Partway There

Dear friends and family of Graham,

I will do another update now, partway through my stay here with him. Things seem to go up and down quite a lot but I am hoping we will have equilibrium before I leave.

I prefer not to focus on any negative aspects of the settling in, though it is hard not to mention them in passing! Instead I would like to focus on the future for Graham.Although this care facility was not exactly prepared for the arrival of a quadriplegic, they do have some experience with one or two and they are on a very steep learning curve, along with Graham. We are having to teach them a lot. However, yesterday I pointed out that had Graham stayed in England he would have not been allowed to continue staying in Pinderfields. He would have slowly been introduced into a new living situation hour by hour, day by day, weekend by weekend as people learned to help him and he learned to help himself in a new situation. Moving directly from an acute spinal injury unit to a care home with no slow introduction and help for those who are helping him has been a big shock to everyone! But we persevere. Graham is doing his best to each every new member of staff who is caring for him (and that seems to be every 8 hours this first week -- hopefully then the same people will rotate around again to care for him having done so once already). He has to teach them how to place him in the bed with all his pillows at the right places so that his body is in the optimum position for skin vulnerability and pressure sore alleviation. He has been showing the OT person, Steve, how he learned to eat with all the gear we brought with us. He still does not have a wheelchair that fits him right -- this one is 18" by 16" and he needs 18" by 18" so he has a lap into which he can place water bottle and newspaper, for example. But that will come in due course. He has had to discuss how often he is turned in bed to save his skin but allow him to sleep at night. He has been having discussions about what food he does nad does not like and the dietician is doing her best to get the kitchen to comply.

This all takes time and energy and patience. As the old saying goes, patients must have patience. However, we have not yet been here even a week, having arrived late Wednesday afternoon and this being early Tuesday morning. There is a lot to this resettlement but I feel we have had some really good news in the past day or so and will share that with you.

As I may have mentioned, the staff here are working towards getting Graham to be independent enough to live in his own place with a carer. yesterday we got the news that the housing authority has granted him permission to get a two bedroom apartment. As Graham pays the same whether one or two bedroom, this is really excellent news. We do have to find the place for him to live, but that will happen in due course. We must, however, hang on to the apartment he currently has as he will have only 120 days from the start of his 30 day notice to leave this apartment to move to a new one. So it looks like we will hold on to this place for the foreseeable future as apartment hunting begins. This was new information as we were under the impression he had to move out soon. I know how hard people have worked to decant his stuff to the storage facility but this has not been in vain. I now believe he will get his own place with a live in carer and be able to have many of his treasures right in his own place once again. For the moment they are safer where they are and I must commend the movers and shakers again for their diligence and due care in moving these things into the space. I will be viewing that later today I believe. So we will leave the furniture in his current apartment so that it is not totally unoccupied and start the search for a 2 bedroom place with wide doors for wheelchair access. It might be that the bathroom will have to be adapted into a 'wet room' so that he can have showers without problem, but all of this is very very positive and we all need to be thinking in this direction now.

It is important that Graham have a positive attitude which is not easy when every morning he wakes up to be reminded he is paralysed! But today we are meeting with a very knowledgeable fellow named Jeff Bass who is a quadriplegic himself and who lives by himself, drives a car and works. What better role model could there be for Graham??

I have to praise all his work mates and church family and other friends as they are rallying around to take on their own new journeys as his friend in person. All the letters and cards and presents sent to Graham far away will now turn to visits and encouragement close up. I can tell, even when Graham is tired from everything going on around as we settle him into his new situation, every time one of his friends shows up his face lights up and he becomes animated in his talking. Each of you has a gift to offer Graham, whether it is sitting with him watching sports events, or writing post cards to those who don't live here, or having a bite to eat, or reading something to him, or bringing him treats -- there are so many little ways that lift his spirits and each of his visitors will find how best they can interact with Graham.

I would like to thank the ABC-Clio folks for their continuing kindness and generosity to Graham. Not only have many of them visited him, there has also been the gift of a television with built in video AND DVD player so that Graham will be able to have some entertainment to help him through the difficult moments in his life. At their request, I will be visiting ABC Clio on Thursday when we will talk about how best Graham can be helped in his recovery. I truly see him returning to some kind of work, probably part time, but something to make him feel he is contributing something worthwhile to the world. Whether he could return to his old work would depend on the right sort of technological help, but I certainly can see him being able to write using voice activated software and we all agree that Graham has a brilliant mind that ought to be put to good use somehow. He did say to me when he was still at Pinderfields that he does not want to spend the rest of his life being entertained until he dies. We can all, therefore, encourage him to aim high and find a way to help him achieve a productive and useful life.

I went to church on Sunday and was given time to talk about Graham during the service and thank them for their support over these months. I believe his church family will be very important in his recovery as it will probably be going to church once a week that will start to get him out of the care facility and back into the community. Many of the church folks have been so helpful during my short stay so far, and I know that they, like Clioland, are making plans to see to it that Graham has at least one visitor a day, every day, for the coming months. It might be more than one a day, but it is really important to Graham's mental health that he sees a friendly face from outside every day.

