Graham prepares to feed himself 

Graham feeds himself 

Spoon holder on Graham's hand

Halo marks are disappearing! 

Graham in collar no band-aids 

Graham and friend watching Easter service video 

Photos

Hello all,

I'll have the photos posted today. We've been busy with tie-dying tee shirts for the Girl Scout Olympics (we're Spain this year, Ole!) my new nephew's baptism, and preparing for Kathryn’s first communion this Saturday. I have given Linda all rights to update and post to the blog. I'll find how to get her access to post pictures also. I'm glad Linda can post updates on Graham and Airasa's messages. It really helps me in my busy family schedule! Thanks for your patience.

SITP!
Sue

Graham with band-aids 

Can't do photos here

Just to remind you, I can't put the photos here, but have sent them out with the email earlier this week. Graham is doing great. I sent out some more photos this morning showing him feeding himself. It is a real challenge, but he is doing remarkably well. Graham's Mother and Cousin will be arriving here on the 6th of May for a 2 week visit. I am sure that will cheer him up tremendously. The phone calls always bring a smile to his face!

Airasa's latest

Dear all,

Just a quick note about phone numbers. Although my dad has a bed phone, it rings very quietly and he can't answer it himself. If you try to call it, please let it ring a long time! He often has headphones on and so it is possible he won't hear it for that reaon either. I suggest that if you can't reach him on it, try the ward phone number and then he can get the nurses to set him up with his bed phone, you can call that phone and he's be ready. Then you can talk at leisure. Ian and I bought him an earpiece that fit ove his ear with a microphone, so it doesn't require anyone to hold the phone for him. Nifty huh?
So the phone numbers are:

Ward phone: (011 44) 1924 214 049 (UK 01924 214 049)
Bed Phone: (011 44) 1924 214 051 (UK 01924 214 051)

So, try the bed phone, but if you get no reply, go for the ward phone and transfer!
Hope you're all well. School is busy, busy, busy and so I am too!
Love
Airasa

Wednesday, April 20, 2005

Dear ones all,

As you know, the ceremonial crown and bullet-proof vest have been removed, having been replaced by a neck collar or two. Mr Jamil, the ward’s consultant who is in Brazil for a conference and some undoubted touristing (no conference lasts three weeks!), prefers the Aspen collar while Mr Raza, who is overseeing the ward while Jamil is away, prefers the Philadelphia version. I’ve tried both and I prefer having no collar at all! However, it seems that option is not open at present and I may have to endure one or the other at one time or another for up to six weeks. Aside from the feeling constricted on my throat, each one generates obsessive itching one place or another so that I am tormented by trying to move my head in such a way to scratch the spot(s) in question while raging at myself “stop, Graham, stop!!”

You’ve heard a lot about my rehabilitation from me, Linda, and Airasa so I will limit myself in this communiqué to saying things proceed as slowly as usual. The basic problem with the physiotherapy is that my functioning muscles are so weak and that I tire easily. I am regularly admonished (calmly) that the more I work, the stronger I’ll get. Doing my best to be a good, trusting, and faithful patient, I keep plugging away a little bit each day beyond what I feel I am up to doing.

Occupational therapy is going much better. Although not a pretty sight, I have reached the point where I can largely feed myself as long as I have the assurance of someone with me who will rescue me at some critical moment, usually at the beginning when I am trying to scoop up some food in my modified spoon (no clue yet about working with a fork). A bit more exciting is that I have gotten rather good at maneuvering the computer cursor in small spaces and removing my hand to left click without moving the cursor at the same time. I can’t type, but talk about voice activated programs increases; the ward uses Dragon. Mondays and Wednesdays at present are my computer days, so I practice my hand skills by checking out various newspapers online, such as LAT and NYT, and various topics. For example, now that we have Pope Benedict XVI, I Googled Benedict XV and learned that he was pope during WWI, and issued a peace manifesto that Woodrow Wilson rejected at the time but largely incorporated after the war in his Versailles positions.

