December 30, 2005

Dear All-

An exhausting two days! The night before last, when we were getting ready for bed, Greg discovered that his stomach was bleeding profusely. We immediately phoned our transnational GP extraordinaire, David Gaskell (a very dear Regent friend in Scotland), who gave us guidance on how to deal with it till morning. It was fine overnight, but when Greg got out of bed in the morning, it became a significant problem again. We phone the hospital and they told us to come in. Greg’s dad braved driving the snowy roads without snow tires (a lack we remedied immediately after leaving the hospital!), and soon we were back on the familiar 6th floor, the friendly nurses greeting us, pleased to see Greg again, though concerned he was back in the hospital. As usual, he got quick and excellent care. And they were quite content for me to remain in the room as they worked on him, which I really appreciated (growing up on a farm has kept me from being squeamish, I guess - that and an abundance of medical friends). The nurses and doctors chatted to me as well as to Greg, explaining what was happening, etc. It turns out Greg hasn’t yet been exceptional enough: not only does he have to have a tumor with exceptionally rare complications - but in addition, his supposedly simple stomach incision goes and develops a rare type of complication with hematoma.

After a few hours in the hospital (with the attending doctor telling Greg that he had been in to see a bit of Greg’s surgery and that it had been hair raising with his brain stem such a mess), Greg made his way very gingerly back to the car (wincing as the general anesthetic wore off)-now supporting a “drain” in his stomach, and carrying a page long list of new prescriptions and materials for our traveling nurse, who now has to dress Greg’s stomach every day for the next week. We shall get to know him well! (He was already scheduled to come every Tuesday to give me my weekly shot.) Greg’s now developing a long list of medical appointments as well. We go back to the hospital on Monday for a checkup on his stomach and also another look at his ear incision, as they weren’t really happy with how it was working either … they’re not sure there is a problem, but not sure there isn’t either. They were pleased (and a bit surprised) that Greg seemed not to have developed and infection or fever though. Small mercies are big ones.

We were all quite exhausted by the end of the day and ready for bed. Unfortunately we woke up to –14 C and no water - frozen pipes … us and, we have since learned, a number of the neighbors too, so the day has been filled with melting snow for washing, carting water from the neighbors house, fixing up the hairdryer to run full time on the pipes, trying to figure out how to solve the problem etc, etc. A visit from the water supply neighbors and their three children was a pleasant respite - amazingly the husband is a friend of two other friends of ours. As the wife is English, everyone could join in on the conversation.

Between journeys to hardware stores and searching for plumbing solutions, Greg had his first physio-kine. The physiotherapist is good - he’s won a number of global awards for work done in Afghanistan. Greg is confident he is in the right hands. But, like the doctors, the physio is blunt: Greg’s balance/equilibrium is pretty good, a bit more work to do on that but not too much. His face is a different story. The physio told Greg that as of today he needed to accept the likelihood that his face will always remain as it is - with one half 100% paralyzed. Anything that might possibly change is an unexpected gift. And so what Greg will be working on is maintaining his face as it is, to keep it from disfiguring further.

The physio pointed out that Greg was already tilting his head too much, already over-accommodating with facial expressions. The danger with this is that over time the facial features start to pull over to the active side of the face, with disfiguring results. Greg is going to have to relearn how to make all his facial expressions, and even how to talk. The physio said it is going to be a long road with a lot of hard work. In addition to continuing hospital appointments, Greg will have physio twice a week, and lots of physio “homework”-a he said tonight no wonder he’s not allowed to go back to work for three months - there’s no time between all the medical appointments.

The news is hard. I think today Greg is processing in a new way the tough realities that stretch before him, and for his parents too, the news is hard to know how to process. Keep us in your thoughts and prayers, they keep us going! Tomorrow we may have our first chance to look at the Internet and email since before the surgery - the neighbors have kindly invited over to do so. It is frustrating still to not have our own access - we are waiting for the initiating papers to arrive in the mail - but I suppose it is not a quick time of the year for administrative business.

It is likely I won’t write tomorrow night, as it is New Year’s Eve. I will the following day though. Ready, both of us, to face the new year with its challenges and its joys, (I am minded suddenly of Madeline L’Engle’s distinction between happiness and joy: sorrow). May the New Year, despite its challenges, bring us all both happiness and joy - and the confidence that the Good shall always win, even if the Battle seems long.

Love,
Kirstin

December 28

Dear All,

Sorry there was no entry last night -- as I was falling asleep I realized that I had forgotten to write. I fell asleep... and woke up this morning to snow! It has snowed here all day, to our delight, and looks like the winters of our youth in Canada. It is incredibly beautiful, silhouetting the walnut groves, manteling the surrounds with softness. Even the indoors somehow look more beautiful when the outdoors are snow laden -- warm, cozy, nestled-in-looking-out.

Our "traveling nurse" came this morning to remove Greg's stitches already. He was a kind and funny gentleman, in his late sixties, who likes to remind us that he is past retirement age... but enjoys his job too much to quit. He first came yesterday to give me my shot: at last, the new treatment has begun. Two to four weeks, we are told, for it to start making a difference. How we both hope it will work! (A side note here: one of the side effects of this drug is that my immune system will have greatly lowered defences, and I am to try to keep well away from those with contagious viruses, even colds and flus, as they will now make me much more sick. So, strange and slightly even rude as it would seem, we now need to ask folks to think twice about coming to visit if they have anything even a little contagious.)

This morning the nurse moved the stitches from both Greg's stomach and his head. The reason he had stitches in his stomach might make the queasiest of you to skip the next sentence- I'll put it in (())) and you can let your eye pass by that bit. ((Stitches: the surgeons use a piece of fat from the patient's stomach to seal the hole -- or, in Greg's case, holes -- that they have made through the bone to get at the brain and tumor. Hence the need for stomach stitches as well, once the piece is removed.)) As those of you who have had stomach surgeries or C-sections know, stitches in the stomach have their own tedium, especially when it comes to coughing or sneezing.These actions tax both Greg's stomach and head.

