Turning the Page

Dear All –
I think this will actually be our last blog on this site. Greg’s state is stable enough now that from now on we will just be keeping you up to date on our lives in general from the http://letrangers.blogspot.com/ site. We’ll still be fairly regular in our postings for a while at least – every 2 or 3 days (instead of every day), but as we are blessedly to the stage where Greg’s life is now able to incorporate so much more than medical angst, “myacousticneuroma.com” is no longer fully appropriate. Phew!

There’s still a long hard road ahead of Greg: building up his daily strength, teaching his brain not let his stomach get nauseous when he turns his head, figuring out how to eat on both sides of his mouth despite lack of feeling and taste on the right side, doing physio, and more and more physio, as he learns how to speak the new way, and Waiting. Today he said that he wouldn’t be so fussed, now, about the rest of his face, if only his eye’s blinking function would return. Much of his daily actions still do rotate around eye-care (patches, eye cap, constant drops, synthetic tears, protecting gel, etc), and will continue to do so…either until the nerve is able to regenerate, even a little, or, if not, until more surgery occurs. If the nerve does not regenerate, there are several different operations Greg may have to face, such as taking nerves from other parts of the body (tongue, leg), and trying to “rewire” how his face works. It’s a bit scary, and we really hope that that won’t be necessary…but Greg is very aware that there is still no positive indication of eye nerve, let alone mouth nerve regenerating. It is not quite a month yet, and so far too soon to give up hope. But it is hard to Wait, especially with a lack of hopeful signs.

He will continue to have kiné/physio twice a week for a long time yet. And of course fairly regular appointments with the surgeons, at least until they know what is happening with his eye. His stomach wound looks great (!) – he no longer has two holes…just one belly button and another well-healing scar. The nurse will just check up on him on Tuesdays, when he comes to give me my shot. [A few folk have asked that we give an update of my health!…now that we’re done on the acousticneuroma site, in a day or two I’ll try to give a bit of a proper update.] Greg still needs to take his vertigo meds every day, but he’s down to almost no pain meds now. Sneezes and coughs are still awful, but they don’t take him out quite like they once did. And he does get achy headaches fairly often – but as this is an after-effect faced by many acoustic neuroma patients, it is likely a long-term reality. As he said the other morning, they are a bother, but nothing like the brutal headaches he’s had every few weeks for the last few years – most likely caused, we now know, from the tumour itself. The “tumour-is-gone” headaches are an easy choice over the “tumour-is-here” headaches.

We continue to be amazed by how many of you have walked through this with us. In addition to family, you have been friends from all corners of our polygonal life (that is, life with a heck of a lot of corners!) Although there are some privileges to be accrued from a rather transient life, being so often on the move also has many draw-backs. The biggest of these, without a doubt, is that you end up living in far too many different communities to ever be able to adequately keep up with all the folk you love and treasure. Especially when you receive the privilege of living in and among special people and communities each time, which has been the case for us. Indeed, the result of recurrent moving is not just the joy of meeting wonderful people, of discovering new friends, but also the frequent heart-tearing of saying goodbye…and knowing that each time you do so, there are more and more people in your life with whom you will not adequately keep in touch. We hate that. If we had each lived in only one or two places, it would be different. But between us we have lived in more than 25 separate places (many different countries and regions) – how I envy those who have only lived in one or two! – and each move means leaving more people behind, means dividing our already pathetic correspondence skills smaller and smaller. And so it has meant much to us to receive the notes of care and encouragement from those of you flung wide across the globe, especially from those who we have not seen for far too many years. Some of you have even shared concern for Greg with *your* friends and families, and so we have had the incredible experience of being carried not only by friends old and new, but also by gracious folk we have not even met. It has been an amazing experience. There has still been pain – emotional as well as physical. And there is still more to come. But as has been said before on this blog, we know we are not alone. And that makes a Difference.