As far as the new Pope goes, he strikes me as a transitional figure, in that his role as John Paul II’s doctrinal enforcer honors and carries on his legacy but his age almost certainly ensures a papacy of less than ten years. Even so, I think the selection was a mistake because the Church, while unlikely to select anyone close to being liberal, needs to address the problems of the centers of the church today, which lie in Africa and South America, not Europe (St. Benedict is the patron saint of Europe, a pretty strong indication of where Ratzinger wants to focus his energies).

The election here mercifully draws to a swift close as the Brit politicians’ campaigns are a spittin’ image of America’s despite their parties’ issuance of lengthy manifestos whose points are attacked and defended with much vigor. The other big issue, although it will be in the background for a while now that an investigative commission has been appointed, is the collapse of MG Rover, the last British car maker. Clearly, both the Phoenix Group and the Chinese looted the company, but it remains to be seen if the British robbers did anything prosecutable. The Chinese, of course, are having a great laugh over those gullible Westerners.

One thing I haven’t talked about regarding my stay in Pinders is how noisy the ward is through much of the day and well into the evening. When I get in bed, usually by 8 p.m., I seek refuge under the headphones of my CD player. Even if I could use my hands to read, I suspect I would do the same. It is not uncommon for there to be 2, 3, or even 5 televisions going on at the same time. For the dead time during the day, I am finding myself watching some telly, doing my best anthropologically – you know, when among the Bugga Bugga, watch what the Bugga Bugga watch! Among the many differences between UK and US television programming, the one that strikes me strongest is the plethora of property shows on the telly here – Ian calls them “property porn”. For example, one show takes a couple looking for a new home and shows them three places. If they guess the price of their choice within 500 pounds they get the keys to the house. It is not hard to understand how infrequently the couple wins, given that the homes range in price from 70,000 to 150,000 pounds. Another difference is that the Brits bunch up their ads more than we do so that, while there are fewer interruptions, the ad breaks seem longer (editor’s note: long enough to boil the kettle and make a cuppa!). A last curiosity I’ll mention is that the television guides’ listings are by channel and not by time of day. OK, another difference: the starting/stopping times of the programming is often not on the hour or half hour (e.g., 8:40 or 9:05)!

Dinner soon, so I’ll close by saying that I continue to be overwhelmed by everyone’s communications, support, prayers, and love. The surprise package from “GPC Friends” was a real mind-blower. Have bits of the story, but would appreciate a GPC friend giving me the full skinny (editorial query: what is the origin of ‘skinny’?).

Now it really is time to go.

As usual, all my love,
Graham

PS Photos show Graham watching the Easter service sent on video. There is no need to change the format as his little TV/video combo plays both UK and US videos.

Latest news halo off; collar on

Dear all,

I went to see Graham yesterday and took the attached photos to send to you. I am unable to upload photos to the blog so you will just have to cope with them being attached to your emails.

It is good to see Graham without all the metal work and that uncomfortable jacket on holding the halo in place. Towards the end of the 3 months he was quite uneasy in the whole contraption because he has lost some weight and so things were no longer fitting snugly. Now he just has this collar he has to wear, and some square bandaids over the holes in his head where the halo had been fastened.

The new collar is one of two types. His own consultant, who is on holiday for 3 weeks, prefers the collar he currently has on. However, the consultant who is covering during the absence prefers a different type that he has ordered for Graham to try out on Monday. The niggle with the one he has on is how it fits tightly on his chin and makes his beard a bit itchy. He says he spent the first night opening and closing his mouth/jaw trying to get it to move away from his chin a bit. Of course it is all new sensations compared to the metalwork and jacket. It takes time to adjust to any new feelings I think.

When I arrived yesterday there was the package for him that had been mysteriously delivered without a postmark that came from his church family. There were 11 cards, photos, a book gift, a video that may (or may not) have to be transmuted to British video playing format, and some newspapers with articles close to Graham's interests (books, sports) [and a cheque to be changed to English money for him which I will do this week]. He was very touched by the package and came to tears while I read the cards to him and showed the photos. He is really looking forward to being back in Sunny (warm) California and being pampered by all you lovely people!

