A TMAU Sufferer’s Story Part 2

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A Lull in the Storm continued…

4 logo_1685361_webAt weekends, I usually stayed home to

avoid people. But Mum sometimes 

insisted that I take some fresh air and

stretch my legs.

On one occasion she had sent me to do some shopping

at the local Co-Op. I thought to myself, At least I can

walk there and I’ll be as fast as I can. The sliding doors

opened and I got in quickly. A few seconds later I heard

a commotion by the entrance. I turned to look, and to

my horror all the cashiers and customers were fanning

their noses. I saw them frowning in utter disgust but

worse still, the security guard and another employee

were struggling to try and keep the sliding doors open.

They eventually managed to fold a heavy looking rubber

mat and put it between the two doors! When I brought

my shopping to the checkout, the cashier barely

acknowledged my presence and instead stared at me in

contempt. Needless to say, the security guard was

nowhere to be seen but he had found the key to leave

the doors open…

On another occasion, I had gone to the bank with my

mother. She had stepped in and as I followed her I

heard customers moan loudly:

“Yuk!’’

“What’s that smell?”

The people queuing and the cashiers were all

grimacing in disgust. A lady who couldn’t stand the smell

had left in a hurry. A minute later, one of the

employees brought back an air freshener and sprayed it

upwards. A cashier had asked him to also spray it

towards her booth… That time, my mum had coughed

because she had caught a whiff of the overpowering

fecal-like odour. 

Later, when I had asked her if she finally believed 

that I stank, she replied, “Don’t be so silly, nobody can

smell like that unless they’ve had a major accident in

their pants, and you haven’t, have you?” 

The following evening, I cried so much on my bed. It

is not in my head, I thought. Then my mind ranted:

People’s reactions around me prove that my body emits

a foul odour! Yet the medical profession cannot find

anything wrong with me! How I wish I wasn’t born…I

hurt so much I don’t want to be part of this world

anymore! What is the point of me? I don’t live, I simply

exist. I cry myself to sleep every night. I struggle to

get up in the morning. I breathe with difficulty when

I’m in class because I’m scared if I breathe out too

much people will notice my smell even more. I’m not

rational any more: I can’t watch a romantic scene

without thinking, I wonder if the woman or the man

have bad breath like me? I seem to scare people: often

when I talk to someone they ‘jump backwards’ as if I

was going to hit them! People cough because of me…

Suddenly a little woman with curly pink hair, porcelain

skin and green eyes was stroking my hair. She asked me

what wish I’d like her to grant me. She had startled me,

but I managed to utter, “Please stop the ‘BOG gang’

from bullying me at school, but above all…”

As I was about to plead with her to make me smell

good forever, she flew away and shouted, “Sorry, little

one, I can only grant one wish!”

I was distraught for a while but managed to calm

myself down by reasoning, maybe if the ‘BOG gang’ stop

pestering me it will be because I don’t smell bad any

more. 

Once again, I dragged myself out of the car to get to

school. As I entered the classroom for my English

lesson, I noticed that the ‘BOG gang’ didn’t snort or

sneer. I sat down next to Emma.

I heard Olivia tell Gabrielle, “You don’t look yourself

today, are you all right?” 

Gabrielle mumbled that she got up really late and had 

to do everything really fast.

Then at lunchtime, when I saw her in the canteen I

thought she looked ill. Her hair was a little greasy and

she had a few spots on her face.

After lunch, we had History. The teacher played a

DVD about WWII. He had requested complete silence

and concentration, as we would have a test on the

subject. Generally speaking, we were sensible students

who had aspirations and determination to succeed in

life.

However, five minutes into the movie, an

indescribable ‘fart’ was heard. The sound and smell

seemed to linger for ages! The reaction of everyone in

the room–including myself–was priceless: we were

startled at first, then we tried to stifle a giggle–out of

respect for our teacher–but mostly for fear of inhaling

more of the dreadful stench! Windows were opening

fast as if they were doing a Mexican wave and perfume

was being sprayed in every corner of the classroom. The

teacher stopped the film and ran out of the classroom,

claiming he had to go and get the answer sheets….

I was petrified because I thought everyone was going

to point the finger at me. But I heard someone complain,

“Olivia, what’s up with you? What have you eaten that

doesn’t agree with you?”

