I'm Not Sick, Just A Bit Unwell (03/2021)

 

Title : I’m Not Sick, Just A Bit Unwell : Life with Neurofibromatosis
Author : Yvonne Foong
Publisher : Yvonne Foong
No. of Pages : 134


REVIEW 03/2021.

One day, I came across a message on Whatsapp about this book. They were giving out this book for free. Buyers need to only pay for the postage. Not only this one, but there is also a sequel to this book that they are giving out for free, too. That got me interested.

Why giving them for free?

Apparently, the author, Yvonne Foong, has passed on in 2019 at the age of 33. Since there are still a lot of stocks, her friend decided to give them away. However, being a writer and aspiring author myself, I bought them at the selling price plus the postage.

Just by looking at the title we would immediately know that Yvonne was full of positivity despite her health condition. Neurofibromatosis (NF), the disease that she was suffering from, is a genetic disorder that affects the nervous system, causing tumors to grow in the body “anytime, anywhere,” as she put it. There are three types of NF – NF1, NF2 and schwannomatosis. What Yvonne had was NF2, a rare form of NF that caused tumors to grow in her brain and spine. The tumors include Acoustic Neuroma which grow on hearing nerves and eventually affect the patient’s hearing. Information on the disease is available in page 115 onwards. You can also get more information on the internet.

Yvonne started off the book by immediately writing about her encounter with Dr. Eow Gaik Bee, a neurologist, who showed her the scans of her spine. It was a 3-page introduction that sets off the pace for us to read on.

In the next chapters, she wrote a little bit about her background. Yvonne also wrote about her Aunt Ivy whom she described as her guardian angel, who died when she was 15. In these earlier chapters, she wrote about her frustration that due to her family’s busyness, her deteriorating condition was neglected. Her parents, in particular.

The first sign of her illness occurred when she was 13, when she lost the hearing on her right ear. Unfortunately, it was dismissed by her mother that she didn’t clean her ears. The next symptom was the feeling of dizziness and nauseous, including blue black marks all over her body, that had caused curiosity among her teachers and friends. She was also having problems with balancing herself, until she had to stop going for ballet and figure-skating classes.

She was finally taken to the hospital for a thorough check-up when she was unable to walk, at the age of 16. That was when she had her first spinal surgery. After the surgery she had to stay in the hospital for physiotherapy and rehabilitation. She ended up being in the hospital for one month. She told of her unfortunate encounters with uncompassionate doctors and nurses, which I could relate to, when my late brother was hospitalised. Yvonne also wrote about her regrets for taking things for granted, such as being able to move her legs and walk; and how she was dependent on her mother again, like when she was little.

She had her second surgery in 2003 to remove the Acoustic Neuroma. Despite her condition, she managed to sit for her SPM at the end of the year. However, soon they found that the tumour was not completely removed and it has affected her hearing.

She then made her own research about the illness. In the NF support group, one of the members suggested her to email Dr. Friedman of the House Clinic. Fortunately, they were able to provide her with financial assistance for the surgery while her aunt sponsored the flight ticket. At 18, she went to LA for the surgery. That was the first time she met with Dr. Friedman, who later played a significant role in her life and the life of other NF2 sufferers.

During her first visit to LA in 2004, Dr. Friedman managed to remove the Acoustic Neuroma without damaging her hearing nerves. However, she still needed to have an Auditory Brainstem Implant (ABI) device which would cost her USD58,000 (about RM300,000). That’s when her friend suggested she wrote a book about her ordeal, to collect the funds.

However, out of 40 proposals that she sent out to publishers, only 2 responded and they were a Chinese literary agent in Malaysia and another one in Europe. Then she got to know John Ling who taught her about self-publishing. Other than publishing her book, Yvonne also sold T-shirts for her fund-raising project. She was also invited to speak at various events.

What amazes me was that during the whole ordeal, she still managed to get into College. She was also awarded the Most Outstanding Youth of the Year in 2005. From that winning, she was awarded a scholarship by Life College to continue her studies in Mass Communications.

The main points that I could gather from this book, that I think would also benefit us all:

1. Illness will not only disable us physically, but mentally and financially too.
2. We need to do our own research on the best medical treatment. We cannot rely on the hospitals to provide us with alternatives.
3. We need to also be able to find our own funds if we chose to have our treatment in private hospitals or abroad.
4. It helps to join a support group where we can get more information about who and where to go to, for alternative treatments.

After reading this book, I could not help but wonder how had she managed to go through all the challenges. Not only did she have to face the illness itself, but she also had to go under the knife for numerous numbers of times. She also had to find her own funding which amounted to hundreds of thousands of Ringgit and travelled alone to the US. On top of that, she also had to take care of her ailing father.

What I could say is, it takes true courage and internal strength to go through all these ordeals.

I give this book a FIVE 🌟🌟🌟🌟🌟stars for the contents and the impact that it has given me.