He now has an earpiece telephone that will hopefully be able to be used, though his frustration at not actually being able to put it on himself, or use it without help, was obviously upsetting him yesterday. He wants so desperately to be able to use his hands and is incredibly irritated that he can't do anything with them. It is quite amazing how much he has been able to hold back on voicing his frustrations, if you ask me. When you do phone, it might take a while before the gizmo is attached to his ear. I believe he has a separate phone number that is only his, however, so if you are able to wait until someone answers it, that would be wonderful. [Airasa could you send the phone number as I don't seem to have it!] We had talked about a code whereby you would phone and let it ring and then hang up and phone back in a minute or two. We don't know what will be the best way forward. The nurses are busy and some things are not as urgent as others -- depending on the time of day and what they are doing. We missed a phone call yesterday as we had gone to sit in the day lounge to open the package where it was quieter, but they left a note saying Craig (I think) had phoned. At least Graham is able to get around a bit more.

I know he wants a miracle cure (don't we all!?), but it is probably not going to happen like that. When he got the halo off he was actually hoping the collar would only be on for a day. This was because another patient, who recently got halo off and collar on was told it would be 6 weeks but had the collar off in a day. As it has already been more than a day, I think his hopes have been dashed and the frustration does get overwhelming for him sometimes.

The OT and PT folks are still working with him and he will be going to church this morning -- he asked that they have him ready by 9 a.m. while I was visiting him -- and he does get comfort from his regular visits from the chaplain. I think he is just still adjusting to how terribly slow the whole process is and wishes it would be faster.

However, when Dylan saw what progress he had made, having not seen him for 8+ weeks, it was obviously a positive moment for Graham as well.

We heard from Gale (cousin) that he has now got his passport and is coming to visit Graham sometime soon and that was very cheering as well. I am sure he will perk up to see someone besides the same old same olds.

Oh, he had his first shower yesterday and found that to be wonderful, though too short. They washed his hair twice (!) and that was also wonderful after 3 months without much washing possible. I brushed his hair for a few minutes and that really felt good to him as well. I also washed his face which they do rather quickly and without much umph. I did a thorough job with his eyebrows, ears, beard and forehead and that made him feel better. It must be so hard to be unable to have some sort of good scrub.

So there you are, folks. The latest on Graham. He is so touched by all of the love you are pouring out to him; please don't stop. I know what he is doing is extremely difficult and he is doing his best to stay calm, take it one day at a time, let go and let God, and all that. But it would try anyone's patience to be patient in this situation. He is doing remarkably well.

Keep those cards and letters coming!
Kind regards,
Linda

Ian and Dylan with Graham and TV gizmo 

Dylan and Ian with Graham 

Halo is off!

Hello all,

Just a quick update -- I went to see Graham on Wednesday with Dylan and we found Ian there already. They were sitting in the day room. Dylan had not seen Graham since he left LGI so that was about 8 weeks and he remarked that the changes in his condition are clear to see. He had not seen Graham sitting up in a wheelchair so that was a huge difference. Also, when Graham talks now he is quite animated with his arms and we are all pleased to see this. It was good to see Graham's progress through Dylan's eyes. I am attaching two photos from Wednesday for you to see. One shows them in the day room, and the other is at his bedside.

Airasa phoned me last night after visiting her dad and says his halo is off as of yesterday afternoon. He now has a collar on but no halo, no metal, no jacket. I will see him on Saturday evening and take a few photos to send along with his new look. Airasa says he is feeling very chipper and it is great to be able to move his head a bit. I believe progress will be swifter now.

I am taking the laptop in on Saturday evening and he will hopefully have enough energy to write his own update then. If not, I will let you know how things are.

I am looking forward to seeing him without all his 'metalwork'.

