There was nothing in the world that could have prepared Neveen Radwan, an Egyptian-American computer engineer, for the drama that hit her and her husband and their three children in 2020 when her perfectly healthy and bright 14-year-old daughter, Mariam, was stricken by anorexia.
It was a moment when the world was looking the nightmare of the COVID-19 pandemic right in the eye. Her teenage daughter, who had an otherwise very busy schedule of school and sports activities, was planning to use the lockdown to get the ‘glow-up’ she had hoped would place her squarely with the rest of the girly-girls in her class. However, as Radwan wrote last December in a 53-page self-published book that she is now selling on Amazon, it was “a glow-up gone wrong.”
“There was this one time where Mariam (the daughter) was resting in the arms of Khaled (the husband and father) when she suddenly made a convulsive gasp and I froze for a second thinking that she just passed away. She did not, luckily, but she went through yet another fit of spasms and cramps. I looked at Khaled and he knew that I thought she had passed away because he too thought the same,” Radwan said.
Radwan was prepared to take a fit of spasms, harsh and tormenting as it was to go through, because she had been there over and over again next to Mariam while she suffered painfully trying to recover from the anorexia that she developed during the lockdown.
“When she said she was going to have a glow-up, I thought she would change her style of clothes, get a new haircut or start putting on some make-up. I never really thought that she would get into the severe food deprivation she forced herself into coupled with the excessive exercise that would trigger the anorexia that nearly killed her more than once,” Radwan said.
In her 11-chapter book, Radwan shares exactly what the title promises, her “daughter’s fight for her life against anorexia” that had turned her from the extremely smart, funny and over-achieving teenager into a girl who was scared of putting on weight to the point of death – literally rather than metaphorically. Radwan’s daughter suffered a cardiac arrest twice while under strict medical supervision at a treatment centre in Denver, Colorado, which is a 19-hour drive from their home in San Jose, California.
For six months, Radwan recalled, Mariam remained in the treatment centre while she made weekly visits to reassure her teenage daughter, who had just wanted to be like the other girly-girls but who ended up so consumed by her disorder that she seemed ready to take her own life.
Before Mariam’s severe illness, Radwan herself knew very little about eating disorders, including anorexia and bulimia. She would not have ever thought that they would hit her own pretty and aspiring daughter. “We were always so proud of her. And frankly, sometimes a little intimidated by her. She was so fiercely independent. As a young child, her best friends deemed her ‘The Boss’,” she wrote in her book. Then things started to change, with Noora, the eldest daughter, sharing concerns that Mariam might be developing anorexia. Radwan started to keep an eye on Mariam, but did not notice any signs of alarm because, as she explained in the book, whatever was going wrong – beyond abstaining from honey, sauces and carbs – was happening out of the house. For example, Mariam would go for a 40 kilometre run on an empty stomach. Eventually, she wrote, Mariam was only capable of moving around in a wheel chair because of her very poor heart rate.
As Radwan wrote, “most parents miss these early subtle signs of eating disorders until it is too late. Children and teenagers SHOULD NOT be dieting or overly exercising. ANY signs of this or eating habit changes should immediately be red flags!” Then again, she said, “One always thinks: not my child; but well, it could happen to any of us.”
In her book, Radwan shares what she said are the small details that did not appear alarming at first, in the hope that other parents would be attentive and careful. “When I was sitting at the hotel room waiting for Mariam to pick up and to start to eat her food without being forced to do it, to the point that the medical team would have to tie her hands to force her into eating, I started taking notes of what she has been going through so that she would be so proud of herself when she is back on her feet and so that other parents would be careful before they end up having to take their kids to a treatment centre,” Radwan said.
Going to the treatment centre was not anyone’s first choice because the doctors and the family had hoped that with a bit of attention Mariam could start doing better. That was not easy as it meant that Radwan not only had to abandon her work, but also become the annoying parent who is constantly reminding her daughter that she needs to eat three times a day. Moreover, getting out of hospital/treatment centre was not the happy conclusion to treatment, but the beginning of a longer process, simply because what anorexia does to the body and to the brain.
Relapses happen, sometimes more than once. As Radwan’s book shows, relapses are often stimulated by a negative body image stemming from a desire to meet the beauty standards, especially as promoted on social media.
After having partially recovered following the initial treatment, Mariam partially relapsed. “The day before Halloween, Mariam came down from her room in tears. Her costume did not fit. She had been taking pictures of herself now compared to four months earlier and was now accusing me of making her fat. Her thighs were fat. Her stomach was fat. At first, she said would not go out at all. Ultimately, she went to her Halloween party wearing a tutu over her costume,” Radwan recalled in her book.
“The only food Mariam would VOLUNTARILY eat were a few snacks that she had already pre-calculated the calories of and ate herself every night. She manipulated every weigh-in. Some we caught, some we did not. This was indicative of how extremely smart and desperate she was. EVERY time I caught something in her clothes, she would cry and swear she’d never do it again,” she added in the chapter titled “Relapse.”
Ultimately, Radwan said that she knows that it is not just about a particular dress or negative peer pressure but about a brain disorder. “I did not know it then and I know most people do not know but eating disorders are a mental disorder and it takes several years to get over and it takes a lot more than therapy,” she said. She added that it was not the therapy and not the hospital that had helped Mariam most during her two-year battle against anorexia but rather a trip to Egypt to be next to her grandparents as her grandfather was about to pass away.
