DISABILITY MINUS DIS: LIFE INSIDE
A BUBBLE
By Season BubbleGirl
[Above] Untitled 1 (Photo by photographer unknown, year unknown)
I'm BubbleGirl and I have Multiple Chemical Sensitivity. I'm twenty five and my life exists only in my home because when I was sixteen years old, I was involved in a stupid stunt copied from kids at school. My T-cells, that assist in the defense of the immune system, were damaged and my body became unable to defend itself from thousands of chemicals. Now being exposed to these chemicals resulted in a deadly allergic reaction, known as anaphylactic shock.
THE ACCIDENT
One weekend my neighbour Joe, Patrick and I played around, wrestling and fighting. Joe tried to spray Patrick with a deodorant can. I'd grabbed it to spray Joe. Joe and I struggled while Patrick cheered us on. I lost my balance and fell to the floor. Joe snatched the can and sprayed it at my face. I tried to get up but couldn't. Joe continued to expel the can's contents, and it seemed I had no choice but to swallow it. The pressure in my chest and the overwhelming fog stopped me from announcing our game was over. My mind felt hazy. The two boys were still in the midst of the fun.
After I laid down, I fell unconscious. Pat realised this when he tried to wake me for something on the television.
No response.
When he did awaken me, my voice was barely audible. Horror struck in the first few moments I was awake.
"Get help!" I told him in a strained whisper. Then I blacked out.
I remember Mum begging me to speak, but my voice had completely gone; my words were mimed. I also could not rise or stay awake.
I awoke in the car. The coughs were now high-pitched from my tightened throat, and I was unable to breathe.
"We're nearly there," my father announced, noticing my head up for a brief moment.
|
The next time I awoke, someone was carrying me into the hospital emergency department. Only brief clips return to me of what occurred in my cubicle between black-outs. Doctors rushed around. Pills, liquids, and masks were being administered. A doctor asked to see the tin of deodorant to assess what had been inhaled.
"The can says this product contains Butane," he said. "I think that's what saved the product from hardening in her lungs. If it had, we would have had to remove it by surgery. Your daughter was lucky it wasn't another brand."
Medications were repeated until positive results. My ability to breathe slowly increased along with my consciousness. I had to write everything on paper because I couldn't speak without coughing.
"How long have we been here?" I wrote.
"Eight hours," my mum said. She had not left my side since finding me choking in my bedroom. |
[Above] Life in a Bubble Book Cover (Photo by BubbleGirl's mother, 2005)
The doctor returned. "It was a once-off occurrence. Do you feel well enough to go home?"
I shook my head and wrote, "I'm scared it'll happen overnight. I don't want to die."
After such an ordeal, nobody cared to argue.
Mum agreed, then left to yell at the two boys involved in the fight, who waited in the car. Their mucking around ended. Joe burst into tears, while Pat remained unaffected. Emptied of ferocity, she returned to me, helping to organise my overnight stay.
When I was settled in a room, Mum, Dad, and Patrick said their goodbyes. Mum and I mouthed, "I love you," as we did every night before I got into bed.
A lovely nurse stayed with me and took her time asking questions to fill out my forms, waiting while I forced my voice. She was a wonderful woman who called me Poppet and made me feel cared for.
I was given pills and reassurance every few hours. My vitals were checked. My throat felt as if it were encased in barbed wire. I drank the entire two litre jug of water overnight in small sips.
SICK TO ISOLATED
Three more attacks over people wearing fragrances sealed my fate: I was to remain home. If someone had suggested it earlier, I would have given them several impolite words.
|
Now I knew the beating on my immune system couldn't continue. With disappointment and defeat, I agreed to leave school and go into fulll isolation until a specialist would cure me.
In sorrow I watched Mum's conifers sway in the early spring air. Their smell I remembered, from when I would walk past them to our brick pillar mailbox.
Never would I rollerskate on our quiet street, past our generic cream brick home Mum had rendered to continue her Mediterranean theme. I was to remain between biege walls and wallow.
Then the specialists told me there was no cure. |
[Above] BubbleGirl bedroom (Photo by Season BubbleGirl, 2004)
"You have a medication for me, right?"
"No. There is nothing stronger than you've been given."
I sat up annoyed. "So you expect me to control them with these stupid exercises? My attacks were heck. It's going to take more than exercises!"
"You can try them. Now lay."
I pushed his hands away. "If you aren't going to help, you can tick off and let me die in peace!"
Tears of anger and disappointment rushed down my cheeks. Being polite was no longer my aim but I tried to hide my red face.
"I'm sorry, doctor," my mother said. "She's been missing school and hates being home. She's been expecting to be cured today for the last four months."
