Message from Ellen

Saturday May 19th:  David flew home to New York after he and Ollie came to see Tom in the morning.  Ollie stayed and sorted out the projector for the two of them and Raj and Erin to watch the Cup Final in Tom’s room.   During all this Tom was doing 25 minutes off the vent each hour.  Susie also came to see Tom in the evening so he had a lovely day and by the time I came to see him he was ready to sleep.

Sunday May 20th:  Tom has been enjoying eating little bits here and there.  Today he had some mash with gravy along with some delicious custard that we think tastes like clotted cream.  I have to test the food first of course  . 
:)  
Tom spoke to David, Josie and Lucas in New York.  Laura, Laura, Gary and steve came to visit Tom and when they left  Reuben and Yousef came.  Tom really enjoyed them visiting.  He is now sleeping from it being so busy the last two days and also doing 30 minutes off the vent every hour is very tiring.  Tomorrow will be an hour on and an hour off.   Tom loves being able to talk but he has to strain his neck muscles to make speech sounds and it can make his throat sore: he is resting it now by talking in whispers!. 

15 thoughts on “Message from Ellen”

  1. Maria and Peter Leisinger sent a message on May 17th: “Dear Tom,
    we know a lot about your accident and the recent events from the homepage. We admire your patience and your courage. We remember so well the times you were in Malans or when we met in Oxford.

    I have nearly stopped my work as a psychiatrist and concentrate now more and more on my art, my wood saculptures. I have sent you a picture of my newest sculpture, a piano player: it’s a string puppet, because we have a small project about music: a friend of us makes music and I let the (life size..) puppets move togehter with his sound, this will be in a concert- ( ..cum vernissage) in September. Part of the setting will be some listeners with their different faces and approaches to the music.

    We think every day (many times) of you and hope that you will not lose your mental strength : You are going through a very tough school now, but it will teach you many things of which we have no idea.

    All the best ! Maria and Peter”

    The picture was posted on this site May 17th

  2. Tom – each little step in the right direction counts, as they all add up to make a HUGE difference! I have followed your “off-the vent-progress”: at first a few hard minutes, then some more. Now 25, even 30 minutes each hour. And today already an hour on and then an hour off … We are all very proud of you and will keep being with you in your ongoing fight! Lots of love, the Ernsts

  3. hey tom,
    sorry this has taken me so long, no real excuses, but a few explanations – i’ve been busy caught up in dissertation writing, and exam taking, (plus i have to admit im pretty crap with computers and websites!- i hope ive left this comment on the right page!)
    couldnt quite believe it when i heard about your accident, to say how sorry i am doesnt really do it justice, something like this couldnt have happened to a nicer guy and it breaks my heart everytime i think about it.
    i’m finished with uni now and back in the westcountry in a bit of a ‘transitional period’ i.e. bumming about. i’m absolutely devastated that there wont be a repeat of last summer’s antics in levanto this time round, had such a great time with you, raj, laura, gary and the rest of your crew (as well as hazel and ellen obviously!). that was perhaps one of the best summer holiday’s ive had.
    saw ellen about a month ago which was lovely and it was re-assuring to hear that youve been making progress. all of us at moy road have missed your weekly/fortnightly jaunts down to cardiff but i hope to make it down to stoke mandeville very soon to visit you.
    lots of love
    george x

  4. 30 mins off the vent is great news man! I remember not so long ago when you were clocking about 3 mins so you’ve come a long way. Hope you enjoyed the match, I didn’t get to watch it all but a heard a lot of it (I was at the barbers).

    Hope you are enjoying Heroes, it’s the finale this week and it looks like it will be freakin awesome – be sure to get the rest from Wayne when you can.
    Anyway, keep it up and take care man!

