felt different,” she told Food Safety News.

“When I went to my house, my mum called and said I want to check on you as you’re not feeling or looking well, then she took me to a different hospital and my journey with listeriosis happened.”

The 35-year-old was in hospital for three months and physical rehab for two months to learn to walk, talk, read, write and how to use a knife and fork again. She was discharged in October 2018.

“That was very frustrating as I have always been motivated and able to do everything for myself. In my life before I could take my three dogs and go and walk with them. I don’t have the physical ability to do this the way I used to before. After rehab I was at home for five or six months and then the company I was working for gave me temporary disability for that period I was not working,” said Beulah.

“During that time I was thinking would I be able to do my job again because the listeriosis affected my brain. I realized it was so difficult because I couldn’t send a text message from my phone because of the spelling of a word. I have a bachelor’s degree in law, I was enrolled to do my Master’s degree and suddenly I couldn’t spell a simple word.”

Going back to work
Beulah said her job as a qualified advocate involves a lot of responsibility and there was no replacement cover in the time she had off. She returned to work in February 2019.

“I was under pressure to pick up wher I left off but with the brain having an injury it is impossible to do that. That is the hardest part, my brain wasn’t performing the way I was used to and the same thing for my body,” she said.

“I’ve been blessed in many ways but my biggest challenge is the brain doesn’t recover as quickly as, especially employers, think. Because it is not a physical injury they can see like a broken leg, if it’s a brain, emotions or self-confidence they can’t see that but you feel it.

“For me, every day when I walk into my floor and office it is “oh, here we go” it takes a lot of courage to stand up in a room and speak about things I am struggling to remember. The good thing is it has cleared up a lot of things in terms of what we are lacking, especially in labour law and I could focus on that for a Master’s degree topic when I am ready to commit to it.”

Beulah said the first six months back at work were “terrible” as she was a shadow of her previous self.

“It was very challenging and traumatic because I didn’t know what was happening, I didn’t understand myself because part of your brain is still not processing what’s happened because half of it you don’t know due to the coma. When I did come to I was on life support, so a lot started opening up in terms of what actually happened in that time and that obviously affected me emotionally.”

Beulah’s neurologist and physician recommended she see an expert for a neurocognitive assessment.

“I went to see him in August last year and we did a three hour session with exercises on how the brain responds to questions, lighting, memory and all those things. He provided a report on my capabilities at that stage which were very poor compared to before the incident,” she said.

“He recommended a follow up within six months. The six months after August were very traumatic. I had an epilepsy episode at work in late August as a result of listeriosis which left a scar on the brain and that is causing the connections from the brain to the body to sometimes go crazy.

“Three weeks ago I was in hospital for a week with migraines, my neurologist did another scan and he said it was the scarring that was causing it. A week ago I went to the neuropsychologist for my follow-up assessment and he gave me a very good report. There are a lot of functions that are not at 100 percent yet but I have increased by 80 percent compared to the exercises we did in August.”

From death’s door to marriage
Beulah got married to Envor Rhode this month. Speaking before the big day, she described the occasion as bittersweet.

“It is quite bittersweet because I am thinking this is the most special day ever. But will I have a headache now the whole weekend? If I think about my quality of life, we have expectations, we want to have kids and we want other things and not just a career but what is the quality of that life when you have to lie down if you have a headache, when you have to be careful as your head can’t get hurt again. It’s things that you’ve never considered and you cannot put a value on it,” she said.

“I have good medical aid so got the best care I could get and not everyone has that available. The same with support at work, a lot of people don’t have the support that I had. I had an income for the entire time, businesses close all the time and if you are sick for nine months they are just going to get rid of you but I walked right back into my job.”

While she was in the hospital Beulah’s parents were called by doctors to say farewell to their daughter. However, hopeful she would regain consciousness they kept her on life support.

“I was resuscitated twice in hospital, putting my parents into a tail spin, as Beulah doesn’t get sick but she is in ICU. It is very traumatic, my mum hasn’t got over it. I was at death’s door and now I am getting married. It affects your complete life, your perspective and you either go off on a tangent or you can rise up and I’ve made the decision to rise up. Unfortunately, the listeriosis did not end, it continues every day. My follow-up got cleared, it is out of my body and system but the side effects are still there.”

Emotional journey
Beulah said the third hospital trusted what she said about not feeling well and knowing something was wrong and despite not knowing what the problem was they were determined to find out.

“They did so many tests. My mum was sitting by my side morning and night. My family supported me so much, especially my mum and dad they just believed this is not it for Beulah, she has worked too hard,” she said.

“To myself there were a lot of questions, I was at the top of my game when I got sick so I was confused, why did this happen to me? In hospital and rehab there are a lot of nights lying awake, everyone is sleeping around you, and you are trying to figure out what am I doing here? Look at all these people that can’t walk or talk properly and then I thought oh but Beulah that is who you are right now. In a sense you feel angry, what did I do to have that happen to me and yet it did.”

Initial details about the outbreak were not clear, according to Beulah.

“There was news about it but there was never a name for it, they were saying there is a virus and people must be careful what they are eating but you never heard of someone it happened to, so it didn’t seem like it was here. Even when people heard it happened to me, they couldn’t believe it and didn’t know what it actually was. So we didn’t know enough about it, wher we would be at risk and that it was as deadly as it is, it was the last thing on anybody’s mind,” she said.

“I ate polony and a lot of other meats. They wanted to know exactly what I ate and I said I was a single woman living on my own, I would go to the shop and buy things for the month. So when I come home late at night I would throw something in the microwave. It could be a pasta meal or a sandwich. No I don’t eat it now, absolutely not and I don’t buy any brand of polony.”

Beulah said her perspective on life has changed in many different ways and she is looking forward to married life.

“You realize you don’t have as much time as you think and you are here today so make it good. You can have all the cars, titles, degrees and jobs but if you don’t have your health it doesn’t matter what you earn or own or who or what you know,” she said.

“For me it was accepting you are wher you are now, so what do you want to do for the next 35 years and I don’t want to spend them running around from 5:30 in the morning and leaving work at 7 or 8 o’clock at night and coming home to feed my dogs, talk to them for a few minutes, have a bath and go to sleep.

“We don’t have kids, we are hoping that is going to come. That is one of the things I shifted aside because of my career. It has to wait until the doctors give me the go ahead when my body has fully recovered. We are working on my health to get it to the optimum level and once the doctor says I am ready then we can try.”

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