So today was a big day -- stitches out, tromping around in the snow, and then this afternoon, after a trip into Tullins with Greg's parents, Greg drove home! Only four kms -- but 4 kms a*lot* earlier than expected, and in the snow no less.

Indeed Greg is walking and moving about so normally now that no stranger would guess he had such major surgery only two weeks ago (unless they caught sight of the scar, that is, for it will stay noticeable for sometime yet). We had French/Polish friends who came to visit Greg yesterday and the one who is a doctor told me that she couldn't believe how Greg is already moving about: a strong and determined constitution. He tires easily of course, but when rested he seems -- as far as passive interaction goes... no sports or overly silly antics for a bit yet -- he seems almost back to his old self.

His face still looks a bit different of course, and we realize may always do so. But we still have some hope for more return to what once was. Greg has an appointment with the physio/kiné on Friday, and it will be interesting to hear what he has to say. This morning, however, I noticed that Greg's right eye closed all the way when he fell back asleep. This is the first time I have seen it do this since the operation -- for the first while it only closed a third of the way, if that. As I write now, he lies asleep with his legs across me (pinning me to the sofa!) and again, his eye is completely closed. This seems a good sign, but we are cautious of getting too hopeful. He cannot close it on demand -- only when he is relaxed enough that he is falling asleep. But perhaps this may mean he won't have to wear his "fighter-pilot" eye goggle to bed much longer. He has to put many solutions and gels in his eye throughout the day as well -- if his eye does learn to close on demand again, and have a natural blink reflex, this would no longer be necessary. The doctors would be much happier, as it also means they wouldn't have to worry about sight preservation in his eye. Greg would love to be able to see properly, so right now the protective gels keep everything blurry.

Greg's parents have been great, keeping house for us -- even to the extent of spoiling the cat and the birds. (Wildbirds, of course, which we feed outside our window. We began on Christmas Eve, and within half an hour, robins, pits, and nuthatches had enthusiastically dived in. We will have to ration at some point, or they will eat us out of house and home, but in this cold spell with lots of snow it's easy to give in... and it gives us all pleasure watching them happily dash and dive about.) Frank and Sharon are also being tempted to spoil the horses in the field beside us, with some of our felled apples.

Off to dinner now. We have taught Frank and Sharon how to make Raclette, Tarteflette (regional dishes), and Swedish Coffee Cake. Tonight we feast on Frank's Turkey Pie, preceded by his Escargot!

A demain,

Kirstin

Phone Number

The phone number posted on the left margin of this page is not correct. For those of you who do not have our updated phone number, here it is:

33 476 05 2324

St. Stephen's Day

Dear All,

Happy St. Stephen's Day! We have had a great couple of days for Christmas, and Greg has been going almost non-stop (with a few pauses on the couch). Instead of hearing from me again tonight, Greg's mom, Sharon Johnson, is going to post a guest blog from her perspective. I am sure you will enjoy this-she certainly enjoyed writing it!

Kirstin

****************

After a very late arrival, the night before, we awoke to a frosty french landscape, surrounded by distant mountains. It was the start of a remarkable day-seeing especially what Greg acheived, just one day after his release from the hospital. Being Christmas Eve day, Greg, Frank, and I drove into Tullins to shop for food. Greg sat in the wheelchair while Frank pushed him up and down the hill. After this two hour jaunt, and after a few brief rest stops on the kitchen couch, Greg and Kirstin gave us the tour of their property in the late afternoon-just as the setting sun illuminated the snow tip tops of the Vercours away in the distance. As well as being mindful of Greg walking easily over the uneven ground, I was silently astounded when he jumped up onto a higgledy-piggledy pile of flattened packing boxes. The whole pile looked quite precarious, but Greg held his balance with nary a second glance, it seemed. Later he did admit to thinking twice before he attempting the feat! From that first day home, he's been leaning over, bending, and going up and down the stairs. In fact, on Christmas Evening, he carried down his new keyboard on his own. On Boxing Day, he had his nose on the ground and his butt in the air as he assembled railway tracks from the model train set of some friends we were visiting. These examples show that Greg has regained a very considerable portion of his balancing abilities. No doubt fine tuning remains.
It takes a while to get used to concentrating on the left side of Greg's face to "read" his meaning from his facial clues. On this, our third full day here, the more glaring sense of his right eye has abated somewhat to a more gentle demeanor and we are pretty certain that there has been a small bit of lid movement that we noticed today. These are all very hopeful signs. Both yesterday and today, he has managed to get through each day without any significant rest period, too. I'm sure he will have much to tell you himself before too long. But for now, rest assured that he is making remarkable strides (!!) in his recovery. Each day, however, will bring its own challenges and much remains in the healing and recovery process. He has been sociable, and seems to appreciate the stimulation of our company, while greatly enjoying being in his own home.

Sharon Johnson

Friday, December 23rd

Dear All, friends old and new – I can’t tell you how wonderful it is to be home Together. Greg is now asleep on the kitchen couch, and has it has been a wonderful quiet evening: consuming the gifted pot-roast (pork, apple, fennel – lovely!) and quiet music in the background, chatting with each other and the cat, enjoying so much our new home. It seems almost luxurious to be quietly tidying the counters and the table, washing dishes, sorting the dangerously deep paper piles, as the Tallis Singers soothe us from the stereo, the candle flickers on the table, and Greg’s breaths from the couch go from restful into sleepful – and then occasionally rise up again with a groggy query about one thing or another.

His parents will be here in a couple of hours. Weary, I imagine, but also very keen to see their son. It’s hard to imagine how it will be for them – I’ve watched Greg’s face change so dramatically for the better over the last ten days, but for them his half paralysed face cannot but be difficult – perhaps more difficult for anyone other than Greg himself. Balanced with the fact that he is alive and walking, his facial changes, and sight and hearing changes, are so minimal – but considered on their own, they are pretty darn huge.