[Above] Untitled 2 (Photo by photographer unknown, year unknown)
SOLITUDE
I cried. I screamed and dented a fridge. My life was over. How could I get a job? A husband? Men didn't want to marry a girl without a job, car, or house. They weren't interested in a girl who couldn't go out and 'party', or who would remain child-free. Asking a man to go chemical free was impossible - why would they bother with me when millions of other girls had 'collateral' to get attention.
Just as I thought I would break from hurt, regret, and frustration, a sack of will burst within me. Another gallon of courage rose like a phoenix bird from some inner secret place. I am now a proud spinster. A partner seems unattainable because of the extra challenge: contraception. What can you do when you're allergic to them all?!
The same as IUDs. These contain fibres to promote tissue growth, to which I could react. After a month they are impossible to remove as the fallopian tube tissue grows over the coils. To remove it would be dangerous.
CHILDREN
My imagination never included children of my own. How fortunate! I couldn't have any now. A child would cause danger to my health and discomfort.
It wouldn't be a comfortable life for me as a mother. I couldn't do many necessary tasks like run errands, shop, or clean with chemicals to get out stains.
My child wouldn't have a happy life. She would have to avoid swimming pools, spas, science classes, and friends' houses.
In the genetic raffle, my child could be susceptible to chemicals, too. I don't think it's my decision to make for an unborn child. It's the same reason I won't adopt. I don't feel any human being should be made to live this life with me unless by choice.
[Above] Untitled 3 (Photo by photographer unknown, year unknown)
UNCONDITIONAL LOVE
Pets were to give me the love I required. My puppy, BrandLee, and cat, Connie, were enough to settle my loneliness.
Dad showered first, and then Mum showered the grey tabby. Halfway through the shower, Cognac pounced out of her grip and clung onto the brick wall. Mum put the kitten behind the back door while showering herself. We think by being showered, Cognac found her love for water. I often find her trying to get into my bathroom basin or pawing in spills.
"My heart melted when my father handed me a scared, wet feline wrapped in a towel. I was now a mother. I rubbed my new baby in front of the radiator to stop her shivering. This bonded us. Little Connie slept in my arms.
Then Cognac reached adulthood, and her natural independence appeared. She no longer liked cuddles. Her days were spent on top of the bookshelf out of my reach, as she wished only to watch activity, not join in on it. This didn't change as Cognac grew older. She wanted to care for herself. If she could have used a can opener, I don't think she'd have relied on me for that! If I tried to pet Connie, she'd latch on to my arm and attack. The lesson not to touch her was learned quickly.
Once again I felt cheated and craved for companionship.
It was hard finding puppies under twelve weeks who have not been treated with chemicals. The new dog had to be young enough to learn
to be Mutt and Connie's friend. I stumbled on an ad for Lhasa Apso puppies, who had not been treated for fleas. Not knowing what they were, I investigated through the internet. They are loyal, friendly dogs who are specifically known as inside dogs.
The people who were selling the puppies were willing to drive from the other side of Adelaide to deliver them. The man was particularly interested in doing this so I could choose my puppy out of the litter. Little feet ran on the driveway while I watched through the window.
The first week BrandLee was very sick and unable to eat. This soon changed with my constant cuddling, hand feeding, and caring.
I write late into the morning, BrandLee asleep by my side, tucked in and snoring. We share lunch together at noon. The evenings bring dinner and cuddles in front of the television. Little Snooks is such an inquisitive dog, who follows me as I do my daily jobs.
POSITIVITY
No matter what challenge we had to meet, Mum led the journey to solution. I look back in amazement at her strength, then realise with more surprise that I now own it also. In times of quiet I remember the times I was ready to give up, when Mum's cheerful voice brought answers, like the shower idea.
|
When my brother visited a friend whose father was a miner, my most serious attack hit.
My mother tucked me into her bed to listen for any trouble I had breathing while asleep. Every few hours the attack would try to repeat, so she gave me more medication. Each time the symptoms sprang back, I wondered if this was my end.
I spent three weeks in bed, unable to rise. My immune system was so defeated that just going a few yards to the bathroom brought on another tremor of my previous bodily earthquake. |
[Above] BubbleGirl's Computer Desk (Photo by Season BubbleGirl, 2006)
Yet I had to fight. I could eat ground bread or tinned mushrooms. Larger foods slid down my swollen oesophagus like bowling balls and got caught.
When I felt better, my family sat around the bed for a conference.
|
"So what are we going to do?" my father asked.
My brother crossed him arms. "How about I just leave home?"
Mum frowned. "No. It hasn't come to that. We have to work out a new procedure."
