മദ്ധ്യേയിങ്ങനെ കാണുന്ന നേരത്ത് മത്സരിക്കുന്നതെന്തിനു നാം വൃഥാ..
Wednesday, December 15, 2010
ജീവിതം നല്കാന് മടിക്കുന്നതൊക്കെയും ജീവിച്ച് ജീവിതത്തോട് ഞാന് നേടിടും.
RoseMarie (Rose) Siggins
The Woman with Half a Body
ഈ അതിശയകരമായ ജീവിതത്തെപ്പറ്റി അറിഞ്ഞപ്പോള് കൂട്ടുകാരോട് പങ്കു വയ്ക്കണമെന്നു തോന്നി. ആര്ക്കെങ്കിലും ഒരു ഉത്സാഹത്തിനു കാരണമായെങ്കില് എന്റെ ഈ ശ്രമവും ധന്യമായി.
Rosemarie (Rose) Siggins - Extraordinary People
Born with a rare genetic disorder known as Sacral Agenesis, Rose had severely deformed legs with feet pointing in opposite directions. There was no feeling in the legs and, as a child, she was in danger of harming herself. When she was two years old her mother, after consulting with the doctors at the hospital, decided that the best course of action was to have the legs amputated. This insightful decision by her mother allowed Rose to lead a fairly normal childhood.
Rose grew up, with her mentally handicapped brother, in Pueblo, Colorado. Rose believes her parents made the right choice as she cannot imagine being confined to a wheelchair. She describes her physical condition in her own way "If you take a Barbie doll and remove it's legs, the region you are left with is what I have. I have all the female working organs, the only reason I sit shorter or more compact, as people say, is because I'm missing four sections of my spinal column".
Rose's great passion in life is cars. All things automotive, cars, trucks and V-8 engines have been a big part of her life since she started playing with her father's toolbox at the age of 3. When she was sixteen, her parents bought her a car. A used car which Rose and her father adapted with hand controls so that Rose was able to drive herself around. She is rebuilding a 1968 Mustang which she plans to race.
For years, the administrators at the local school forced Rose to wear artificial legs, they wanted her to look like everybody else. When she was in eighth grade she rebelled and refused to wear her prosthetic limbs, turning up for school on her skateboard. She wanted to be normal, and her normal is Rose who walks on her hands and has no legs. After meeting with her parents who were being very supportive, and realising that Rose was very stubborn, the school relented and allowed her to return, without her prosthetics.
In 1997 Rose met Dave Siggins who worked in an auto-parts store, they flirted over the phone and their relationship quickly blossomed, but it was going to put Rose's life in danger. When they decided to get married, Dave joked with her that she didn't have to worry about getting cold feet. Rose and Dave were married in 1999, it was her dream come true. It was a traditional white wedding and Dave, still joking, pointed out that the cake was bigger than she was. Rose and Dave lead a normal sex life, the only comment Dave has made are that the legs don't get in the way.
Two years into their relationship, Rose discovered that she was pregnant. Rose's pregnancy was extraordinary and ground-breaking, no-one with Sacral Agenesis had ever given birth. The only doctor who didn't advise Rose to have an abortion was Dr. Wilson who says "This couple have committed themselves to a pregnancy and she is, basically, laying her life on the line because nobody knows what this means, no-one has lived this experience before. With the first counselling with Rose and David I was very specific and told them that they have to know that if they move forward with this that she could die." The main concerns were with her lungs being compressed, as the baby was likely to grow up the way because of her short stature. The other concern was how she would tolerate a caesarean delivery, because the baby was lying transversely she would have to be opened across the top, a true 19th century caesarean delivery. Rose told her mum that if there were any complications and there was a choice between her life and the baby's, she should choose the baby.
Having given birth to a miracle baby, Rose was about to experience a terrible tragedy. Luke had just celebrated his second birthday when Rose's mother was diagnosed with terminal cancer. She held the family together, provided an emotional pillar, and organised the vital day-to-day running of the house. Her death had a disastrous effect on everyone around her. Rose's father had already had the onset of Alzheimer's and dementia so he, like her brother, didn't understand what was happening. It became apparent that Rose was next in line to run the family and do everything her mother had done. As well as looking after her son and husband, Rose now cares for her dad and brother. Rose's dad, James, has smoked all his life and now has to rely on a constant supply of oxygen. He is also suffering from schizophrenia and the onset of Alzheimer's.
Her brother, James, is 29 years old but has the mental age of an 8 year old. He's on psychotropic medication, needs regular supervision, and has occasional violent outbursts. Despite his mental health problems, Jimmy is holding down a cleaning job in the local taxi office. While everything is going well at work, Jimmy's erratic behaviour at home is about to get him into trouble. Unbeknown to Rose, her dad had allowed Jimmy to take his Cadillac to work, Jimmy doesn't drive so the inevitable had to happen, so now Rose has to fix the Cadillac.
Rose has great moral strength and a remarkable attitude she says "A lot of people with disabilities feel that life owes them something, and I was raised in a way that no, no-one owes you a dime. The world doesn't owe you anything, this is what you have and you use your resources and you get through life. My personal opinion is, get up and go for it, just do it."
Rose's story as a woman who has overcome bewildering obstacles and succeeded despite seemingly impossible odds is a real life example of the American dream. However, away from the limelight and behind a determined self-assurance there's another side to Rose. With the usual day-to-day problems and the added stress of Jimmy's erratic behaviour Rose is feeling the strain.
She takes refuge in the garage where she can oversee the installation of a new V-8 engine in her Mustang. At last after weeks of hard work Rose feels the Mustang is ready to hit the race track, which will be another life-long ambition achieved.
Incredibly, despite the risks involved, since this article was published Rose has had a second baby.
Note: The condition Sacral Agenesis may sound like or be incorrectly spelt as sacrillo genesis or sacralla genesis.