Recent Photos from the Hosptial

Here are some photos of Graham taken recently. You can see him reading his emails which we put into plastic sheets in a ring binder. He can turn the pages with his gripping gloves. The tray table has been tipped up slightly which makes turning the pages easier. After these photos is a copy of his letter just dictated to me over the phone from the hospital to my flat. He is keeping in pretty good spirits.

Progress, even if still fuzzy

Dear friends, family and general loved ones all,

I understand that Airasa and Linda continue to provide updates for you lot, but I rarely see them, so I may very well be telling you things that you already know. If so, just regard such comments as entertainment, as they will be made in my voice rather than theirs.

Last Wednesday past, I had my 'Mini Case Conference', which wasn't all that 'mini' in the event, as representatives of every relevant group concerning my care/situation was there, except for someone from the financial office. Well, maybe that was enough to make it a 'mini' case conference after all!

The gathering went pretty much as expected, as each rep said pretty much what I had been told in previous days at different times. Mr Jamil said that, insofar as my general health goes, I am stable, also implying that my neurological recovery was as it is, and unlikely to change.

Sister Abraham, representing the nurses, reported that my vulnerable skin region was fine, something I had been hearing from her and others quite gratefully and joyfully for the past three or four days. I continue to hear this judgement on my bum and so I continue to feel grateful and joyful. Indeed, last night I was up in my chair for a solid 9 and a half hours. I did feel impelled to speak out that I had been battling vulnerable skin for some time, not entirely sure the source of this impulse, but I think it had something to do with making clear that my fine skin had not been going on for a long time and without a fair amount of effort.

The liaison nurse, as expected, had nothing to say as she is not involved with my transition to the community of Santa Barbara-Goleta. Too bad for her, because if she were so involved, she would have to make a number of trips to my home community to ensure that reintegration was proceeding smoothly.

Vicky, of occupational therapy, reported that I was making progress with brushing my teeth and washing my chest and face. She also reported that I had been working on the computer using the roller ball mouse and hand sticks but that I tire easily so that we had moved to working with voice activated program (Dragon 6.0) and was doing quite well -- better than they had seen in years, in fact. She also mentioned I was doing these things 'with assistance' and believe you me, they all do, especially brushing the teeth and washing my face and chest. She also remarked that I was back up to speed with feeding myself; true, but the time that setting me up and taking me down takes almost as much time as simply feeding me would do. I say this not as a criticism but as an illustration of the curious independence I am developing in that everything I do on my own requires significant assistance.

Even reading the newspaper or a magazine requires, beyond the hoisting me into my chair and positioning me properly, proper placement of a table, putting the newspaper on the table, and putting on my pushing gloves (I use the friction pads to turn the pages). It is true, once I am in my chair, that I could, and have done on a couple of occasions, propel myself to the patients' lounge and onward to a table at which point I can, with some effort, put the reading material on the table and be on my merry reading way. However, I still haven't managed to propel myself completely over the aluminum door strip and once I am done reading, I don't have the ability yet to back up and turn myself around to propel myself out of the patients' lounge back to my bed.

Anyway, Vicky also mentioned that we were working on giving myself a drink, but that it would still require using a straw. I am also working with her on devising a way for me to write/sign my name. Another point she made, which caused Linda to yelp in excitement, "Wow, I didn't realize you were writing your name -- no more X's??" This last is exciting, but 'working on' is the operative term because we are a long ways from my doing so.

Jane, sitting in for Simon, my principal physiotherapist, said they had concluded I had reached the plateau of my physical capabilities and therefore had reduced my time in the gym from 5 to 3 sessions a week. (They wanted to cut me to 2, but I protested that this was too drastic, and said that if they had to cut it that 3 seemed a much more reasonable number.) The reduced time in the gym, in their view, was simply to maintain the level I had reached. I said, "I strongly disagree," explaining, as best I could in a non-provocative way, that I had been doing a number of different things before I had the skin problem cycle, with which I felt I was making progress and could continue to make progress if I could continue to do them.

Lastly, the issue of repatriation was discussed. In a nutshell, we reached consensus that it was in US government's hands. Where things stand today is that the embassy person handling this matter is going to try to persuade my original commercial carrier (KLM/Northwest Airlines) to make accommodation for my return and, if they are not agreeable, to proceed down the list of airlines until she finds one who will. Engaging an Air Ambulance is too expensive so I suppose it's conceivable that I would be in England indefinitely, in the unlikely event that no airline would be willing to cooperate with the Feds.

So, we don't know when I'll be returning, but it's highly unlikely to be sooner than two weeks for a number of reasons. For purposes of the documentary film Linda has written you about, it would be good for this process to take two or three months! For myself, I can only say that I am both anxious to get home and scared sh*tl*ss about the process, while also feeling quite gloomy about living in England despite the presence here of the most precious person in my life and having the opportunity to have frequent personal contact with her, rather than every year or two.