I was surprised to see her just shrug her shoulders.

She wasn’t as mortified as I was when I smelled bad.

Ten minutes later, order and breathable air were

restored in the classroom. But as the teacher pressed

the start button again, I thought, Uh-oh, another blast!

This one was louder, smellier and filled the room once

again. The teacher stopped the DVD and this time he

lectured everyone about the importance of being

respectful. He then told Olivia that if she needed to

leave the room she may do so without asking permission.

Five minutes later, Olivia stood up, left the room and

came back in after a few seconds. She did the same

thing twice. Belinda ordered her to fart in the class

first then leave with the smell and not the other way

round! Gabrielle protested that she had tried that but

it was “no good!” So they both agreed Olivia should stay

outside…or maybe go to the toilet.

The next day there was still talk of a ‘stinking bomb’

that had gone off in the History lesson. Olivia still

emitted some farts but only when she sat down or bent

over to pick something up in her bag. She apologized to

her friends for “that freaky episode yesterday,” and

told them, “I don’t blame you for spending some time

away from me yesterday because I wanted to spend

some time away from myself too: I’ve never had a

problem with the smell of my own farts, but yesterday

even I couldn’t bear it!”

Gabriella told Olivia, “My dad thought that it’s no

laughing matter because you could have a serious

problem like Fartilitis.”

I looked it up on the Internet, but I must have

misspelled it because I couldn’t find it.

Olivia became red with embarrassment and shouted

at Gabriella, “Thanks for telling your family, I won’t be

able to face them ever again!”

After lunch we went outside. The three members of

the ‘BOG gang’ were sitting on their reserved bench

while Emma, Matt and I sat on the grass, chatting away.

In the short distance I saw Belinda lifting her long arms

trying to reach her back. Then she jerked, touched her

thighs, belly and every part of her body.

We couldn’t quite work out what she was doing. We

thought she might be practicing some type of new

dance, a mixture of jive, Charleston or maybe just the

‘Head-shoulder-knees-and-toes routine.’ Then we

couldn’t see her anymore as a small crowd had gathered

around her and blocked our view.

Emma, Matt and I decided to go and check out what

was going on. As we approached the bench, Belinda was

still wriggling and her face was really flushed. She didn’t

look happy. Her two pals were patting on her back, arms

and legs. At one point Belinda reached into her beauty

bag, took out a comb and scratched herself with it.

Everybody was simply baffled…

When the bell rang we had to go to class and

reluctantly leave this weird but hypnotizing spectacle.

Olivia and Gabrielle returned to class fifteen minutes

late and without Belinda. They explained to the

Citizenship teacher that she had to go and see the

nurse. I felt bad for Belinda and hoped that nothing

serious had happened to her.

My moment of sadness was rudely interrupted when I

heard Olivia fart as she sat down. This one sounded like

a huge air balloon whose air is let out slowly. And it

smelled like a mixture of rotten cabbage, eggs and

prawns…I felt bad for Olivia too.

As for Gabrielle, she looked worse than yesterday.

Her hair was really greasy, her shirt was wrinkled and

her nails looked dirty. I felt sad for her because I

thought something serious might be going on at home.

She was always so immaculate.

On the way to the bus, I heard a student speculate

that Belinda’s skin was covered with lice and that’s why

her entire body was itchy.

***

Belinda returned to school two days later. Thankfully,

all three of them had stopped having those weird and

embarrassing ‘episodes’ and seemed perfectly fine. But

strangely they had stopped bullying me. They even said

hello to me! Wow, what a turnaround! I have to stop

giving them that ‘BOG’ nickname now, I thought.

Fairy had decided to cast the ‘itch curse’ upon

Belinda because she was tall, and it would look funnier to

see her long limbs wriggling all over the place. She

thought the fart curse’ would suit Olivia better as she

had a larger derriere. And the ‘dirty curse’ was perfect

for Gabrielle as her appearance was always immaculate.

Fairy came back and took the ‘BOG gang’ aside…

“Belinda, how would you fancy another round of jerking

or twerking-whatever name you young people use? I can

make it happen in a jiffy: I’ve got some magical itching

powder!”