The last checkups at the hospital this morning revealed that Greg’s balance was much better than normal. That’s great. The news about his face wasn’t quite so good. Although he is feeling a bit in his eye, which IS good, all of their tests revealed that the whole right side of his face was still 100% paralyzed. That’s not good news, as they hoped by now there would be a little bit of percentage change. Half of Greg’s tongue is still numb too, which still challenges both eating and tasting. If there is absolutely no change in the next few months there may be more surgeries ahead for Greg, just too enable some necessary functions … but we’ll go into that later. Right now we are both tired, but glad to be where we are.

We have rather overwhelmed the lovely folk in the Tullins pharmacy – my meds alone half empty their shelves (about 14 different kinds of medications/pills) – and now I have ordered one so new and expensive it is taking them a few days to even figure out how to get it (yes, I should finally start my new drugs next Wednesday!). Now Greg has emptied the other half of their shelves with about a dozen pills / eye drops / surgical soap/ etc of his own. They definitely know the new “Anglais” in town.

And tomorrow is Christmas Eve. That’s hard to process right now. But when Greg’s parents arrive we’ll start some baking and cooking, and maybe even decorate a little more. And rest in gratefulness. We probably won’t blog for a couple of days, over Christmas day and Eve at least. But we will remain reminded of the incredible Gifts this season intends to remind us of: Life, Love, Grace – the ability to receive, share, and give these.

A Christmas full of these we wish for you. With overwhelming thankfulness –
Kirstin and Greg, Pré Borel, 2005.

Thursday, December 22nd

Well tonight is Greg’s last night at the Hospital! How glad he is to be coming home! After Christmas he will start physio with someone in Grenoble to fine-tune any lingering vertigo. But he’s moving amazingly well and quickly. Being home will be easier for both of us, although it is farther for people to come and visit. But Greg can find new things to entertain himself with, rest well when he’s tired, and then carry on. It’s quicker and easier to go outside for fresh air. And he can rest in multiple places, changing the scenery. It is Home.

Various things reveal he is gaining strength. He has finished another, longer, book. And yesterday as I read a card to him that was written in French, he made me go back over each word until he was completely satisfied with my pronunciation – and then made me conjugate a couple of the verbs! Mr. Taskmaster!

He is making at least two trips to the cafeteria a day now, for drinks, though he is sticking with straws for the moment. And last night he actually went for a bit of walk outside with a friend … a bit of an exploring adventure from the sound of things – and such stimulation is exactly what a person wired like Greg Johnson needs, to keep him from going stir crazy with cabin fever.

The other small adventure yesterday, which I forgot to report, was his eye stitch falling out. It is more common for the lid to actually rip than for the stitches to come undone, we were told, so I’m grateful it was only the stitches. This morning the surgeon decided not to replace it – Greg just needs to remember to keep the eye moist enough with artificial tears, and be extra-ordinarily careful to keep it clean. The surgeon was also pleasantly surprised that, although Greg – as usual – could not blink when they poked around in his eye, he none-the-less, for the first time, had a pull away reflex. The surgeon had not expected this to be returning yet (if, he feared, at all) – so this is a hopeful sign. Any such glimmer helps.

By the way, as regards to physio for his face, Greg was told that there will actually be very little he can do, other than wait, and that he can actually do damage by doing too much. Waiting will be hard, as Greg’s genes are much better at acting than waiting. Over the years with my RA he has gotten a bit better with this most challenging of verbs (“to wait”) – at first it was so hard for him not to be able to do something to make things different. But now it is his own body, not mine, and that is different yet again.

He was in good spirits this evening when guests came to visit, as he talked about his various plans and dreams for the house. And I was sure that he and his “room mate” were both going to get sound head aches as they were both laughing so hard at the other gent’s bed folding up on itself, and at his fears to call the nurse for help as he had already gotten into trouble four times today. I fear he will be a little bored once Greg goes!

I left a very tired Greg tonight – one who was happily off to take his last hospital shower. I think the next few days will be both exciting and tiring … and then after that the demands of reality will set in again. WE have a challenging road ahead of us, but a Good one too – especially with the various company we have been blessed with to help us along.

As of tomorrow I won’t have to wait till so late to scribble these blogs either – so hopefully they will be a bit more cohesive and coherent. We are still waiting to get internet access – at this point it is possible we won’t have it till after Christmas – so I will be continuing to “phone in” my blogs to patient typists, but hopefully it won’t be long before we can type them ourselves, and even read our e-mails. I know Greg will enjoy being able to make some reports himself.

Happily to bed, knowing that tomorrow is my last trip to the hospital, at least until after Christmas! Thanks to the graciousness of others I won’t even have to drive this time.

Love,
Kirstin

Wed. Dec. 21st

Dear All,

I arrived to find a very tired Greg this morning. He had already been out for a long walk, and for a visit with a friend, and he had worn himself out. The physio (kine') has not shown up for the last few days, which has frustrated Greg because he's very keen to be adequately challenging his physical limitations. The doctor tonight frowned when she heard that the physio had not been back, and said that she would try to get that sorted, but then she gave me a big smile which indicated that she was not surprised in the slightest when Greg went on to say that he had found some physio-stairs down near the rheumatology ward and so had been practicing on them! Initiative is something Greg is NOT lacking! As if it was perfectly normal for patients to wander off and do such things, she simply asked Greg how he had found climbing them (they are, I think, three up and three down). Apparently he managed them fine, with no vertigo, which is great. Our stairs at home may present more of a challenge, as there are fifteen of them, and they are rather steep, but I doubt it will be long before Greg will be attempting to conquer them too. Fortunately the house is laid out so that there is no need for Greg to climb the stairs at all -- but that's not likely to stop him! Good thing his parents are coming on the weekend -- it'll probably take all three of us to keep him corralled. But it is great that our property is so flat too, for Greg will be able to walk about outside quite easily.