I know I am not unique in being entirely new to blog-dom. I doubt I have even known the word for more than a year – for some of you other non-techy types it has even been less! Some have acknowledged this as your introduction to blog-dom, and others have graciously (or mischievously!) conceded that though you avoid blogs in general, this one had its place. I am grateful for Greg’s thinking of it, for it has not only kept all appraised at a time when I could not be doing so, it has also meant that when we do talk to you or visit with you, we needn’t start at the beginning. You are already in the story with us. And, of course, it has put us back in touch with some of you who we have missed. As so often in life, it is impossible to know how to adequately say thank you…let alone do so. But ‘Thank You’ nonetheless. Very Much.

Joyfully in Pré Borel,
Kirstin (& Greg)

No News is Good News

Sorry there is essentially no blog tonight -- on the phone too late, and am now too tired! Will update better tomorrow -- but Greg did go on a 45 minute walk down our country roads today!
'Night,
Kirstin
(Greg chose the title!)

Cycles

Hi, it’s Sharon again, writing my last guest blobspot as Frank and I depart tomorrow morning for Ottawa. It will be a long day of travel – Tullins, Lyons, London, Ottawa.
Fatigue, as Kirstin has reminded me several times, can be a good thing, especially when it’s well earned and no matter how one exhausted one feels the next day. The means of the fatigue is actually good for one’s mental health and general well-being. We had a slow, relaxed start today after having had an evening meal out in Grenoble last night where we overindulged in not only cheese but also chocolate fondue.
By the time Greg surfaced this morning, Frank had already done a number of errands and was tackling a few remaining jobs on his list. What started as an uneventful day became something else – in that delightful way in which serendipitous things just happen in the most unexpected way. Greg and Frank wandered outside to discuss a few projects and possibilities. Glancing through the window later, I noticed Greg pushing the wheelbarrow! Meanwhile, Kirstin was busy preparing a real French cassoulet for our last meal together. As any of you know who’ve tasted this amazing dish, it is nothing like so simple as opening a can of baked beans and adding a few sausages, a warning against which Elizabeth David, the doyen of cooks, mentions in her recipe discussions.
After some time, Greg invited us to come outside and observe something as yet unspecified– the reality of which remained to be seen.
First we were shown the inner workings of the ancient wine press which sits out in the yard not far from the bird feeder table and G and K’s bedroom window. But this perusal of the press’s innards was not enough, so we were then treated to the next discovery of wondrous proportions. For those of you British people who have had the pleasure of viewing the BBC television production entitled Fred Dibnah’s Industrial Age, Kirstin and I had own our private viewing of a most wondrous piece of engineering that slowly revealed its hidden treasures. Greg and Frank explained how they had slowly put together an apparent piece of junk lying about in the garden, realizing that it was the top part of the wine press mechanism. They oiled it, and moved odd-shaped pieces around to get the gizmo to work properly, slowly discovering for their engineering selves just how and why the levers and handles, cogs and gear wheels worked as they did. It was really like a private session with Fred Dibnah, all the more enjoyable because we’ve been watching him on several past evenings, and now had our own show! All that remains of that job is to move the few tons of this mechanism over to the existing winepress, reconstruct the rotten wooden slats, and lift it onto the drive shaft. Obviously it’s a job that awaits another visit, as well as some consultations with some old fellow who remembers the ancient days and ways.
While Kirstin and I continued our garden stroll, I glanced over at the barn and to our silent amazement, Greg wheeled out a bike that Frank had been riding earlier, hopped on it and rode around the garden, quickly threading his way through the willow branches and out again. His only comment was a somewhat surprised “that was easy”. I have got to admit that I was not overly surprised to see this brief bike sortie for a number of reasons. I’d brought Greg one of Lance Armstrong’s books, and he was already reading the other one. Frank had been out biking and frankly the flat back roads around Pré Borel are perfect for some quiet workouts. I didn’t think it would be too long before Greg would want to try out his bike in such safe road conditions that would really challenge his mobility skills. I just didn’t expect it would be today!
For the rest of the afternoon, Greg supervised Frank’s digging in the garden while they waited for enough darkness to test the motion detector’s light.
Dinner, need I say, was delicious. However, the moment the plates were clean both Greg and Kirstin retired to the kitchen couch for a rest, while I prepared a special Epiphany Day dessert. Yes, I know it was a day late but as was mentioned earlier, we were out partying last night. Now, the second stage of our meal is ready so...
We’re going to play a new game called Blokus to conclude our last evening together for now. Greg had to trade the pale yellow tiles for a brighter colour but played manfully well for all his limitations. His brain was definitely up to the challenge.
Frank and I won’t be here tomorrow to see how tired Greg and Kirstin are from all of today’s activities but we can be confident that they, and we, will have spent an entertaining, instructive and memorable time. Certain kinds of fatigue, as Kirstin reminds us, are precious and valuable beyond words.