As far as my medical state goes, the staphlophorous infection on my leg is healed and the dry patches on my face and arms are sufficiently so that I am no longer treating them. I still am treating some dry skin on my front shoulders and using another cream to help reduce the pain in my shoulders. The excitement about my good skin in that vulnerable area goes beyond being able to sit up for an extended period of time; I am also able to lie on my back when I am in bed, for up to six hours during sleep time. For at least two months, I have been sentenced to being just on one side or the other when in bed, which treatment for my unfine skin I'm sure thrashed my shoulders a bit.

Otherwise I continue to be healthy, eating tiresome English hospital food, struggling through my therapies, chatting with a variety of patients and nurses, and doing my best when I am in bed to nurture my mental health through listening to music or watching baseball games or movies, using my headphones in both cases, as a way to battle the incessant ambient noise. (Even in the middle of the night, when we are supposedly all sleeping peacefully, the noise never lets up, however diminished it is compared to the day; I doubt I get any more than 3 hours of truly uninterrupted sleep at any time or more than two such stretches at night.)

Linda told me last night that she had predicted, when she moved to England nearly a quarter of a century ago, that England was going to be like America in 20 years. Certainly with the terrorist outbreaks of recent weeks and the uproar over increased drinking hours and binge drinking -- to mention only two subjects -- I can well appreciate the validity of her prophecy. Although it seems more the result of panic and the determination to be doing something about the terror threat, than seizing a golden opportunity to implement long-desired repressive measures, as was the case in America, Blair's torrent of initiatives to combat Islamic extremism, is rushing down the same authoritarian (a column in the 'New Statesman' - a British magazine - used the term fascistic) road on which the US has gone quite a ways. It has also been quite upsetting to learn that the quiet British occupation of southern Iraq is simply the result of the Brits reaching an unspoken accommodation with the Shia religious hardliners, that they won't press the question of equal rights/true democracy, if they don't attack British forces.

The news otherwise is very much what one would expect in the US -- lots of crime stories and scandals. My favorite recent scandal concerns a corporate executive in his early 60s, who went to hospital for a triple heart bypass operation and had the unexpected pleasure of all three of his wives showing up at his bedside at the same time. Haven't seen a follow up story yet, but it appears that he's resolved the situation by going to the police and pleading guilty to two counts of bigamy and instituting divorce proceedings for his last two wives, whom he had married in the last few years. He decided not to divorce his first wife, although they had been separated for many years, out of compassion for the trauma it would cause her (they have two, possibly three, children).

Dinnertime is fast approaching (well, I guess I should say 'tea time') so I'll close with the good news that it's highly likely that Airasa, Ian and I will have a day out together in Leeds on the 21st touring The Royal Armouries. Presently, they are having a wonderful time in Ireland (Donaghadee, Newcastle, Enniskillen, Donegal, and back to Donaghadee on the way home). I'm so glad that they will be able to enjoy their holiday and return to some time with me before I have to catch a flight.

I know from the various communications you all are having adventures and challenges of your own and I just want to reiterate again, before I say farewell, how important to my recovery all the things you are doing for me, however small it might seem to any one of you.

Fare thee all well.
Love
Me

After the Case Conference

Dear All,

It was a very good Case Conference on Graham. He is at a point where he can be safely moved to California. They say he just has to keep improving his abilities that he has and they now believe he won't get anything new -- like use of his hands. He is learning to use a voice activated computer, which is really good. He is also able to wash his face, kind of, if sitting up and given a wet cloth.

It is hard to understand the degree of helplessness that Graham has. When he is lying down, he is only able to hit a large button and has to have everything done for him. When he is sitting up, however, once set up for a task, he is able to do a few things for himself. He can operate a special TV/Video control panel. He can use a computer, albeit slow and difficult. He can wash his face. He can brush his teeth. He can feed himself. He can turn pages if they are the right sort of pages. But he cannot pick anything up, so can't have a drink without help. He can't set up any of the stuff he needs to do things.

Therefore it is clear that he is going to need regular, frequent interventions every day to help him through each day. A Care Home will be the best place for him to go into once he has been at the medical facility for a while being assessed by the California medical teams.

We were told that the Santa Barbara Rehabilitation Facility there is ready to take Graham into a bed there. What is going to slow things down a bit is organising his flight home. He must travel lying down and be turned every 3 hours -- so they will need to alter a section of the plane to accommodate his bed. He will need at least one if not two medical people to accompany him. The US Embassy has to arrange this with an airline and this will take a little while. I am going to get his ticket that he didn't use later today and then report to the Embassy what flight he was going to take and they will try to arrange something with the same airline. As Graham does not have funds (nor travel insurance) to cover this, it is going to have to be paid for by the Embassy. So he won't be travelling in an Air Ambulance that costs thousands and thousands of dollars.