And it sounds like he'll be home to do so on Friday! We'll know for sure tomorrow (so we've been told), but it sounds like the doctor's think that Greg won't learn anything new in Briancon that he isn't already doing now. So of course, when Greg heard that, he immediately tried to convince the doctor that he might as well leave tomorrow. She smiled at him and said it certainly didn't hurt to ask the surgeon tomorrow, but she doubted he'd allow anything earlier than Friday. I like this doctor because she takes time to read me and my non-verbal responses to her questions of Greg as carefully as she does Greg himself. And she is truly sincere as she wishes us both "Bon Courage."

"Bon Courage" is what Greg needs in his tired times. When he is full of energy and well rested, he is really positive, and often funny too. But when he gets tired, he can get down -- and each day is filled with numerous ups and downs. And he hates, of course, how tired he gets. But his energy will eventually return to normal. That just needs rest, eating well, and patience. It's his face that will require hard work -- and adjustments. It's easy, because the other things are visibly obvious, to forget that Greg's hearing has been cut in half, now that he is fully deaf in one ear. Sometimes a door will creak, or some paper rustle, and he thinks I have said something. Other times he completely misunderstands a word, or even a question. This too will take time as Greg learns to hear better with one ear, and adjusts to how sound has changed for him. But while initiative comes easily, patience is much harder work.

Today was another day filled with such gracious and kind offers of help and care. We are most definitely not alone in this, for which we are both so grateful. I had a wonderful snooze this afternoon on Greg's bed when a group of friends from work came and spirited him off to the cafe. (Needless to say the nurse was a little startled when she came around with the thermometer and found the wrong body in the bed!)

So don't be too discouraged and find Greg down -- and don't be deceived if you visit and find him on a high. I am sure he will vacillate between the two for some time yet. Today he was very happy to see these four friends -- at other times he can't handle having anyone speaking at all. Our dear friend Sharon who has been here helping has learned how to spend hours upon hours helping us from places other than Greg's room, just because additional voices and presences can sometimes simply be too much for him. He was told by a medical friend today a bit more about the fragility of the brain stem cell and just how much of the vital functions it affects. As his was so entirely bent out of shape, and so assaulted, really, by the tumor, it seems a small miracle that Greg is as good as he is. And I think that at sometimes it is easier to know what to do with such awareness than at other times.

In case anyone is wondering about Greg's hospital roommate, he was back from his surgery today, and looking really good! Almost no tubes, and he had a good lunch, and chatted lots with two friends who had come to visit -- all on the first day. So Sharon and I were feeling much better about him this afternoon!

And now I am home early, aiming for a longer night's sleep. This means the evening may stretch out further for Greg though -- may he too have a full and restful sleep. Under the mercy, Kirstin

Tuesday Dec. 20th

This morning I was a little tardy in arriving, as I had been waiting on the post, which was late. It was worth the wait though, for it contained both cards and CDs for Greg. Many of you know that music is one of his greatest loves (indeed his wished for -- and granted -- Christmas gift this year was a small keyboard with which he can sit in bed and play. He, like many, has always regretted giving up piano lessons.) And the CDs some of you have sent in the post have delighted him -- how he loves discovering new music. And now he also can associate friends with that music. He hasn't had a lot of energy to listen to it yet, but he was very keen that I download them onto his laptop immediately, and then bring it in, so that he could listen.

When I arrived, he was fast asleep, but without the bandage that had been wrapped all around his head. So now, if you sit and look at him from the left side, you couldn't even tell a thing had happened. And the right looks pretty good too. All swelling and most bruising is gone. The stitches of the right eye are not dramatic, and his lop-sided smile is even, dare I say it, kind of cute. He has always had such a big smile anyways, that half a smile for him is still more than some folks pull off with a full mouth. He made sure to point out to me too that, now that his right eyebrow doesn't move, his left one raises to soaring heights -- "look, I beat Adrienne even!" he says, proud that he can now raise his eyebrow more dramatically than my sister (eyebrow raising is part of the Jeffrey family lore).

***

Several hours have passed since I wrote the first section of this blog. It is very late, and so I won't write much more tonight, but I did want to write a bit more about Greg's face. On the whole Greg is so positive, but there are things which he needs to mourn, too. And this afternoon was hard for him. He sat in front of the mirror for a very long time, watching the differences between the two sides of his face -- and when his face is animated, they *are* dramatic, for the paralyzed side simply does not move. Also, he pointed out that already the right side is looking a bit different when the full face is relaxed because his wrinkles are already fading on the right side. We belong to that strange group of people who rather like wrinkles in the face, for the character that can be read in them, and it is a bit disturbing for Greg to see them disappearing and the alteration it causes. For a while he was angry that anyone would say he doesn't look much different -- but of course he will notice the difference more than anyone. And as he is often so tired when people visit, they don't see his face as animated as it was today when he was making faces at the mirror. It was a reminder to us both of what the doctor said to us both two days ago: "at first each day will have a big change. But after a while things will slow down, and it will seem like nothing is changing at all. This is when patience, perseverance, and determination will be required." And now to bed -- until tomorrow, Kirstin

Monday, December 19

I arrived this morning to find Greg seated in his chair, looking out his window at the Belledonne Mountain range. They are spectacular anytime they are visible, and this morning was no exception. Few hospitals have views like this one. (If you google Belledonne in the image section you’ll see what I mean). Not a bad sight for tired eyes. Greg had already done the hall several times, and he had also (over the course of last night and this morning) managed to read in its entirety the children’s book, “Wreck of the Zanzibar.” Written by Britain’s children’s laureate Michael Morpugo, and winner of the
Whitbread Award, it’s a great read for those of about eight years old to a hundred and eight (as all good kid’s books are). Our friend Iona Gaskell introduced us to the prolific Morpugo, and we have yet to read a book of his we didn’t like. Some are amazing (ie Butterfly Lion and Kezenki’s Island). The level of reading was apparently perfect right now for Greg and he really enjoyed it. But I was a little stunned: when I had my major surgery a few years back, it was about two weeks before I could read … and as some of you know, reading stories for me is almost easier than breathing! So this for me was especially good news, that Greg was both up for a bit of reading, and actually able to concentrate well enough to enjoy the story. Needless to say I already have a stack of more books in my bag to take in with me tomorrow.