Keep those cards and letters coming folks!!

Love and peace,
Linda

View of Evening Post on bed and monitor on wheel chair 

Close up of hands and smiley face 

Side view 

Another view of bed and watching TV 

View of bed 

Graham with another view 

Graham with Happy face device 

From Graham to You

Dear ones all,

Airasa’s right, I should send an update of my own, rather than relying on her or Linda to keep you all posted. But frankly, I’m weary of discussing what condition my condition is in…largely because it’s proceeding slowly and, right now, I’m feeling both frightened and despondent about it. I work so hard, but things proceed so slowly. In addition, I’m finding I’m having to do a lot of “managing” (manipulating) the staff and even the occasional fellow ward mates to manage the long hours of every day. This is largely the result of my not being able to propel myself in my chair, feed myself unassisted, brush my teeth, and probably most of all the many occasions I ask for CD changes. Music has become my essential/desperate refuge from the ward noise – mostly televisions – and the long hours of inactivity/too much time to think, as I can’t read with my helpless hands, the nursing staff doesn’t have the time to read to me, and when I have visitors I want to visit.

Airasa is also right in that I don’t have to limit my “updates” to what condition my condition is in! Right now, the telly is showing the blessing at St. George’s Chapel in Windsor Castle. The country as a whole, naturally, is far more anxiously awaiting the start of the Grand National steeplechase, the most challenging horserace in the world. The Brits know how to handle competing obsessions in that the blessing started at 2:30 and the steeplechase starts at 4:10. Of course, for those no doubt many millions of the kingdom who don’t give a farthing for royal doings – this one in particular – there is, as there is for the Triple Crown plenty of pre-race coverage. The Queen herself is very ‘fond’ of the Grand National so the race had to be put back an extra time (it was due to start at 3:45) so that she can finish with the wedding folderol and still get to see the race!

The other big news over here (the Pope’s funeral is yesterday’s news, but I’m sure the selection of a new one will have its couple of days of big news) is the May 5th General Election. Airasa is right, yet again, in her assessment of Tony Blair as a caricature of himself and the Conservative Party is not as reactionary as our Republicans, but the Tories are doing their best to catch up. I politick whenever I can for the Liberal Democrats. Unfortunately, the Brits don’t have the luxury of voting for Prime Minister directly. As you know, the Prime Minister is determined by the party with the most MPs, and there are too many Labourites who are social(ist) democrats in their heart of hearts so the choice isn’t between Blair, Howard, and Kennedy, but between your local MP candidates. Still, I think it would do the Brits good to have a sudden upsurge in Lib Dem representation in Parliament. After all, the (merged) party has held power not all that long ago in the British history scheme of things a good 2000 years (after all with all the Roman ruins around the island). At least the British are blessed with having a six-week campaign rather than the seemingly endless American one (editor’s note: besides which, Brits ‘stand’ for election and Americans ‘run’). They are also blessed by having a Shadow Cabinet so they don’t have to put up with the inaugural transitional hoo-hah. Frankly, I think both countries would benefit from adopting the Australian system, but I will leave it to you excellent researchers (and not just at Clio) to determine the details of the Aussies’ approach if you are not already familiar with it.

I’m running out of breath so I’ll close with the thought that, whenever someone praises me about my courage, faith, optimism, endurance, etc. regarding my coping with “the new (helpless) Graham”, I think to myself “boy howdy, however did I manage to get him/her so fooled!?!?!”

Still it’s not only nice to hear, but it does help.

Peace, love, and all best wishes,
Graham

Photos to come!

I have seen Graham this evening and he has had his CT scan but the results will not be available until Monday so we are waiting now. I took a couple of photos I will upload later on. It has been exactly 3 months since his accident. He has definitely improved over time, but it seems so slow to him. Thanks again to all of you for writing and phoning. I will take the laptop on Saturday and he can write his own update, but I guess we are all waiting for the results of the scan as it will tell whether he can have the halo removed or not