"For all the mothers fighting For better days to come
And all my women, all my women sitting here trying
To come home before the sun
And all my sisters
Coming together
Say yes I will
Yes I can"
Singer Alicia Keys tried to capture the essence of every woman through her song “superwoman”. There are women in this world achieving great things against all odds.
What is common between 27 year old Maggie Winston from Kenai, Alaska, Pauline Siegel from Ohio, Grace Mitchell from Pennsylvania and Sushma Rani from Ghaziabad. They all suffer from a rare neurological disorder called Transverse Myelitis (TM). They have defied their disability and have been great achievers showing a remarkably positive attitude to life.
Transverse Myelitis is a neurological disorder caused by an inflammatory process of the grey and white matter of the spinal cord, and can cause axonal demyelination. It is an auto-immune disorder very similar to multiple sclerosis. TM inflames the spinal cord, causing pain, weakness, and often paralysis. About 1,400 new cases of this disorder are diagnosed each year in the United States.
Hope these stories inspire people with disabilities to remain as active and healthy. Women have it in them to rise to the occasion.
MAGGIE WINSTON
Maggie has the most incredibly indomitable spirit- On her twin son’s birthday, she was diagnosed with TM. She woke up at about 8 o'clock in the morning with a severe pain between her shoulder blades. Within four hours, she couldn't move anything below her arms. She was admitted to Providence Alaska Medical Center in Anchorage. After one week in the intensive care unit, one week in the neurological unit and a week in rehabilitation, she started getting better. Almost two months after she first felt the pain in her back, Winston was transferred to the University of Washington Medical Center, in Seattle, for six weeks of rehab. Daily treatments involved 1 1/2 hours of physical therapy followed by 1 1/2 hours of occupational therapy. Maggie became totally paralysed from neck down and ventilator dependent. Maggie was a hairdresser. Hairdressers from A Star Reflection Salon in Kenai, have conducted fund-raisers in Winston’s name.
She is no more ventilator dependent but never regained any movement in her arms. She is a college student. She is also support group leader for Alaska for the TMA.Since her attack she had to face enormous and difficult challenges. But she has faced all her challenges with a broad smile.
My motivation is my children. I want them to know that nothing is impossible, and I can't just tell them that... I have to show them” ... said Maggie.
SUSHMA RANI
Sushma got TM in 2006. She was on her way to school when she felt that her legs were not moving properly; later on her hands were not moving either. Eventually she lost control of all body below the neck.
Now, after 4 years she has sensation in all her body parts. She can move her right leg properly but has a little problem with the left leg. She cannot move her fingers. Presently she is doing B.Com from Delhi University, gives tuition to children during daytime. Her hobbies are painting, clay painting, mehandi designing and cooking.
Everyone’s life is a unique combination of events, some of them may seem as setbacks, but these setbacks provide the uniqueness to our life, so enjoy every moment because no one’s life is perfect. It’s how we live it…. Every event provides lessons on how to live fully. It’s you who set limits to your life. Mind has infinite potential. Let it flow…
PAULINE SIEGEL
Pauline Siegel was experiencing flu-like symptoms for a few days. One morning she stepped out of her shower and felt severe pain. She was paralysed from the waist down within seconds. Pauline was diagnosed with TM in 1994. She was in an acute care hospital for a week after her attack. Once she received IV steroids and her doctors were comfortable that her condition had stabilised, she was transferred to a rehabilitation hospital.
Pauline was completely paralysed from the waist down. She had absolutely no bowel or bladder control. She could move nothing below her waist. She was at a rehabilitation hospital at The Ohio State University Medical Center for almost two months. She did outpatient physical therapy for over a year!
She lost most of the muscle function down her lower back and down through the back of her legs. So, Pauline can bend over, but she can’t get back up. She is able to walk with canes, and if she goes to a mall or museum or some other place that involves a lot of walking, she uses her wheelchair. Pauline has adjusted to her physical limitations and manages to lead a very good and productive life. In spite of daunting odds however she has now risen to the position of Second grade teacher.She was a kindergarten teacher when she got TM.
Pauline was placed with a service dog named Kazu from Canine Companions for Independence. Kazu is awesome; he does what Pauline tells him to do and he remains focused on Pauline in school. Kazu also picks things up off of the floor for Pauline. Kazu opens and closes the doors in the bedroom every night for her. Pauline is the perfect leader for Kazu – and it is hard to imagine a better follower than Kazu.
Pauline has fought to gain more mobility, going from the wheelchair to a walker and finally to canes.
A few months after Pauline got home from the hospital, she and her husband, Sandy, became involved in establishing The Transverse Myelitis Association (TMA). Sandy is the President of TMA. The Transverse Myelitis Association is an international advocacy organisation that offers information and support to its members. The organisation has grown from 187 members in 1997 to more than 7,800 members today. The members come from more than 80 countries around the world. There is a wonderful support group of the TMA in India.
Pauline has found a way to turn a horrible tragedy in her life into a positive role for herself and for the many other people she has touched through her work for the TMA. Through her efforts people who experience this very difficult disorder know that they are not alone.
GRACE MITCHELL
Grace was diagnosed with Devic's Neuromyelitis Optica (NMO) in 2005. She had six episodes of NMO, which included three episodes of paralysis and three episodes of ON. Despite suffering from this disease, she manages to maintain her passion to reach out to fellow patients of the disease who are in need of support and comfort.
It has been her mission to collect information and the most current research updates on NMO, and she devotes her time to encourage and uplift others who are similarly diagnosed. The Discovery Channel's Discovery Health, featured Grace's story on an episode of Mystery ER.
NMO reseach has literally exploded in recent years. Thanks to the dilligence of researchers, so much more is understood about the pathology of the disease. Todays' patients are also better educated and are taking a proactive stance re: disease management.
We have great reason to hope that more viable treatment options will be discovered and that the research effort will one day lead to a cure,’ said Grace.