Greg talked a little bit on the phone today with his sister and his parents, and then after resting some more, told me he wanted to go for another walk. First he asked our favourite nurse to fix his head bandage, for it had somehow gotten skewif enough to make him look like a French revolutionary. He joked about this with the nurse and then said: “OK, lets see how long I can stand the cold air!” So sure enough, off we went to the elevators, arm in arm, and descended 6 floors to walk out the exit of the hospital which faces the Belledonnes. We stood in the 0 degree sun – I in my thin shirt, he in his shorts, until I said that gorgeous as it was, I was leaving him out there, and he could come in and find me when he got cold. He decided he’d come in too- I thing he just didn’t want to be first! But three minutes or so as it was, he was so pleased to have breathed in the fresh winter air. We went back up, and he was exhausted, but after a rest he wanted to go down again – this time to the coffee shop.

The time there began humourously enough as the young chap serving me turned out to be the server I had become acquainted with over a year ago – the last time Greg was in the hospital. Needless to say, he was rather surprised to see me again! But then the venture became more difficult, as Greg attempted to drink from a cup for the first time. I am glad we had chosen a corner table, tucked away quietly in the back, so that Greg didn’t have to think about others watching. He was determined to finish that hot chocolate, regardless of how hard or exhausting the effort was … but it really was both. It was more like cycling a mountain as far as the effort required. Quite about spilled down his mouth and the dexterity it was demanding was almost more than he, with a half senseless mouth, could manage. But he soldiered on. He is not going to give in easily, my Greg.

He finished, but I wondered if he still had enough in him to walk back to his room. He did, just. Not long afterwards a friend showed up, which both distracted him from the former ordeal, but also gave him an opportunity to mention it. Greg believes strongly that bottling things up is not healthy or helpful, to anyone, and it was good to hear him be able to say that he had made the effort but that it was hard, and “kind of embarrassing.” To say it was probably as good as making the effort to do it – both were courageous.

Late afternoon a new room-mate arrived. He is very quiet, but we are reminded how fortunate we have been to have so much room to ourselves. The ENT surgeon told us that this new man also has a large tumour, so we felt for him all the more as no one had come in with him to help pass the time quickly.

The ENT surgeon. This was the first conversation with him post surgery. And it was sobering. He emphasized again how very difficult the operation had been: “a bad surprise, your tumour”. They had expected seven to eight hours, but it was closer to thirteen. For some time they even wondered if it was a facial nerve tumour, for by mid-afternoon there was a question as to whether he even had a facial nerve left at all, it had been so obliterated. The MRI had given no indication it would be this bad – but the problems were all things too fine for the MRI to pick up. In the end they found the nerve, and decided it was probably an acoustic neuroma after all. But it was a mess, especially because of how much it had displaced the brain stem cell and adhered to it. He told us that Greg’s facial nerve was also involved, and was compressed a bit, but they are confident that it will recover fairly easily. Not so the others (effecting eye area and mouth area) – as for these, the ENT surgeon said, “for sure, this will not recover completely”. What the doctors do hope, he said, is that the ability of the eye lid to close on its own will return, and that Greg’s mouth will eventually be able to work well enough that he can drink without problem from a cup, and that there will be no facial twitching. This, for the doctors, will be “good function” post-surgery. They do not expect, for example, for much feeling to return to Greg’s eye and mouth area, for him to be able to raise his eye brow, say, or have a symmetric smile.

The thing they want to keep an eye on now, though the days of gravest danger are past, is cerebral spine leakage. Apparently Greg’s tempur bone is more pourous than most peoples, which is why they want to keep alert to this for a few more days. If OK for this period, he should be fine on that front. The stitches that are keeping Greg’s eye partially closed right now, to keep it protected and moist, will be left in for several more weeks (he is given frequent synthetic tears, and at night the eye is capped, to keep it safe). Typically nerves grow a millimeter a day – Greg’s won’t grow that fast the surgeon said (I guess because they’ve been traumatized). He has about two centimeters to grow for the eye area and the surgeon emphasized that it will grow slowly. “Months, many months.” He is “relatively optimistic” that the “hoped for function” will return – but nothing more than that, he was clear.

How does Greg feel about all this? Well, he was worried about the surgeon’s pinched nerve that was causing a limp and, obviously, a lot of pain. And he was tired. But he says he feels positive. I think he is very aware that he is alive, and not paraplegic, thanks to the very hard work of these men. He has been fortified by the courage of some others he knows with similar challenges and so he marches on. Keenly reading and listening to notes of love from you all, keenly aware he is not alone.

He is active enough now that he fears the tedium of the next week in the hospital. He is more able to handle visitors, but often tires quickly. Do not be discouraged by this – just the sight of a familiar smiling face carries him forward a few more hours.

His bizarre sense of humour has not failed … it just bears the stamp of morphine now. And he is eager to get home, to get back to work, to keep trying to figure out how to live Well. I’m pretty proud of him.