Belinda shook her head vigoriously.

“What about you Gabrielle? Wanna try looking

dirtier? I can make little holes on your school uniform

or stick a few warts on your face if you like.”

Gabrielle bent her head and could be barely heard

declining the offer.

“Last but not least, Olivia: I can make you burp as

well as fart if you like. Same resonance, same bouquet-

that means sound and smell, by the way.”

Olivia curled up her lips and started to cry.

“All right, girls,” Fairy said. “I’m feeling generous

today: I will not put another curse on you, but there is

something you must do.”

The traumatized girls fell to their knees and pleaded

with Fairy not to cast another spell on them. So Fairy

made them promise that they would not be mean to

anyone and instead will spend the rest of their lives

being nice and helping others who are less fortunate

than them. 

I hoped this was not another dream. I thought,Well,

I’ll find out if that blasted clock rings…

I switched on my laptop and Googled ‘disgusting smell

coming out of my body,’ ‘bad body odour,’ ‘fecal body

odour’…Bingo! There was a site dedicated to a metabolic

disorder called Trimethylaminuria (TMAU in short).

TMAU is a rare genetic disorder that causes a strong

body odour, which can range from rotting fish to feces

or even sewage. The odour is created when the body is

unable to break down trimethylamine, which is a smelly

chemical produced in the gut particularly when protein

and choline-rich foods are digested.

I cried with relief: Finally I had found a name for my

dreadful condition. But that was just the start of a long

battle. I went back to see my GP armed with all the info

I had gathered and asked for a urine test. A few

months later my test for TMAU came back positive. I

was referred to a Metabolic Disorder Consultant, who

specialised in TMAU. He explained to me what my

disorder was and gave me a diet plan to follow as well as

a prescription for antibiotics. He warned me that it

wasn’t a cure, but that I should see some improvements.

I felt a huge sense of relief and was feeling very

optimistic…

Once I knew that I suffered from TMAU and could

prove that I didn’t smell bad because I was dirty, I

thought it was time to tell my two best friends. I finally

took the courage to invite Emma and Matt. They were

surprised as well as delighted because they’d never set

foot in my house before. I had photocopied the

information sheets given to me at the Metabolic

Disorder Clinic. We sat down at the kitchen table.

Before giving them some refreshment, I handed them

the sheets–without uttering a word. I could see Emma

wiping tears with the back of her hand. Matt looked like

he was fighting tears: he coughed a lot.

My heart melted. Still, words could not come out of

my mouth. I was too embarrassed. After what felt like

an eternity, they put the papers down and looked at me.

I finally managed to tell them, “Listen, we don’t have to

talk about this today. You might need some time to

digest this. It took me…” I hadn’t finished my sentence

when suddenly Emma and Matt jumped off their seats

and gave me a huge hug. It was so comforting!

Emma gave me lots of kisses on the cheek.

And Matt turned my face towards his and said, “I’m

sorry, but I just can’t find any fault with you! You are so

cute and funny. I’m so glad you are my friend! Isabelle,

if you need me to do anything, please just ask me. And

from now on we talk to each other about everything

that troubles us, deal?”

Tears rolled down my face. I was so relieved that

they wanted to remain my friends.

But a little part of me was sad: it was absolutely clear

that Matt did not fancy me. I had to try hard not to see

him as the boy who gives the warmest hugs and

sweetest kisses, but it’s hard to control my dreams!

Well, I thought, I’ll try to control reality: chase away

those butterflies in my tummy every time I see him…

Things got back to normal after that emotional day.

There were no more awkward moments between the

three of us. In fact, at break or lunch times we spoke

about my TMAU disorder. Matt and Emma would hand

me sheets they had printed off the Internet, which

gave advice on how to deal with the disorder. Of course,

I already knew most of it because I spent all my spare

time researching TMAU on the net, but I loved the fact

that my friends cared about me a lot and wanted to get

involved with my treatment.

To this day, however, Emma and Matt refused to

admit that they had ever smelled a bad odour on me. “I

would never have hugged or kissed you if you stank!’,

they insisted. I’m sure they were lying, but I believe

they were scared of hurting my feelings. They really

care for me, so I’m not mad at them for hiding the

truth…

***

About a week later, on a fine Saturday afternoon, the

doorbell rang. I was in my bedroom, logged on to MEBO-

an incredible website that provides invaluable

information to TMAU sufferers.

