- Posted August 9, 2014 by
This iReport is part of an assignment:
Impact Your World
Red Shoe Day: A Day to Remember Those Lost to Invisible Illnesses
The first annual Red shoe day was held on July 25th. Red Shoe Day was an event put together by Karen Smith from Australia and Lisa Hilton from the United States, to remember all those we have lost to invisible illness such as Lyme, ME/CFS, Fibromyalgia and the many more illnesses that are invisible. Friends and families of people lost to Invisibile Illnesses were encouraged to participate by wearing red shoes for the day. Some groups had get togethers to celebrate the lives of a loved one.
As Karen explains on her website http://www.worldwidelymeassociation.com/, invisible illnesses are those that are generally "invisible", not only from the outward appearance of the person but they may also lack appropriate testing, research or medical care. Many living with these illnesses are also "invisible" to society, as their health is such that they are confined to their houses, (and many to their beds) for months, even years.
Karen Smith from Australia was inspired to put Red Shoe Day together after losing a friend, Theda Myint on July 25th, 2013. Red Shoe Day was envisaged to become an annual remembrance day to remember not only Theda, but all those lost to Lyme and other invisible illnesses worldwide.
Here are a couple quotes from those who lost someone to an Invisible Illness.
Ellen Morbelli (Lost her daughter to Lyme Disease)
"I think Chris' death has had a huge impact on everyone who knew her. Most people I speak to had no idea that Lyme could kill! Chris had so much love and compassion for others suffering from Lyme. She tried to help any one who asked. She researched everything, and in the end, although she tried every protocol available, there was nothing that could help her."
Sue Morbelli: (Lost her sister to Lyme Disease)
"My sister Chris committed suicide on May 30, 2014 in the morning. She left a mother, father, two sisters, a husband, two nieces, two nephews (one of which she never had a chance to hold), a dog, three cats, her first husband (who also has lyme), and a host of family and friends that all loved her so very much because she was special.
Why did she leave us? I struggle with that question every day. Our phone calls, texts, emails and visits dwindled because she just never felt good. I would get excited when I saw that she liked a post of mine of Facebook, because that meant that she was awake. I would pray for her every day and I am not a religious person. She was supposed to get better. The health care institution was supposed to find a cure. We were supposed to grow old together."
Rick Urbanowski (lost is wife to Lyme)
"Chris worked tirelessly to try to find proper treatment for her lyme disease. We did all that we could within the normal boundaries of medicine and outside of those boundaries. After an 18 year battle her brain became affected and I lost the love of my life."
Carol Adams: Theda's Mom (Lost daughter to Lyme (previously ME/CFS diagnosis)
"Watching my bright articulate daughter suffer the misery that is Lyme was dreadful. Theda had so much drive and ambition. To gradually watch Lyme take away her dreams and not be able to help was soul destroying. The disease just kept escalating regardless of what treatment Theda tried. Again and again I watched her hope destroyed as yet another treatment failed. At one stage she was so isolated she said " no one will notice when I die" theda had always wanted to make a difference in this world. Through her journalism she planned to work on the social injustices, Burma, we had family effected by the regime and had to organise the rescue of her cousin. She was passionate about cruelty to animals. Early in her illness Theda had been offered an internship on one of our top investigative TV program's she was very excited. But was never able to start. As parents we begin to live vicariously through our children and my joy at her successes in life was now out weighed by her disappointments. Caring for her I used to tell her was an honour, I was just so glad I was able to.
Red Shoe Day means so much to me as one of her ambitions is still being fought for and she is remembered. Theda wanted to let the public know about Lyme. To bring it out in the open, how it destroyed lives and that those with it were treated very badly by the medical profession and by our government. Every time she was interviewed for a TV program she suffered repercussions but it was her only way of letting the world know what was happening to so many. I was very proud of who she was. Loved her, of course. But liked and admired her as a human being, loved her company, all these things are a bonus to a parent.
Every time some one posts about Theda, remembers her, helps me as she is still fighting and has made a difference and is still making a difference. I miss her with every breath I take and the pain is a physical ache in my chest that never goes away. Tears push at my eyes when I think about her."