"I already take my clothes off at the door."
"What about you wash under the hose before you come in?" my father suggested.
"Yeah and freeze my bits off!"
Mum's eyes brightened. "What about an outside shower?"
"I'm not showing my bits to the neighbours either," my brother announced.
"Not like that," Dad told him. "I'll build a proper wooden surround. It will be private."
"Mum, what about my clothes?" my brother asked.
"I'll leave a bucket of water and suds out. You can put them in there."
"Then what?" |
[Above] BubbleGirl Solemn (Photo by BubbleGirl's mother, 2005)
"I'll . . . get you a wardrobe . . . for outside where you can keep your work clothes. After they're washed, they can be put in there. I think we have to separate our public items from our inside stuff."
My brother rolled his eyes. "I hope this works because people are going to think we're bizarre."
"What's more important? Them or us?" my mother asked, staring him in his eyes.
"Yeah, yeah."
CAREER
Illness lead me to clarity. Isolation gave time to evaluate the important things, choosing with my heart. (My success-oriented influences were the back-seat drivers for once.) Without a typical life of schedules and social expectations, I could concentrate on my childhood dreams of being a well-known author. Online schooling and mentoring helped encourage me to write and publish my first book, A Doggy Diary, to honour my biggest fans, Connie and BrandLee.
Disability had lost it's first three letters in some instances. I prayed to God to bring me success and allow me to reach people. I studied an online writing course and developed my stories and novels on a daily basis.
Writing for me is a process of sharing. As the words go on the page, I feel relief, and hope it makes a difference to someone's life. When I got a puppy, I found new joys and challenges. A Doggy Diary was written to show the new responsibilities and experiences I had.
|
The addition of BrandLee's thoughts to the book, using her Doggy-Speak, evolved from my theories on what she was thinking when her big brown eyes investigated her new envrionment. Her findings were to be different being in a home with MCS.
Absolute Individual: Life in a Bubble was somewhat more difficult to write. It went through four rewrites because the voice wasn't right. In my mind I pictured how other autobiographies had been written, trying to gather the same feeling. Once I realised the book had to reflect me, during rewriting, the final rewrite began. I couldn't write like anyone else but me.
Both books are distributed throughout online stores. Bookstores can order them for customers but as yet do not stock them. Print and e-book editions are available from Amazon and Fictionwise, or shaminosrealm.com.au. Readers of my books are giving it five stars so I feel I have done my job. My private editor, who I asked to be brutal, said I am a candid writer with a warming voice. |
[Above] A Doggy Diary Book Cover (Photo by Season BubbleGirl, 2003)
Although housebound, I have reached people in the UK, US and Australia. Magazines such as Tell, WarCry and Woman UK have helped me get my message out. Phone interviews have been used, with the photos the Australian Sunday papers took in March 2005, when the reporters took the photographs through the window. More recent photos are taken by my mother or myself with my digital camera. This camera works with my Pocket PC and has fewer chemicals than modern cameras may contain.
My biggest support comes from online. If I was able to go out and run seminars, my audience would be a lot larger, but I hope for that to happen anyway. One day a large publisher may take my book on and help me show the world what I'm about. Until then, I continue to work hard, allowing my message to slowly filter out.
At the moment I'm writing another three books, all to be finished at the end of the year. Another non-fiction, a science fiction and a second Doggy Diary. Between writing marathons on these books, I write articles for my webpage and print publications. Sharpening my skills is my primary interest. Even at the professional level I write, I want to continue to learn and experiment with the English language. Doggy Diary and Absolute Individual were both perceptive, candid pieces, but I wish to try new genres. Horror, romance, science fiction, educational fiction, and word puzzles are among them. For me each book is an achievement, and, like an athlete, I want to continue to achieve.
I can be found on my Pocket PC, watching TV, crocheting, playing music, or reading my Bible. Close your eyes and imagine me in my rainbow-striped bedroom, tucked in bed while typing another book or article, little BrandLee asleep beside me.
[Above] BubbleGirl Banner (Photos by BubbleGirl's mother, Art by Season BubbleGirl 2005/2006)
PUBLIC PERCEPTION
I want the world to think of me and be moved enough to go beyond their own limitations, be they disabled or well. I want to open my own charity to help those who are disabled by lack of money. More than anything, I want to become self-sufficient through my writing and my webpage pursuits.
People have compared me to Thredbo survivor, Stuart Diver, which to me sounded absurd. I'm just a chick who was thrown into an ocean of turmoil who instantly learned to swim. Even after nearly nine years, I don't consider myself brave. I'm just stubborn not to fail.
