Myalgic Encephalomyelitis(ME) also known as Chronic Fatigue Syndrome (CFS) is one of the debilitating diseases that has affected reportedly 17 million of people all over the world.Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. The syndrome varies from patient to patient. People with lighter syndrome recover from the illness and lead a normal life, but people with severity of the cases become bed-bound,paraplegic with difficulty in eating and speaking. What triggers the disease is still a mystery. A simple flu or viral fever can leave one stricken with CFS. "One Last Goodbye" authored by Kay Gilderdale gives an account of the horrible life led by her daughter Lynn Gilderdale whose life was mercilessly cut short by this vicious diease.Lynn was barely 14 years old when the disease assailed her body. It was a routined BCG vaccination that triggered the ailment in Lynn. Immediately after the BCG jab, Lynn fell victim to a series of diseases including severe viral fever, tonsilitis, bronchitis which left her totally sapped and drained of all energy. She became completely bed-ridden within 6 months. Since she developed difficulty in swallowing food, she was fed through a nasogastric tube at first which later on was replaced by a Hickman line. Hickman line is a line "permanently inserted into a major artery leading to the heart." Within a year or so she lost her speech too. In her mother's words ""the disease that had stolen her life and left her completely bedridden, unable to walk, talk or even swallow." For 17 long years she suffered the ailment which ravaged her body completely and restricted her life to the four walls of her room. The ruthless undreamt-of blows came from some medical professionals who, deficient in their knowledge about ME, proclaimed that Lynn was pretentious and merely faking her illness in order to escape from school. Some even implicated that Lynn might have suffered some terrible sexual assault during her childhood at the hands of her own father and so out of paranoia, she started faking her illness which included violent convulsions, partial memory loss, vomiting, fainting frequently, paralysis from chest down etc. I wonder she had had to be an oscar winning actress if the words of the ignorant doctors were taken to be true.Back in 1991, when Lynn fell ill with ME, very few people were actually aware of the existence of ME and its symptoms. Most of the doctors and even best known hospitals, designated to specializing in the treatment of ME, dismissed the disease as something to do with physical illness. They rather treated the patients for psychiatric ailment, thereby worsening and aggravating the condition of the patients further. In Lynn's case whenever she was hospitalized for better treatment, she came out of the hospital in rather worse state than she went in. Her mother stated that she would regret all through her life for leaving Lynn at the Guy's Hospital of Uk for two weeks against Lynn's wish cause she lost her speech completely afterwards.
ME patients develop sensitivity to bright light and sound, and Lynn had her room shrouded with closed curtains. Only a bulb fitted to the aquarium, at 3 feet distance from her bed, used to provide the required gleam in her room. Since she was confined to her bedroom, her parents tried their best to offer her comfort bringing a little bit of life that she missed due to the illness, in her bedroom. She loved fishes and the aquarium was laid nearby her bed so that she could observe their activities for day long. She had about 5 or 6 hamsters which were kept in a cage and placed on a table nearby so that she could feed them and cuddle them when felt. She could not take part in socialization or meet people as interaction with people used to leave her totally wiped out and she took several days to recuperate from the exhaustion.Hence her parents whenever there was any get-together or party held at home used to record the event in video recorder and show it to Lynn so that she could witness what all passed in the party. Undeniably, she was blessed with one of the most caring mothers who willingly confined herself within their home because of her daughter. As Lynn waged battle with her illness, Mrs Kay Gilderdale continued her fight in finding out a miraculous remedy to Lynn's all distress. Unfortunately, ME is a strange disease which affects the neurological functioning of brain making all the actions of our body go haywire and till now, it is not curable. Lynn went through torrents of test which showed no symptoms of abnormality. Her blood was fine, CT-Scan showed her brain was in perfect order and other tests also exhibited no clear sign of any problem. Hence doctors started believing that the problem was in Lynn's mind. One doctor even commented that Lynn suffered from "Lynn Gilderdale syndrome".
Since ME is not very common, an array of misconceptions and prejudices relating to the disease are predominant in the medical world. Sometimes even patients suffering from slight stress and exhaustion are considered as having ME, whereas actual patients suffering from ME show more severe symptoms. Usually, exercise or physical work out is considered beneficial for anyone suffering from physical disability, but patients ill with ME get into a worse state if they work out. Some doctors dont believe that any disease called 'ME' even exists and they treat ME patients for mental illness taking every of their discomforting syndrome as mere pretense. What's worse when Lynn contracted a skin infection called 'ringworm' from her cat and developed itchy red sores on different areas of her body, the doctor treating her opined that it was self-inflicted and that Lynn had done this to herself purposely to get 'attention'. He even summoned a psychiatrist to tend to Lynn. Her parents had really a tough time convincing the doctors of the actual cause of her infection.
Years rolled on with Lynn showing no sign of improvement and slowly her body gave away to a series of other breakdowns - liver dysfunction, heart problems, severe osteoperesis, adrenal failure, thyroid gland dysfunctioning and kidney problems, among other things. 17 years is a precious period of anyone's life or for any pain to get healed. Lynn and her mother had been fighting against ME together with the hope of Lynn being able to lead a normal life one day once she recovered from the disease. But all pains endured and all efforts undertaken during the long span of 17 years proved futile as Lynn instead of getting better was turning worse. Her suffering slowly forced her to come to a decision of ending her life as death seemed to be the only respite possible from her ugly life. During the last few months of her life, she was suffering from bouts of depression which evermore hardened her determination to end her life and she cajoled and coaxed her mother to assist her in suicide. The last few hours before her death was riddled with tension and anxiety as she plunged into an unconscious state with the morphine overdose and her mother kept awaiting her death with bated breath. The account of that phase was very emotional and touching and I prayed that no mother ever had to go through such agony of seeing her daughter or son die infront of her eyes.
What could be more cruel than being held responsible for the death of one's own daughter? As if Lynn's death alone was not enough to shatter the spirit of Kay Gilderdale that she was accused and imprisoned, under criminal suspicion, of 'murdering' her own daughter. The last few chapters describing Kay's battle against the pointed fingers at her involvement in Lynn's death was charged with emotions and would wring tears even from the hardened of hearts.
Below is shared the link that has excerpts from Lynn's diary which written few months prior to her death is open only to some select few.
http://www.dailymail.co.uk/news/article-1246053/Lynn-Gilderdales-heartbreaking-online-diary-chronicled-life-suffered-ME.html
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