We are blessed that his roommate is lucid and helpful. Many of the people at the care home have Alzheimers and therefore are not folks Graham will be able to talk to. But his room mate Jim has had a fascinating life and they can talk politics and world events and so forth. We are also blessed that all the staff in the facility are doing their very best to learn how to help Graham and to be there when they are needed. It is a huge adjustment to go directly from an acute specialised facility into a long-term chronic care facility that does not specialise in his type of injury or condition. But their kindness shines through and their willingness to learn is obvious. Graham has been remarkably patient in teaching each newcomer to the best way to help him, and hopefully he will soon let go of the phrase 'At Pinders it was done this way..." because, after all, he would not have been able to stay there in any case even if he had been British. As the days turn into weeks and the weeks into months, the aim is now to focus Graham on getting all the right abilities to live away from a care home and in his own home. It is not going to happen overnight -- even finding the right apartment will take time -- but I really believe it will happen one day. I still hold out hope that his abilities will improve, that he can still get the use of his hands back, that his body will find a way to repair his spinal cord a little bit more to provide that ability.

For myself, I have been blessed to be able to share some of Graham's journey and to give him the care and love that he so needs in this situation. I have seen the same light of care and love in his visitors and am so grateful that you are all here.

I know that even if you live far away you will be important in Graham's continuing recovery. We hope to have a phone in his room with his own line so you can phone him eventually without going through the care home. There are specially adapted phones and he can use a speaker phone and perhaps just a big button to hit to answer and hang up and then be able to hear you in the room and speak into the room. It appears that, while the insurance company will be able to get him a special bed that will automatically keep his body moving to prevent any pressure sores, as well as one if not two wheelchairs (one manual, one powered), they do not consider a computer medically necessary so one of my hopes is that during the next couple of days we can find the right computer with the right specs to take the voice software and get that into his possession so he can continue to improve his abilities with that. I believe this will offer him a personal life line to all of you, being able to write his own emails and keep in touch rather than have someone write updates for him. He will also be able to start writing other types of things in hope that some day he might do productive paid work and not be dependent on benefits to support him.

In the meantime, however, it is a one day at a time process. We are having a bulletin board put onto the wall at the foot of his bed where your cards and letters will soon be filling the now empty space. We will have a mirror installed so he can see his call light is on when he is not facing it (a frustration at the moment) and hopefully get him a better call button as the current one is small and rather insensitive so it takes a bit to get it to work. I have told Graham I will consider returning in a few months and he jumped at the thought -- so I am thinking perhaps there will be a new place to move into and I can come and help him to get settled. However, I do have to go back to England and my life there and so he will have to depend on others to fill in the space I will leave when I fly away this weekend.

I am grateful to everyone who has already helped with his resettlement, and am looking forward to meeting a few more of you in the next few days.

I believe every one of us is taking this journey with Graham in some way. I continue to hope he will improve and find a life that is satisfying and happy for him. He is a young man and hopefully will live for many many more years to come. Thank you all again. I will try to write one more update before I go.

Love and peace
Linda

Back in the USA

Dear All,

I am so glad Airasa sent this email with all your addresses, as it is not so easy for her to update you second hand. I have been inundating Airasa with emails about Graham's progress, but now that I have your emails I can inundate all of you again!!

I have just written a long email to Airasa so won't be quite so long-winded with you all probably. This computer has an ordinary keyboard and I am used to an ergonomic one so it is not quite so fast for me! [ed. note: now that I have finished I see this is as long as all the other emails I have sent -- sorry about that but I seem to get into the flow!]

I will give you a quick progress report here so you can see that he is adjusting though it is slow and will take time to get used to the new routines.It seems like more time has passed than actually has because of all the changes and settling in. I have spent about 5 or 6 hours every day at the BVCC with Graham trying to help him get sorted out and adjust to the new routines. He has been very good and accepting of all these changes, even though at times it is quite scary I think.

The room he is in gives him more space for his things, but the facility iteself does not have the more high tech stuff for rehab (like they don't have a bike for example) and they don't have a computer room so if he is going to use a computer we will have to be inventive in finding space for it in his room. As laptops are pretty small these days, I believe it is all very possible.

Next week hopefully there will be a bulletin board put on the wall at the end of his bed where we can put up cards and photos sent by all you good people. I think we will start afresh rather than put up the cards and photos you sent while he was in England. That way we will also be able to change it more easily using thumb tacks rather than sticking things on the walls. Graham has had many visitors already, and I know that, though he feels a bit overwhelmed, each person adds one more positive step for Graham's recovery. I have met some of them but others have been there at night after I have left. The folks from ABC-Clio, his work mates, have been really kind and generous. Not only have they come to visit they also gave Graham an amazing gift of TV/Video/DVD all in one combination entertainment unit. Graham will make a lot of use of that, to watch baseball and other videos and dvds of films and perhaps even be able to listen to CDs on the dvd player (mine will do that so I assume this one will as well). We have not got it hooked up to any tv stations, as I think he needs either a cable or an antenna to get stations, but I am sure if he wants that we can arrange it soon.