“Isabelle, someone’s here for you,” Dad called out.

I was in my tracksuit, very clean as usual, but my hair

was barely combed and I was wearing no makeup. I

thought it would be Emma. She must have thought it was

now OK to pay me a surprise visit since I invited her last

week. I was smiling and humming as I started to go down

the stairs.

I suddenly fell flat on my bottom as I caught sight of

Matt. The surprise was too much to handle. I looked at

him sheepishly but tried to act as though I had meant

to sit down. Just play it cool, I ordered myself, “and

let’s pray that my little scream, startled facial

expression and red face that accompanied my fall were

not heard and seen by Matt!

“All right, Matt?” I managed to ask.

He looked bemused but replied that he was great and

on the off chance wanted to know if I fancied going to

the roller-skate park.

“Oh, yeah, I fancy you…I mean, I fancy your asking

me to go skating,” I stuttered.

“Are YOU all right?” Matt asked.

I managed to lie that I was out of breath because

I’d been doing some vigorous aerobics just before

coming down to see him.

He stared at my feet and simply said, “You should

wear trainers instead of flip-flops, you know.”

We arrived at the park and started skating. I found

myself breathing heavily. It felt like having a panic

attack. (I’d had a few in the past when I felt

claustrophobic.) How can this be happening, we’re

outside! I thought. I quickly realized that it wasn’t fear:

Matt had helped me with my balance by holding my

hands. Needless to say, the butterflies were having a

party in my tummy! I tried to shoo them away, to no

avail.

My breathing got even harder when I fell in his arms!

That friendship thing isn’t working for me! I thought.

After about twenty minutes, Matt suggested we sit

down on a bench. I was relieved, as my breathing was so

heavy. Matt was puzzled and stated that our session

hadn’t been that strenuous. I wasn’t tired, I was

smitten…

Matt said that he’d had a long chat with Emma after

their visit at my house. Apparently Emma had told him

about the torment and humiliation I had suffered

because of the BOG gang’s bullying. He apologized for

not being aware of it and said he wished I had told him.

Then he looked me straight in the eyes and casually

said, “Sooo, I hear that you’ve had the hots for me for

ages.”

Please, Ground, swallow me up right now! Emma, you’re

so dead! I repeated to myself several times until Matt

continued:

“Never in my wildest dreams would I think that a girl

like you would fancy a guy like me. I’ve fancied you for

ages but always thought you were out of my league. And

you always acted like one of my pals, you know, talking

about cars and football.’’

Somebody pinch me! I screamed inside. Please don’t

let this be another dream! Stupid clock, please don’t

ring! So many happy thoughts raced through my mind

but at the same time I was frozen with embarrassment.

I didn’t know what to do with myself! Suddenly, I felt

his warm and soft lips on my lips…

Matt and I became a popular couple at school.

Nobody ever dared bully me again.

In any case, I worked so hard at controlling my body

odour, and although there was no cure for my TMAU

disorder, I had noticed a lot of improvement. I followed

a new diet that is quite restrictive: it was a little hard

giving up prawns or tuna, but the toughest thing of all

was saying goodbye to my beloved chocolate! But I

accepted the fact that I needed to make a lot of

sacrifices in order to have a much happier life.

Anyway, who do you think I’d chose between

chocolate and Matt?

Antoinette Bibelow (Binette) 

 

5 thoughts on “A TMAU Sufferer’s Story Part 2”

  1. WOW! That is so TOTALLY my story, as far as the, you know by the expressions on peoples faces that they smell something really bad but you’re not sure if it’s you or really just how bad the smell really is ( we can’t smell it!)because when you ask some body you think will tell you the truth they don’t because they like you and they don’t want to hurt your feelings, but then you get those un-empathetic and cruel people who don’t care how they make you feel or care to understand that it just may be a medical condition. Sorry, lol. I’ve had alot of pent up emotion. Thank for letting me rant.
    You really know how to keep a person on the edge of their seat with your writing skills! I read your story with such intrigue and wonderment! I’m still saying, “WOW!!!”

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