Love,
Kirstin

Sunday Evening Dec. 18th

By the time I arrived, Greg had walked the hall four times and managed to get into his own pajamas. He was also off his drip - which means he has to start eating more, even if he doesn't feel like it. He was very ready for his first shower (his head stayed dry of course), and so walked down the hall again with me. I was really impressed that he made it all the way through the shower (of course he was able to sit for it all) and then to walk straight back, because even sitting through a shower takes a lot of energy (speaking as one who usually has to rest after her own!) -- oh, the many daily tasks we take for granted! Greg then slept for a bit, but later was finally able to speak on the phone to his parents. I know this was great for them all. Greg couldn't speak long, and he was exhausted again afterwards (even *listening* to me speak on the phone exhausts him, his sensitivity to any sensory input is still so very strong), but especially as his speaking is so much better today it was great that they could talk.

After yet another rest, he wanted to shave -- he did a pretty good job too. So in general he is looking *so* much better. Also, shaving meant looking in the mirror -- something he intentionally avoided doing until now. I did not ask him what he thought, knowing he would tell me when he was ready. Later he told a visitor that he had done this, and that it had not been as bad as he feared. He sounded quite positive. And indeed, he seemed to get a crazy burst of energy when this visitor came, and he chatted away for quite some time. Occasionally a bit disjointed or even slightly bizarre -- but he is still on morphine! It was quite amazing really. He was very tired for the rest of the evening, but in fairly good spirits too, exercising numerous attempts at humor.

Throughout the day he kept coming up with random tasks that need to be done at home, and of things he would like to Sharon to buy, and he even tried drawing a diagram for the computer's broadband set up that yet needs to happen. Neither Sharon nor I could make much of the diagram (!) but that could be partially due to the fact that we are two literature/theology majors, who are used to relying on our engineer husbands for comprehension of such things. But what was really important was that Greg had grabbed a pen and paper for the first time, without stopping to think about it, and had scribbled away.

So, as expected after I had processed the shock of that morning phone call, it was a really good day for Greg. (He can't even ring out from the phone in his room so I can only imagine what the poor nurses thought when he was insisting at 8:30am that he must use their phone to ring for another pillow!) Each day he continues to improve in leaps and bounds, even as the day progresses. Please keep wisdom and self-control for Greg in your thoughts and prayers, for he needs to find that balance of determination at progress, and not pushing so hard that it actually threatens regress. And only he will be able to stop himself from "overdoing it".

Each morning he wants to know who has left a message, who has sent a card. So please be encouraged that even if you don't hear back from me, Greg hears of your calls or cards and they encourage him. Just today he discovered that he is allowed to receive text messages on his cell phone in the hospital, although we had been told before that the phone had to be off at all times. So if you do know how to text, please feel free to do so, because he will be able to turn on the phone and read them now -- maybe just best that no one actually rings on the cell phone to talk on it between 10am and 8pm French time.

Tomorrow we will see the neurosurgeon again, and will have more news. Each day we hear of more of you who are following the blog, and this too really makes Greg feel so much *not* alone in his day-by-day journey. We have heard that some of you have left "comments" messages, and he is so eager to read them! Each little thing for him to look forward to is no little thing at all. So with many, many thanks, for your presences and care, until tomorrow with its news,
Kirstin (much fortified by Sharon Jebb's excellent lentil soup!)

December 18th, a.m.

A quick note, more later.
I was woken up by a phone call and was shocked to hear Greg’s voice. He had rung to ask for a pillow and I was amazed at how clearly he was speaking and how much.
I think it’s going to be a good day.
Love Kirstin.

December 17th

Dear All
Today Greg went for his first walk! Already! Only a couple of days ago he couldn’t stay awake for more than a minute at a time. He walked all the way to the Christmas tree (perhaps 25 feet?) and back this morning. This afternoon he made it to the end of the hall (twice as far) and back. Of course both walks exhausted him and he slept for a very long time after each. A big accomplishment.

This morning the neurosurgeon explained to Greg that going to Briançon is only to teach him how to walk again (due to deafness in one ear etc such patients need to relearn balance, equilibrium). Physio for his face will occur in another place called Voiron. So if Greg is actually able to walk in a manner that satisfies the doctors before the Briançon departure date, then he needn’t go there at all, let alone for two weeks! I’m fairly sure this lies behind Greg’s determination to walk the second time, to reach out and touch the fire extinguisher like it was a goal post.

When I walked in today Greg greeted me with a verbal beginning of a list of things for his father to do once he arrived. Definitely another good sign that, fragile as he yet is, and unable to make simple decisions most of the time, at other times his brain is ticking incredibly into action. Apparently he also told the head neurosurgeon that he should fire his students, because they couldn’t name a certain neck muscle. The surgeon had to explain to his students that this was an example of British humour.

Greg also ate a little food today. He hates that he can’t taste anything right now – hopefully this won’t take too long to return, as it lessens his desire to face the challenge of eating (and with putting up with my rustic feeding techniques). His nausea is significantly less.

The welfare officer from Greg’s work, Isabelle, rang today. She is the angel who, between midnight and 2:30 am, was the translating go-between on the phones so I could figure out what was going on with the operation and helped enable my 2:30 am visit. She wanted Greg to know that at the ESRF Christmas party many many people were asking after him and wishing him well. She said that it is amazing that Greg has been at the ESRF such a short amount of time and yet so many people already know his laugh and smile.

Greg is still the only patient in his room, which is a gift – not only for privacy and peace, but it also makes many daily tasks much easier when one merely has to shut the door for privacy.

Greg’s temperature still vacillates a fair bit – much of the day I am wiping his face with either a warm or a cold cloth, depending. Oh yes, and he had to bear with me attempting to brush his teeth today. “Is that really how you brush your own teeth?!” he asked in semi-horror. “No, remember I have an electric toothbrush!” Another skill needing fine-tuning.

As we prepared to leave tonight Greg said, “you’d better fill up the tank tonight, as tomorrow is Sunday and gas stations will be closed.” Gosh! The man vacillates between not being able to listen, let alone speak, to shocking moments of brain in overdrive! And he would not let off in his concern that I would get the French word for petrol – gas – and for diesel mixed up until I managed to come up with an alliteration - that pacified him: “gazol guzzler”.