In the summer of last year, Radwan decided to go against the doctor’s preferred choice of getting Mariam back to hospital as her health was again declining. “The hospital was such a traumatic experience that I thought really hurt her; I agreed with the doctor that I would bring her to spend the summer in Egypt and that if things started to go wrong, I will rush back to the US and have her immediately admitted into hospital,” she said. Luckily for Mariam and Radwan, things went better than expected that she decided to stay in Egypt, continuing her schooling online, and then again this year.
Radwan has no clear explanation as to why Mariam’s condition improved, but it was; “with lapses but it was happening.” The joint decision of mother and daughter is that they would remain in Egypt, a country that neither was born in, but that both called home.
With the long battle against anorexia, Radwan learned that there is are no clear guidelines and no long-term certainty, at least until things settle for a significant span of time. What Radwan came to learn as Mariam has been trying to get over her anorexia is that some people are just born with the cerebral makeup that makes them prone to anorexia and that once it hits hard there is always a possibility of a relapse, after a short or long while, exactly like those who struggle with alcoholism.
Radwan also learned that when anorexia hits, it does not just affect one person, but the entire family, and in more ways than one. For the best part of the past two years, Radwan had to be away from her husband, who is working in the US, and her children, including Noora, who also has a job back in the US, and Mohamed, Mariam’s twin who is preparing for his last year of school this year. “It is not easy at all,” she said.
This situation and the continued worry for Mariam and the agonising moment of seeing her daughter in pain has had a toll on Radwan’s own energy and emotional stability. She too has been seeking help to be able to cope, especially during the bad episodes of the mother-daughter relationship given that things are not always easy between her and Mariam.
“Sometimes, her mind tells her that I want to make her fat and I am the one who put her in a hospital where she was tied up and forced to eat,” she said. This has certainly brought a lot of tension to a relationship that has otherwise been open and friendly. Again, Radwan said that this is one of the things that she had wanted to share in her book so that parents know that being close to their children does not mean that their children is immune to peer pressure and social media pressure, especially as teenagers.
Mariam used to share with her mother her wish to get the same attention that the all the made-up girls got, but lied about having had lunch to avoid having to eat for the day in order to lose weight and not be fat as she feared she would be.
Radwan is not sure if her daughter would avoided the nightmare if it had not been for the COVID-19 lockdown, which started Mariam worrying about the impact of the suspension of her soccer activities on her fitness. She just knows that it was a combination of things that triggered the ailment to surface; “as the doctors said, it was the perfect storm.”
She knows that all over the world, people who are prone to all types of disorders, including eating disorders, suffered during the lockdown. “I think there is not enough awareness about this issue. This is worldwide but I can say that I particularly sense it here [in Egypt]. People just do not understand how this illness work; they just keep telling me that I am not making my daughter the food she likes, but it does not work this way,” she said.
Ultimately, the book is supposed to contribute to this awareness effort. “This is why Mariam agreed that I should write and publish the book and to be candid about the journey; she knows that this would help spare others from going where she has been, at least partially,” she said.
For her part, Mariam said that she had mixed feelings about the book. On one hand, she explained, she does not mind sharing her experience to help others who are going through a similar rough time or those who could avoid it altogether. However, today, almost one year after the book was put out on Amazon she still has second thoughts about whether or not the book should have had such personal details.
After all, she said that she would rather be the one who shares her own experience and decides how far she goes in opening up about such details like the feeding tubes or the numbers related to her weight or her long running exercise. This, she added, is not just about going a bit too far with sharing but also about the possible negative effect that these numbers could have on other people who might decide they want to beat these numbers.
“Right now, I do not regret the book being published and I think the positive overrides the negative,” she said.
Eventually, Mariam might come round to adding on her own narrative to that of her mother’s – maybe in a sequel to the book or maybe even in the Arabic version for an Egyptian audience. Mariam is actually hoping that at some point she will be able to do outreach work to help others, perhaps through life-coaching on social media or other venue. However, she believes she needs to be fully recovered to avoid relapsing as a result of being in direct touch with the agony of others that could trigger the illness.
Two years down the road from the start of her path with therapy and treatment, Mariam is confident confessing that she is “still struggling a lot.”
The years of fighting anorexia has actually inspired Mariam to think of her next move beyond high school. “I want to do something in the psychiatry medical field,” she said. What she wants to do with psychiatry is also highly influenced by her own unease of being put under what she thinks was possibly excessive medication that often made her numb to the extent that she felt that her body and her soul were at times out of touch with one another.
Certainly, Mariam’s own experience with medication and treatment centres detailed in the book show that what worked best for her was a mix of less medicine and more sunshine. “I think making new friends, socialising and avoiding being stuck in my mind is very useful,” she said.
Radwan agreed that having different groups of friends and having a pleasant and easy time away from the pressure that was augmented during the time of the pandemic had helped her and her daughter to move on.
Both Radawan and Mariam agreed that the pandemic has been a firm factor in the rough experience their family has endured and that this must have been the case with many others who have psychological vulnerabilities. Sharing, they said, helps the healing process for everyone who had a rough time during the years of COVID-19. They also agreed that when the final bill of the pandemic is calculated, it has to factor in the enormous psychological impact it had on so many people all over the world in many different ways – anorexia being just one.