Anything can be borne with a strong will. Whether your support comes from God, friends, or family, reach inside yourself, and you'll find the strength you need. Cry if you need to. Punch your pillow. Do what you need to bear the challenges in life.
CHEMICALS
Despite all this, it may be unrealistic to ban the use of all chemicals. However we can certainly cut down if we feel they are contributing to illness. During morning routines, deodorants and fragrances can be used at a minimum, to cover bodily odour without leaving a heavy mist everywhere you go and salt water can be used if toothpaste is a concern. Vinegar can be used to clean the kitchen, bathroom and clothes, and steam cleaners can be used on carpets instead of strong cleaners. Reverse cycle air-conditioning can be chosen over ducted heating and cooling which requires anti-leigonnaire's chemicals. Natural treatments like vegemite and water can be used to fertilise your plants, as well as companion planting.
One of the biggest lessons I've learned is that life is full of risks, and sometimes these can't be avoided. If you are born with a genetic weakness, as I was, sooner or later something will start the inner time bomb.
In our world, however, at least some chemicals seem to have become a necessary part of life, for example, in surgical and veterinary proceedures. In some third world countries like Rwanda, for example; untreated water could give people dysentery and kill them. Other chemicals used daily have aided us in avoiding medical treatment, such as vitamin tablets, medicinal creams and cleaning regimes, protecting us from daily dangers of germs or immune weakness.
THE CURE
A cure is some way off. T-Cell and stem research will be the key. However, I cannot wait for that. Nor can I be a test case in medical trials due to the severity of my condition. One day I may re-enter the outside world, but for now I'm settled.
If by some gene-therapy miracle I were cured, I'd be ecstatic. I'd try radio announcing and advertising, in between writing more books. Whenever someone says they'll pray for a cure, I refuse. I believe a cure will be available one day but don't pine for it.
I'd rather people pray I have success, no matter how I am. I'd like to open up an innovative advertising online company, write books, sell word puzzles I've created, but my biggest goal is to continue to write and to be a best selling author.
[Above] Untitled 4 (Photo by photographer unknown, year unknown)
THE FUTURE
After coming so far, nine years of sickness, literary success, animal motherhood, love, lessons, and isolation, I am far from giving up. I didn't live all these years just to drop dead when things started happening for me. Every opportunity to avoid anaphylactic shock is taken, and every day I will remain in my bubble.
My goals will continue to be met through my webpage. It will grow to include more books, my own software, more music columns, and more puzzles.
My dream is to start a charity fund called Seasoned Wells through World Vision. All the money would go to wells and water pipes in places World Vision cannot reach due to lack of sponsorships. I intend to put forward a donation and encourage others to donate to this fund. During my illness I was unable to drink water, so I can empathise with those children who don't have safe drinking water, and often have to walk days for it.
I'd also like to encourage more joy in the world. The sick need cheering, the busy need breaks, and the elderly need love. I want to shower hospitals and nursing homes with gifts to entertain their residents, donate to no-kill animal shelters, buy books and gifts for kids in poor countries, and generally spread joy. Life is hard, and we all need a break.
I will live with my family forever because moving would threaten my life. This does not bother me now I'm an adult; Mum and Dad are more friends than disciplinarians. We've always had a good relationship. In that case, the man I choose will live with us in my section of the house. My family's selfless act of making the entire house chem-free is the reason I'm not restricted to a plastic bubble.
The irony of success is we don't have to have a shelf of awards. All we need is to be ourselves and deal with our lives as best we can.
About the Writer Season BubbleGirl
|
Season BubbleGirl is a writer with the added challenge of Multiple Chemical Sensitivity. A Doggy Diary was her first published book. At just twenty five years of age, Season is a rising and versatile author. She has written a large variety of fiction, poetry, articles, and word puzzles. Her books include: PDA Manual, (Toshiba Australia, 2004), A Doggy Diary, (Holy Fire, 2004; Carpe Diem, 2006 - available through shaminosrealm.com.au), Absolute Individual: Life In A Bubble, (Poseidon/ Fultus, 2005 and available through Angus & Robertson), The Christian Jokes collection, (Self-published, 2004), Feline Funnies, (Self-published, 2005), Doggy Jokes, (Self-published, 2005) and Bloopers and Super Dooper Errors, (Self-published, 2005). All the joke collections are free. Despite some very real disadvantages, Season does not see her 'disability' as stopping her from achieving her goals as a promising new author. Season BubbleGirl runs her own unique and popular website www.bubblegirl.net, "where her individuality shines". |
[Above] Photo of Season BubbleGirl by BubbleGirl's Mother, 2005.
I Next I
Back I
Exit I
Thylazine No.11 (June, 2006) |