Greg has yet to sleep longer than 2 hrs at a time. I thought that he might manage more in the late afternoon today – but he kept on waking up with bad dreams. For those of you who do pray, please pray for some restful and good sleep.

I laughed at him today when he kept on trying to make me sit down while washing and massaging him. He found it hard to accept that it was ok for me to stand sometimes. I told him that we have a big learning curve ahead of us: each learning when to rest, and each learning when to let the other work, when to say stop and when not to. Some things fall into easy divisions of tasks: for example, he uses his strength to open the new bottle of water, I use my stability to pour the water into a smaller container with a straw for him to drink. Team-work. I think our future will be even more shaped by it than our past has been. Learning to anticipate, to receive, to be wise in our own choice of action and non-action for the sake of the other as much as for oneself. This is what it means to be in relationship, is it not?

Christmas is a good time to think of such things as Greg and I were reminded by the latest Wim Wenders (Don’t Come Knocking), none of us live in isolation of others, even if we try. Relationality is an integral aspect of our humanity. As painful as it can be at times it is a gift. So, with thanks for the relations we have with each of you, may they be far or near – love, Kirstin.

December 16th

Dear All

Each day looks a bit better and Greg can move his head and hands a bit more. Today he actually made it, with the assistance of two nurses, over to the chair in the corner of his room, where he was able to sit for about half an hour. As of this morning the only tubes still attached to him (at first there were so many!) is the “drip,” which will remain until he is able to start eating properly on his own. Aside from the nausea and a throat still sore from tubes, having no feeling in most of his tongue and one full side of his face means that he “looses” food over on that side, and then chokes on it. So, so much to learn.
When the neurosurgeon came in today he was quite sober. “We did all we could, but it was not a good situation, you understand,” he said. His face revealed that he is feeling bad for Greg, even though Greg put on a really cheery face for him. Typical Greg: he is worried about the doctor feeling too bad for something that no one had control over. But it was the doctor’s own face and attempted words of encouragement that made me cry for the first time since the surgery. He wanted to make sure that we understood that it will be quite some time before we know how much of the paralyzed half of Greg’s face will return to normal, if at all. And that there will be much hard work in the months ahead. He also indicated that we should know by Monday or Tuesday when it is that Greg moves from the hospital here to the rehab one in Briançon. It will be great to know, as right now we have no idea where we will be for Christmas (Grenoble or Briançon), let alone by the time Greg’s parents are here (a few days later).

The days each seem an eternity for Greg. I remember this from my own post-surgery days. It will be better when he can focus or concentrate, for then there will be people and things to distract him. But right now, even when someone else is talking, he is hard pressed to follow more than a few sentences at a time. He sort of fades in and out (he can’t even concentrate enough to look at pictures right now). It will still be a few more days before he is up to really engaging with visitors. But a few tips for those who live in the Grenoble area and might visit: remember Greg can’t see much or hear at all from the right side (of the bed), so please come around to the far side (his left side) of the bed. As he is overly sensitive to all sensory input, please try to keep your voices very quiet and calm, and, as it is hard for him at times to follow and concentrate, speak slowly. If you are not loud enough he will let you know. Right now he is not up to more than a five to ten minute visit – but don’t feel like that is a waste of time, being so short. That will give him enough stimulation for a couple of hours. Also, Greg is very sensitive to touch. Sometimes he can handle the stimulus of gentle stroking, but often no more than a touch, if that.

Greg looks forward to my reading the get-well and Christmas cards than come in the post each day. Sometimes he is up to looking at the pictures on the front of the card, sometimes not. But they all go on the wall, so that when he is able to focus better, they will be there, cheering him on.

This morning he thought he overheard someone say than his case was a bit of a “catastrophe.” Whether that is actually true or not, it is not a great thing for him to have floating around in his head. It is a strange thing, going into the hospital seemingly in good heath and physical form, and then having an operation which make you seem much worse rather than much better … but we know that had he not had the surgery, he wouldn’t have been alive in a few months. And, it seems, if he had had to wait even a couple of months longer, his right limbs would have been paralyzed as well. Knowing such things changes one’s perspective.

The “jazz man” in the next bed has gone home now, and it is wonderful to have the room to ourselves now.

Sharon is helping me to work through the phone messages right now – so if you asked for a ring back, you might hear from her rather than from me. With just a little time in the mornings and at night before bed, I’m slow at catching up on anything – and right now I am just trying to be with Greg as much as possible. So forgive the lack of phone messages – hopefully this blog will serve as a replacement for at least a few more days.

With continued thanks and love – and always with hope – Sola Gratia, Kirstin.

December 15th

Dear All
As the neurosurgeon did not make it back to see me tonight, I’m afraid I don’t really have much new technical news on Greg’s medical state. When I arrived this morning (after unexpectedly spending the night sleeping at the home of our Bavarian friends, and being looked after incredibly) I was amazed at how much better Greg looked, how much more he can move his hands, and how much more he was speaking. Speaking is difficult and frustrating for him as half of his mouth doesn’t work. He is asking questions and giving sentence-long responses now. Engaging this way fatigues him quickly. He would much rather listen than talk. He is still in a fair bit of constant pain, but his morphine dose is less. He has yet to feel up to eating, but realized today when presented with a gift of apple juice that that was exactly what he had been craving. Every time he drinks though, or moves his head at all, he gets very nauseous – as he has no hearing now in one ear it will take his brain some time to adjust without getting vertigo. Yesterday he wanted me to stroke his head almost continually all day. Today his body was too sore to be touched much at all. It will be a day by day learning experience for us both.