    Lao

  5. Dear Tom,
    I’ve been following your progress on this wonderful website. I admire your incredible strength and courage, and the pictures of you smiling are really heart warming. My whole family and I send you all the positive energy we can gather. I imagine a hundred thousand angels by your side. Keep up the good work Tom.
    Lots of love, Sherin x

  6. Hi Tom, good to hear you keep progressing steadily! I was reading about your boring mornings and I thought…
    How about audio books? I thought it might keep your curious mind a little more interested…And it would save you from Sean Paul:)
    Just a thought. Keep smiling:)

  7. Dear Tom,

    After coming upon your blog a number of weeks ago, I have been keeping track of your progress and all the wonderful posts you are getting from all over the world.

    We do not know each other, but my heart goes out to you, your family, and your friends. You are a lucky guy that you have all these wonderful people who dote on you and do everything they can to help and support you in your progress. When I look at the pictures taken in the hospital, I see so much love, tenderness, and devotion between all of you. My favorite is the one with Ellen. She must be one terrific young lady.

    A lot has been written about your strength, courage, self-discipline, perseverence, etc. I can only subscribe to that. You are a truly amazing person. And because you seem to have this incredible will and energy to make steady progress towards getting better and better, I wanted to encourage you in that and share with you my belief in the physical power of thought. I am not necessarily talking about positive thinking, which is extremely important, too. I am talking about the visualisation of healing and movement. I have heard about cases where patients beat cancer by visualizing the restoration of healthy cells and the elimination of the sick cancer cells. Neurolinguistic Programming practitioners have been working with these techniques for many years. Our bodies react to our thoughts more than we give them credit for. If you are interested, I can dig out a script for self hypnosis that you can follow. But maybe your physio helpers are already working with you along these lines. Also, there is a video out called “The Secret” that might give you some inspiration. It is a little corny, I admit, but bottom line it has a valid message. You can watch it on the internet.

    I have thought a lot about Barbara’s last post on goals, realistic and unrealistic ones. I agree that we may need both. And couldn’t it just be that unrealistic ones become realistic over time? In a day and age when progress is so fast that we can hardly keep up with it and much less predict it, new knowledge and opportunities arise every single day. Even though some of our goals may be out of reach right now, believing that they may be reachable one day and striving to be well prepared to grasp them when they move into reach seems a smart thing to do. Now, I do not know you, but I have the feeling that you have those BIG dreams and goals and I encourage you to hang on to them. I have them for you, and I am getting the feeling that a huge number of people out there have them for you, too.

    Oh my, my kids would say, here she goes again… Thanks for listening to my ramblings.

    Fondly,

    Sy

  8. Hi Tom
    Great to read about your progress. Terrific that you are breathing off the ventialtor more and more and able to talk. Have been checking on this site regularly. Good to see the photos too. Your mental strength and determination is a model for us all.
    love
    Chrissie (in Manchester recovering from FA cup final)

  9. Hi Tom – sorry I didn’t make it to Stoke Mandeville today . Sounds as if it has been another day of progress, with more and more time off the ventilator.
    It is just over six weeks since we flew into Luton from Bulgaria in the air ambulance, with a doctor and a paramedic whom I will contact soon, to tell them how you are. I was so impressed with the way they looked after you in both the 2 ambulances, and on the flight. The staff in the Military Medical Academy in Sofia were also skilled, efficient and dedicated. They were also very good to us, your family – we broke all their rules about visiting hours, because they realised you needed us there to talk to you in English.
    Now there’s this great network of people communicating with you and with each other. The staff at my health centre , for example – they have been following your progress daily, like masses of our friends, even though they don’t all know you. The second day I went back to work – I am doing a few surgeries each week now that Michael is recovering – there was a huge bunch of flowers on my desk, and a card, and strawberries, and a bottle of wine – really to celebrate your progress.
    Today I am intrigued by ‘totalstranger’ and her comment – hope Sy will let us know how she located your website.. ? xxx S.

