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Published: August 20th 2008
NGUYEN
A bed of rough wooden boards and a leg chained to the window..... Just as I was finishing up after a long day, I was asked to visit a boy who was very sick. I was tired, but it was on my way home so I agreed. I am very glad I did!
The sick boy lived close to my house in Hoi An. I went to visit him to see what the problem was and if I could help. I was taken to his house by a friend of a concerned neighbour and introduced to the boy I would soon know as Nguyen. That in itself was a bit strange, as it is usually a family member that would be requesting help. However, I was tired and missed that little bit of detail.
Nothing in my past experience in Vietnam had prepared me for what was about to unfold............
I walked into the house and on a bare wooden planked bed to my right, lay a boy who looked like someone straight out of a concentration camp, close to death in foetal position.
A family member was present, and again I had another strange feeling that they were not happy I was there. Usually when I arrive at
SHERRY & NGUYEN
Sherry is pictured showing Nguyen her daily diary full of beautiful images and pictures. someone's house the family is very welcoming and eager for help and assistance, especially if a family member is very ill. The energy in this house was not welcoming, so I thought it wise to tread carefully, reminding myself at that point that I had not been invited by the family, but by a concerned neighbour.
I sat down next to Nguyen on the edge of his bed. He reached out to hold my hand and I was happy to oblige. As we sat holding hands, I continued my questions to his family member, trying to get as much information as possible.
Of course the first question was, " What happened to him?"
The real answer to this question is probably something that we will never know, or how the chain of events unfolded. After posing this same question to many people and all of the family members, the story was different every time. So we are left to make an educated guess.
I continued to ask questions........
When did this happen? When Nguyen was 18, he had a fever.
Does anyone talk to Nguyen or try to communicate with Nguyen? No, he can't talk.
THE ONLY VIEW FOR 12 YEARS
The view from Nguyens bed. How long has Nguyen been on this bed? 12 years.
Have you ever taken him outside? No.
Why is he chained to the window? To keep him from trying to get out of bed, (he often “misbehaves”).
Is there anyone with him during the day when the family is at work? No.
What does he eat/drink? Rice/water and some simple local food.
How does he go to the bathroom? The father holds him over the toilet, and he wears a diaper.
There is a tv/radio in the room, do you turn it on for him? No.
Why? It wastes electricity............
Nguyen ( pronounced NEW-in) is 29 years of age, I will never forget my first meeting with him.
He lay curled up in a ball as I sat next to him, holding his hand with my mind in over drive.
As I continued to talk to the family member I looked at the terrible condition of Nguyen's legs, a result of being chained to an iron barred window every day. He was so terribly thin and in shocking physical condition. Ants were crawling over him. To be honest, my brain was spinning but I realized it would
"MISS MOLLY"
When Molly came to Vietnam to volunteer I am sure the last thing she thought would be doing would be singing to Nguyen. Nguyen had been so sensory deprived that Molly's voice must have sounded like a choir of angels. be best to remain calm and try my best to assess how on earth I could help this poor boy.
Nguyen’s mother passed away several years ago, and his father and sister are the main caretakers. According to the family members, Nguyen is provided very minimal necessities to survive and is seen as a burden - financially, physically and mentally. It seems clear that there is anger/frustration for foreigners to visit, so it is important to act respectfully.
There is no law against not caring for a family member who is severely ill nor chaining a disabled family member to a bed. Furthermore, there is nowhere for Nguyen to go or to be placed. So whatever help is given must be with the endorsement of his family. I realize I must work within the constraints of the current family situation.
Again I asked the family member if anyone had ever tried to communicate with Nguyen, maybe I had heard wrong. Not surprising, the answer was no. I suggested that we try something simple, like asking Nguyen a question and getting him to blink once for yes and twice for no. My translator explained to Nguyen what we
LIEN & NGUYEN
Lien is Nguyen's carer. They are pictured here looking through magazines together. were going to do and to my surprise he blinked once for yes, he understood!
By this stage Nguyen had my hand in a vice like grip. We asked several questions in which he was able to respond to each by blinking either once or twice.
I needed to go home and collect my thoughts, get some advice and work out how best to help him. I promised Nguyen that I would return the next day. It took someone else to peel his hand from mine. He had enormous strength despite his overall very weak physical condition. His grip was more like a plea of desperation. I will never forget the look in his eyes and that look of desperation. It was clear that Nguyen needed a team in place to help him.
