“GIFT OF PRESENCE”

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              Shared by Rani

Dear All. 
Three of us  visited Chandra on he 27 th October. We experienced a  moment of great happiness ,when  our dear colleague Chandra “ MOUTHED” our Names as we entered the room. With the help of  Dear Rohini,’s ability  toLIP READ we were able to engage in an interactive , non verbal communication withChandra.
, for about half an our, recalling past events,  our time in Hong Kong etc
 Words Can’t express our appreciation and gratitude to dear Rohini for the untiring , Physical. Emotional, Spiritual, palliative support  provided to Chandra on a daily basis for the past eight years.
Thereafter spent a few hours of quality time with Rohini exchanging views  over a cup of tea and goodies.
It was an unforgettable day of “GIFT OF PRESENCE” with CHANDRA.
Rnai Head Shot
    Rani

10 thoughts on ““GIFT OF PRESENCE”

  1. Thanks Simone, for sharing the news and details of your visit to see Chandra.
    To see in situ the daunting task and how Rohini manages is a lesson on human affection, endurance and an eye opener.
    Of course the mental toughness and endurance of Rodda, to my knowledge has no parallels.
    The entire team is fully alert, geared and focussed in keeping our mate alive and his wonderful brain active, despite many odds including frequent uninformed power failures rampant in our blessed motherland!

    For such a long time to look after round the clock, a bedridden patient with quite severe manifestations of MND without any set backs, including pressure sores, by itself is a heroic achievement of an astute and extremely dedicated wife and the team.

    Probably as you three must have felt, we too realised Rodda does appreciate friends,well wishers and batch mates, visiting him and the little we can do is to make him and the caring team realise that ‘ medical entry batch ‘64, does not forget friends who are considered more like siblings’
    Long live care and togetherness of batch 64
    Ariya

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  2. Thanks Rani for sharing this intimate moment with a colleague.The photograph tells a story but we are unable to comprehend the thoughts of the one who is the centre of this visit.MND is a devastating disease and makes the person unable to have volitional control of many of the activities of daily living that we take for granted, BUT the mind is clear and no one knows what his experiences are.! Imagine being aware that every act of breathing is dependent on a machine and being unable to express clearly one’s fears.It is clearly a labour of love of his dear wife to keep him alive over the years since his diagnosis.Good on those who visited him and better still for the contribution from the book sales from Annesley.Should we ask his wife whether she needs monetary help for his on going care.? If there is a need surely we can all help.This is a very sensitive issue but someone close to the family should be able to advise.Before we offer help, we need a consensus on this, so please air your views.A sad story of a colleague, and there for the grace of God, it is not me. Eddie.

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    • Dear Eddie
      I think we should try to help Rodrigo without making his wife feel that we are intruding in to his life. I think it is an act of human kindness to help some one like that and more so when that person is a colleague of ours with whom have moved for 5 years. To see him in such a state is very sad and to have been in this state for 8 to 9 years is terrible. I do not think for a moment that I could have gone through life like this. He is very courageous.
      I think through this Blog we can discuss on plans to help him. I am so thrilled that Annesley’s book brought us closer to Rodrigo. Praxy

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  3. Dear Rani
    Thank you posting the details of your visit to see Rodrigo.It is indeed very sad to see such a clever colleague of ours in this state…for that matter to see any human being in this state. I was pleased to hear though that he still enjoys cricket matches and great admiration goes to his wife who is toiling day and night to keep him going and free from dreaded bed sores.Praxy

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  4. Thanks Rani for posting the picture and the comments on our web site. You sent me this picture in a separate e mail and I expressed Piching’s and my gratitude to you Swarna and Damayanthi for visiting Chandra on our behalf.

    As many of you have expressed , the love and care given by Rohini to her husband is unparalleled.

    Piching and I will be very happy to be a part of group to help Rohini financially.

    Nisantha

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    • Dear Nisantha
      That is great. With the help of may be Dalpe and Lucky too who visited Rodrigo, we might be able to find out how we can help him and then “get the ball rolling” Praxy

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  5. I am fully in support of Eddie’s idea about ongoing monetary help and the need to do it sensitively.

    We faced a somewhat similar situation in our 64 RU as there were batch mates who could ill afford the hotel bills. At that time we let it be known that there was a special fund and that the hotel gave us some discounted rooms to help people with hotel bills and transport to and from the hotel. I am not sure how many took it up. I know of two who were grateful but could not take it up and are no longer with us.

    Rohini might accept help from such a ‘special fund’.
    Regarding power cuts, would the purchase of a small generator help or has he already got one?

    These are just my thoughts. I have no idea how practical/useful they might be – eg. should we set up such a fund? who would accept the responsibility for ‘managing’ it? Are such needs likely to be mainly in Sri Lanka? Who is to judge and flag up ‘needs’?
    The more the questions that are raised, the more it appears that this is a task that might be rather too complicated for most us who are in in our seventies. Of course it could be any one of us who is next in line for help.
    CJ

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  6. Thanks CJ,
    Your suggestion of having a common fund would be great
    In fact there may be few other mates who too could benefit
    Rather than paying to tax man ‘death duty’ some sort of a trust
    If could be set up to support ones in need would be a good projet
    Ariya

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  7. Hi there Praxy, Nisantha,CJ and Ariya, Let us not get too ambitious with our helpful suggestions.My input was pertaining to this particular case,knowing that there was a request for liquid nourishment by his wife via our colleagues in Colombo.At this time the focus should be on this case and a colleague of ours close to family could enquire and report back if any assistance is required in the first place.I think Dalpe and Lakshman were involved in the initial request.It is best for them to enquire if any help is required and then try and address the issue.This is my opinion.Let us hear what the others have to say.

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