I will be meeting the church folks on Sunday morning and really am looking forward to putting some more faces to names. Marj and Jim have been so wonderful to Susan (the nurse) and myself in giving us not only our own bedrooms to stay in, but feeding us and taking us places. Marj has taken Susan shopping in SB and to Solvang as well as taking both of us out for meals and to the local stores for provisions. Jim was so quick to get the wheelchair from church for Graham to try and has done anything to make our stay here happy. Marj even bought a special lamp for my room so I can read before going to sleep (and when I get up).

Graham's physical condition is really quite good I think. The people at BVCC are very kind and positive and upbeat. They would like to have the aim of getting Graham into his own place eventually, albeit a disabled apartment and with frequent carer help. They also hope he will become able to do something in the way of productive work -- whether he could return to ABC-Clio in a different position performing work he could do with voice activated software or alternatively become a weekly columnist for a magazine using his formidable brilliance to electrify and cajole others to see a different point of view or even eventually to write a book -- we all hope that there will be some useful activity Graham will one day find that will make him feel useful and needed in the world. I will never forget how he told me one day at Pinderfields that he dreaded the idea of simply being entertained until he died. He really wants to do useful, productive work and not be a burden to himself or to others.

The positivity of the BVCC staff is so helpful. When he was told at Pinders that they 'could do no more for him' he read that as he had reached his plateau of existence and now there seems to be a bit more hope that not only will he continue to improve in his abilities, he might even improve in his body. As we have said, 8 months is really a very short time when it comes to spinal cord injuries, and there may be vast improvement for Graham in the future. I was told of one known person with Graham's exact injuries who now drives a car and goes to work! There is always hope!There are still many things for me to facilitate before I leave Santa Barbara next Friday and I will need to enlist the aid of some of you who live here. We will need to empty Graham's apartment finally and then free him to be on the list for a disabled apartment if he is ever going to be able to leave the BVCC then we need a place for him to go. I also have quite a few of his things in suitcases that we brought from England that he does not need with him so those will need to be stored in his storage area. There are the financial responsibilities that he will need help with -- he can decide things but he cannot do things to execute his decisions -- so there will need to be a designated person to help keep his finances on track. Fortunately his clothes will be washed by the BVCC folks so no one will need to take on that job! We are just hoping that things get back to him -- I marked everything clearly with his name and still have to do an inventory of all the stuff he has with him with a member of staff. One of his aides joked, when answering Graham's question about when the things came back from the laundry "two months" but it was a joke!

The staff at the BVCC are really kind and many of them have been asking Graham how best they can help him. The visitors he is getting have cheered him up so much and there are still so many of you who have not yet had a chance to see him. I hope to meet some of you today, it being Saturday. You all will probably need to coordinate your visits a little once the dust settles so that he has a steady rate of visitors rather than 5 showing up at one time! He is still adjusting to the time change and the routine changes -- and there are plenty of routine changes! But eventually I expect he will be sitting up in a chair made to fit his specifications for his body, and be able to sit up for many hours in the day. When visitors are there and he is sitting up, you will see he is really very much himself -- talking away on all the subjects he loves, asking questions of each visitor about their lives, generally being the fascinating guy I met in 1972!!

The California weather will be a cheerful change from dreary old England as well.One day soon I expect he will be able to go on short outings -- perhaps wheeled to the local shopping center where there is apparently a new Mexican cafe that serves yummy food; going to church on a Sunday and seeing his friends there, even being able to give a reading or two; sitting with friends in the garden at the center where birds sing and the sun shines and it is simply a really nice place to be; one day even going to the movies or a baseball game -- who knows? The sky's the limit.

Right then, you all have his address at the BVCC so writing to him there will be the address of choice. You also have his PO Box address if you want to send him anything and I expect Ernie will continue to check that regularly (thanks Ernie).I would love to meet any of you local SB folks -- I intend to visit ABC Clio next week (I will need a lift, fellows!) so I can see all the kind work mates who have written to Graham over these months. I am sorry not to be able to see others who live away from here, but you can always write to me when you feel like it! People here will now need to do some sort of regular updates to Airasa (and me) in England, though phone calls to the center are quickly taken and it is nice to talk on the phone with Graham! But the email lifeline to us in England will continue to be important so hopefully as people visit Graham they will feel free to write updates to the group. No one expect them to be long like mine and in fact there may be a collective sigh of relief from all of you once I stop inundating you with these gargantuan updates. I expect Graham will take that over eventually himself -- he just needs to find someone to take dictation until he gets his software up and running.

It is still early days and there is, I firmly believe, much more improvement possible for Graham. Each of you (and the second level who are not on this list) are important in your own way to this recovery. I also want to add that knowing Graham and seeing how he is handling this very difficult life change is very wonderful to behold. I have often asked myself how I would have managed had it happened to me...and I am very very careful getting in and out of the shower as well as watching my footing in general!

I hope to hear from you all before I go in some fashion for me to read to Graham or to put his emails in his 'Progress File' full of emails he can read to himself once that is all sorted out.

Kind regards to you all as always,
Linda