I have spoken with Annie about the film again and if Graham goes back to California too soon/quickly, it is unlikely that the documentary can be made. Things don't work quite that fast for it to be so soon. The doctors and medical staff here were very excited about the possibility of the film as they feel that when people like Christopher Reeves gets all the publicity and it is about stem cells and walking again and expensive treatments, it makes people in Graham's condition rather disappear from view. Perhaps a film will be made retrospectively because it is a very good idea. Anyway don't get your hair done and make up on yet!!

While Airasa and Ian are away, I will be seeing Graham more often and also we plan to do another email from him by dictation. So hopefully the next email you get will be from him.

Naturally his move back to California will offer new challenges to everyone. Graham, in particular, who has been in the same care facility here for over 6 months and in hospital for over 7 months, will find the whole thing very difficult in so many ways. Your continuing support, especially once he arrives there, will be vital to his emotional health. We have managed to visit him most days, and if not visit, then a phone call. Every contact is so important.

It was good to find out that he is doing a lot considering his condition. It was a bit disheartening to hear that they don't think there will be any more improvement in getting back parts of his body, especially his hands. However, I refuse to give up hope and I know there are many of you who will keep on hoping and wishing and praying for his continued improvement.

Please do let me have your thoughts for Graham over the next few days and I will put them into the new email book we have devised so that he can actually read them himself.

Kind regards to you all,
Linda

Brief update

Dear All,

I am going to a mini case conference on Graham this morning and will report on that to you later on. I know that things are moving along slowly but surely towards his return. Airasa and Ian are away for 10 days so I will be seeing Graham a bit more often. Send any emails or messages through me for the time being.

The main topic of this email is to tell you about something that is being discussed here at the moment. I met someone who is a freelance TV documentary director. When she heard about Graham's fall and subsequent actitivities to recover and now plans to move back to the States, she said she would like to try and get someone to sponsor her making a film of this. It would be about his 'spiritual and physical journey', and would include filming at Pinderfields and then his return to California and settling into a routine there. This is still in the talk stage, so don't get too excited about it yet! But it is a definite maybe!

Graham has given his permission to pursue the idea. Annie (the director) has had a preliminary discussion with a preliminary person. From what I can gather, it would probably end up being about an hour program on either BBC or Channel 4 here (and possibly open for showing in the States, of course). It would include interviews of various people involved in Graham's recovery and also film footage of his being here in Pinderfields, the trip to the States, and his settling into California with his friends and family there. I can't tell you any more than that as it is in the Very Early Planning Stages.
However, Annie and I thought it would be a good idea to open the idea out to everyone who has shown an interest in Graham's situation -- that's YOU ALL! She has already exchanged emails with Pastor Steve, who has been here and seen Graham's condition and situaiton.

I would also like to add again that when Graham returns to the States, he will have to have professional help to care for him -- none of you will be able to do the general physical things that need to be done -- like his physical caretaking, dressing, bathing, his hoisting in and out of bed, and all of that stuff. He will probably be best situated in a Care Home of some sort where there is 24 hour help available once he has been in the medical facility for a while.

What you will be able to do for him is visit him. Here we have had mostly Airasa and me and Ian to visit him. When he returns there he has all of you and there are 47 on this mailing list alone and presumably people in the Church Family who are not on email but get updates at Church. With so many of you, a rota could be set up whereby each of you could visit him say once every 2 months and he would never run out of visitors (assuming the Church had another 13 people). Of course some of you don't live in Santa Barbara, but I think you get the gist of what I am saying.

A visit simply entails talking with him, having a cuppa, perhaps a roll outside or into another room to sit and chat. We write post cards (as you know), and read him emails from all of you. If you want to take him out once in a while, that would be great of course. We all really enjoyed the outing to the Sculpture Park. But we had to have a special wheelchair taxi to take us there and back and had to go somewhere that was wheelchair accessible. You have seen the photos so you know a bit of what it was like. If you happen to be around when he is eating you might give him a little help if needed, though once set up he pretty much feeds himself most of his food. He needs to have a glass held for him to drink, of course. But you will see that it is about being his friend and having a social visit for the most part and giving him a drink or whatever as part of the visit.

I know he is really looking forward to being back in California for the weather and especially I think for the food -- not to mention being able to reconnect in person with all of you who have been so kind to write to him and send cards and presents and so forth. But of course he is also apprehensive about leaving what he knows here and going to the unknown there. It will be a big change.

I would just like to send a huge thank you to the crew who are busy emptying out his apartment. We know what a big job that is, and of course you will be re-imbursed for any expenses. Just keep track and let airasa know the costs, please.

OK, I won't go on now, but will let you know what is said at the case conference. I will be mentioning the possible filming at that today as well, so that people can be thinking about whether they would be willing to be in the film. Please give it some thought as well.

If you have any queries about anything, please don't hesitate to ask.

Kind regards to all,
Linda