Greg’s side of the room is beginning to look like a fantastic art gallery – a gallery of love and encouragement I guess, if that doesn’t sound too corny. Each day it has more beautiful paintings and drawings by some of the many children who love Greg so. Some have drawn pictures without there parents even suggesting they do so. Around these are cards and pictures from friends around the world. No longer austere blank walls for him to look at. Thank you.

Please remember to keep Greg’s family in your prayers – his mom is still in Canada and his dad is in India right now, which must be particularly hard, being so far away. Forgive me for not returning many phone calls. It is lovely to hear folks voices, but as I can’t turn on the cell phone inside the hospital and it is below freezing outside, my limited time and energy is being rationed to Greg’s family just now. I hope it won’t be too much longer before we have access on-line here at Pré Borel … and that will save Greg’s dear workmates from having to type out the ‘blog posts’ as I read them over the phone!

With love,

Kirstin

the first day

Dear All,

We arrived at the hospital this morning expecting to visit Greg briefly in the Recovery Ward and found that he had already been moved back to his original room. That was good news, as it indicated that he was doing well enough that, sooner than expected, he did not need to be under close surveillance. I have spent the day with him. He is still very very groggy – unable to say more than a word or two at a time, but he looks over at me everytime he opens his eyes, has managed a few smiles, and even patted me on the head at one point !
I am especially impressed at his ability to follow all the nurses questions and instructions in French and his ability to respond.
I saw the neurosurgeon this evening after Julie had set off to return to Scotland. Sharon Jebb will arrive tomorrow. The neurosurgeon said that he had given Greg a report of everything this morning, but that he would go over it again with me. The news is neither fantastic, nor terrible. It is this:
The surgery was much more difficult than expected, it lasted more than 12 hours. After attempting the route that would have saved part of Greg’s hearing in that ear, it became evident that the tumor was pressing the brain stem much more than they had expected and had adhered more. In addition, the facial nerve for the right eye area was spread thin so taught over the tumor that it was almost invisible. So they had to change routes, sever the hearing nerve, so that they could save even more important ones. The nerve for the area around his right eye is now thin enough that we will have to wait several months to see if it grows back or not – at the moment Greg has no sensation in that area and he is unable to blink that eye – a stitch currently holds it mostly shut, to keep it moist. In addition. As mentioned before, the area around Greg’s mouth on the right side is partially paralysed and it will probably be a few weeks before we know whether it is all temporary or if a bit will be permanent. This, in addition to his fatigue, is what makes it difficult to speak right now – though it makes for an almost more charming smile than before.
What the neurosurgeon was most concerned last night, was damage to the brain stem which would result in severe damage to the motor abilities of Greg’s right arm and right leg possibly even paralyzation. He said he was quite anxious for a few hours, but once Greg finally woke up, it quickly became clear that Greg was moving those limbs normally. Indeed as evening wore on tonight, he became more figity – not that thrilled that his new roommate (who looks like a Jazz saxophone player – long and lanky, handsome smile, and even head on the right hat with the right shades – despite being indoors on a dark, cloudy day !) has the TV on nonstop. But as he figits, a bit restless, a bit hot, it is indeed clear that his arm and leg movement are working pretty well.
The neurosurgeon said he was also a bit surprised at how long Greg was sleeping, and wondered if that was a concern, but now is convinced that Greg sleeps well ! (They did a CAT scan just to make sure all is fine - and it is).
Greg seemed to follow well all the neurosurgeon was saying to me, and gave him the thumbs up a few times when asked if he was doing ok, and if he had followed all the dialogue. But it did exhaust him. The neurosurgeon said that he would see me again tomorrow, to keep checking on Greg and to keep me updated.
I am sleeping at a friends place tonight and I will try to send another note tomorrow, as long as I haven’t worn out Alex – the blogger’s fingers. If you are in the Grenoble area, my guess is that greg will not be up for visitors before Saturday for sure. But be assured – it won’t be long before he is longing for them !
Good night to all, with thanks for prayers and best wishes –
With love (or, as the new roommate keeps saying. Bisous ! – ‘Kisses’)

Kirstin

After op

Dear all,

At 2.00am Greg left surgery, the doctor was pleased with the operation - but the late finish was due to them wanting to wait for Greg to wake up naturally before assessing him - but he slept longer than expected....which he has always had the ability to do so!

My "pregnant" friend Julie and I saw Greg into theatre at 7.30am on the 13th and finally left the hospital at 3.30am on the 14th, hence are exhausted but fortunately saw a dopey Greg for 5 minutes which was great. He was aware enough to squeeze my hand and then he fell asleep again. The area around his mouth is partially paralysed, so hope and pray that this is temporary. It will take some time for the doctors to be sure, but since the area is not large they are hopeful.

I will see Greg briefly twice today and also have an appointment with the surgeon, so hopefully will have more news tonight.

I have developed a sinus cold but hoping that Greg didn't catch the same bug, so hope and prays for this.

On last note, the surgeon and head of the surgery dept. visited Greg before the surgery to wish him well. I was touched by the presence of the dept. head, who was the first surgeon we saw after the diagnosis and this wasn't even his operation, but I think that he has a soft spot for Greg! And we are greatful that he is not the only one.

With thanks, more later

Kirsten

A few words

After a full weekend with unpacking and packing both, we are heading into the hospital now. I'll check in (5 stars, this hotel) at about 3pm, enjoy a leisurely French hospital meal for dinner and the operation starts at something like 7h30 or 8h00 tomorrow morning. Speak to you all soon!

Our friend Alex will be posing as myself and writing an update in the evening once I come round - don't be confused - I shan't be typing from the bedside...

Brilliant news this morning as we went to the rheumatologist and received a prescription for etanercept. It is an anti-TNF drug of the very expensive and efficacious variety that we have been after for some years - Thanks be for the French medical system! She will start this week, and improvments should be a matter of days! Good news indeed. Kirstin threatens now to bring me coffee in bed as I replace her as the invalid of choice...