Western doctors Dr. Josh Solomon and Dr. John Sherman were more than happy to visit Nguyen immediately and give me their opinion. It’s not exactly certain what has happened to Nguyen, how, or when it happened. but Dr.Josh Solomon and Dr. John Sherman assess that a combination of encephalitis at the age of 18 (virus in the brain), a motorbike accident injury, head trauma,
LIEN & NGUYEN
Lien loves working with Nguyen, they are pictured with one of his communication charts. Lien often pops in to see Nguyen on her scheduled day off each week as she worries about him. broken bones, malnutrition and neglect have left him in this current condition.
Despite his broken body, Nguyen’s brain appears to function normally. He had finished 12 years of schooling before the accident/disease so he is literate and well-educated. He can hear but can not speak. He has movement in his head and neck and little movement in his limbs. I keep reminding myself that no one has bothered to communicate with him for 12 years!
The first step was to try to improve Nguyen's overall health and nutrition, and of course get the dreadful chain removed form his leg! A special mattress was purchased for Nguyen so his thin body no longer had to lay on rough wooden planks.
Lifestart Foundation has employed a full- time day carer to help nurse Nguyen back to health. At first, Nguyen was only able to eat very slowly and found it difficult to swallow. For years he had been fed lying down and had trouble holding his head up or sitting for any length of time. But slowly, with patience, he is now able to sit for long periods of time and can swallow without choking. Lifestart hopes to supply
NGUYEN'S LAST DRAWINGS
Nguyen's last drawings hang above his bed. A reminder of what he was once able to do. Nguyen with daily nutritious food and supplements for as long as needed.
Sherry, one of Lifestart's volunteers, made him a communication board which enabled him to express what he wanted for the first time in twelve years. Over the past couple of month's we have gradually increased the words on his communication board. We found out that when Nguyen was at school he was a talented artist. Two of his last drawings were placed above his bed. We initially gave him crayons to try to draw, but he became very distressed as he couldn't draw a simple line. He cried silently as his hands were so weak through inactivity. With encouragement from his carer over the past few month's, Nguyen has perservered and is trying to write a few numbers and letters on paper.
Molly, another one of our volunteers spent every morning of her time in Hoi An sitting with Nguyen and helping his carer feed him and massage his frail legs and feet. Miss Molly, as we affectionately call her, is a fabulous jazz singer and gave Nguyen much pleasure and joy when she sang for him.
Next, I asked Virginia from Danang via the
SAD & SORRY LEGS
no longer chained though.......... States, a physical therapist, to come to meet Nguyen and offer her suggestions on how best to help. Dan from the U.K who is an occupational therapist was next to visit to give his expert advice.
With all of these people willing to give of their time and expertise, and Dr. Josh keeping a close eye on Nguyen, life is certainly improving for this young man.
A wheel chair has now been introduced. Although Nguyen was frightened at first, he now spends part of every day sitting up in his wheel chair watching the world from the doorway of his house. We are yet to venture too far with him at this point in time, choosing to introduce everything gradually.
The first time I met Nguyen, he locked his hand around my arm so tightly, opening his mouth and struggling to speak yet producing only moans. His eyes watered and a big smile formed when I held and rubbed his hands and feet. His body reaction to gentle caring touch shows the level of neglect and most likely abuse over the years. He was extremely thin and frail, I could wrap two fingers around his leg. He had numerous questionable sores/bruises on his body. Although I can not speak for Nguyen, I can only imagine that every moment of his life must have been a living hell.
I have no idea what the end result or outcome will be with respect to Nguyens progress, I am assured by Dr. Josh that this has been, and continues to be, a very successful intervention. Nguyen is now being given the best possible chance of attaining a better quality of life. There is no instant result for Nguyen, but rather a slow and gradual improvement that is best assessed monthly.
With intense rehabilitation, the goal for Nguyen is that in the future he will be able to operate as independently as possible…and to be assured the comfort that someone cares.
Lots of Love from Karen.
www.lifestartfoundation.org.au
Nguyen (boy) appeal:
Would like to help Nguyen on his road to recovery? Monthly costs for his carer and nutritious diet are $130aud.
Please register your interest via the comments section of this blog.
Online donations can be made via the Lifestart Foundation website or a cheque can be mailed to
182 Buckley Street, Essendon.3040 Victoria. Australia.
Please contact Karen if you prefer to do a direct deposit into the Lifestart bank account.
Our last appeal was to help Nguyen ( female) please click here for her blog LIVING WITH A BROKEN HEART.... Lifestart supporters very kindly have covered her monthly care costs for over one year. Thank you so much!
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eva haddad
non-member comment
Nguyen
Hello Karen I would like to contribute towards helping Nguyen have some dignity and some comfort. It is unbelievable. I will drop off a cheque at the school. All my respect and admiration to all of you. Eva