  10. hi tom my boy

    its geddi
    signing in from NYC. im here painting graffiti and doing an internship in a publishing firm, im doing graphic design stuff. i heard from my mum today who said she’d been to visit you.
    its great to hear about your progress- speaking now, off the vent a bit more, maybe even getting out the room on your own set of wheels soon.. thats awesome man.. really great 🙂 my mum said that next time she sees you will be with me.. thats true man. my thoughts have been with you, i will come and see you as soon as i get back.. bring you heaps of unes… some artwork( worth millions in yars to come) all thatjazz. keep your head up dude… jah bless
    ged i

  11. Hey Tom…
    So good to read about all your progress lately, its absolutely amazing.. keep going and whatever you do dont let Els steal all your food!
    I have just finished my ‘conferance’ at the Academey- (still cant understand why it not called a presenatation-sounds a lot less scary). My cow and chicken painting (which i told you about a few weeks ago) went down an absolute storm, hilarious….. God knows why… its a yellow chicken with a spikey blue head and a huge cows skull in the background….
    At the conferance numerous tutors asked me how you are and send lots of love your way…
    I’ve just got near enough two days left here now, feels weird, its all come around so quickly.
    Heres a story- a couple of nights ago a few Bulgarians decided to have a full on wrestling match in the room above me, when i say wrestling match i mean there was a professional there… it sounded horrendus and it seems they are now minus a front door… .Funny.
    Im really looking forward to seeing you on Saturday..
    Lots of love
    Blod xxxxxxxxxxx

  12. On Sy on goals!
    Robert MacNamara’s point was that when responsible UN bodies set goals they know full well cannot be reached – which appears on current performance to be the case with all the Millennium Development Goals except for halving poverty (and that only because of China’s performence; if you take China out then the progress is dismal) – THEN this is a waste of public money, especially, I would add, the public money taxed from poor people themselves. So what are UN institutions playing at? Making some kind of collective comfort blanket for the already comfortable?

    On personal goals, I agree with Sy, and this is where Tom may be more interested in this blog and in the fullness of time have something to show all of us. If we are blind and our goal is to see, does that goal help us or is it irresponsible and simply a source of frustration and misery? YES IT HELPS! Ved Mehta, who is completely blind, ‘sees’ through vibrations on his skin which sighted people don’t know they have. He seems to see very well too.
    Meanwhile learning to use braille is sensible and ‘realistic’.

    I am not so sure about the physical healing power of (positive) thinking because you can’t have it both ways. You may be much healthier on account of having a great deal of life force, joy in the day, visualisation of healing etc, but then when you then fall ill it is not necessarily because you have failed – or switched it off for a while. I think that positive thought, low sights and therefore pleasure in small things and a GSOH are good in themselves. And I am very lucky to have lived alongside an extraordinary proof of this!
    Have a good day everyone,
    Barbara

  13. To Susie on her blog:
    Sure, the tokens of love on your desk at work are for Tom from people who don’t know him and want to celebrate the progress he’s making;
    but they are also for YOU from people who DO know you! You are one of those people who give generously and much more easily than they receive!
    And there are many such ‘flawed’ people moving around Tom and your big family right now!
    Barbara

  14. Hi Tom, It is great news that you are now breathing for longer and longer periods on your own. Keep up the good work. I am full of admiration for your pereverance, determination and courage. Wish I could tell some of my students how to find the resources you have found! Am hoping to meet up with your mum at the weekend in Amberley, and share news of you. All my family,Ben, Leo Zoe and Elfie(not sure if you remember them?) send healing good wishes to you across the seas: Ben in Senegal, Leo in Prague, Zoe in Spain and Elfie in Bristol, and us here in St Mary’s. Love, Zanna

  15. Great to hear about your progress off the ventilator. And food! I remember when you were dreaming of fruit juice so it seems there is real improvement. It was moving to read the long and very practical comment from Sy , the “Total Stranger”. Your struggle has touched alot of hearts. Lots of love to you, your Mum and Ellen.
    Ros ( your Mum’ s old friend from university)

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