Sharon

More Fully...

Dear All –

Not too long a note, as we have all just returned (10:30pm!) from dinner out at the Fondue Restaurant in Grenoble. Fondue is a grand “Ottawa Johnsons” tradition, and so it was well enjoyed by all – Frank and Greg even managing to top off their cheese fondue with a chocolate fondue! I fear we shall sleep late yet again tomorrow morning, but it’s an indulgence we don’t feel at all guilty about these days!

It ended a good day for Greg. He was very tired this morning, and latterly quite nauseous. Around noon he took his anti-vertigo pill, and it seemed to get rid of the nausea in about 15 minutes. A mix of good and bad, that. Good to know that the pill gets rid of the nausea so fast, but a bit depressing for Greg to realize that he is still that dependant on the pills to repress his vertigo. That means the vertigo is still there even when moving about the house, but is usually suppressed by meds. Nonetheless, Greg was buoyed by the morning’s spate of e-mails (it is developing into a morning routine: coffee in bed, as we both wait for our morning meds to kick in, with me reading e-mails out loud. There are some benefits to not being allowed to face the 9-to-5 shift…even if the cost is higher than I’d usually recommend!). After the slow start, and a visit with our neighbourhood nurse, Greg and his dad headed into town for G’s physio, and his mum and I hit a few of the towering piles of boxes of books in the “Library/Kirstin’s study” (about a third of the upstairs is still in boxes…but we made a serious dint). -- I must steal a moment here to say how much I love pulling various items out of boxes which remind me so much of the giver – one of the many little but important reasons why ‘gifting’ can be so Good. For decades these items remind the recipient of the others in his/her life, and the many associated memories. (I hope some of you realize how incredibly restrained I am being here!! I could write an entire essay on why I think gift-giving can and should be Good…like much else in this world, it can and has been corrupted, but it needn’t be, at all! Some pretty good examples have been set out for us in Timeless Stories… -- ok, tangent reined in!)

Greg’s physio: WAY better today. He came home in a good mood, and told me that he had learned a new French word: “impec.” “’Impec?’ I asked. “As in impeccable?” Yep. “Well that sounds positive…what was impeccable?” His face exercises apparently. The physio said that he was doing those…well, impeccably! But the physio also guessed correctly that Greg wasn’t talking much ‘the right way’ in front of anyone other than ‘the boss’ (as the physio calls himself) or Gregory-in-the-mirror. So he needs to start working on that. And I need to start remembering to catch him, and subtly, non-naggingly, remind him. Possibly a bit of a challenge! As any of you who have lived with another person for a while knows, sussing out when it’s a good time to bring a person’s attention to a repeated weakness, and when, for reasons of fatigue, mood, or simple bad-timing, not to, is not always easy! Even if they’ve asked you to do it, even after several years of marriage ;)

The physio also swung Greg in the chair again. He felt sick again, but not as bad as last time. He also told Greg that next time he goes to the Underground caves, he’s not allowed to use my arm. Asks I: “But what if *I* need help?!” Well…maybe then, a bit…! Really, we are a rather humourous pair at times. I put in Greg’s eye gel, he puts on my socks (each on the other of course!) At night he unbuckles my bra, I put on his nightly eye patch. Etc, etc. We figure we’ve got being in our 70’s together down pat!

I was reminded tonight, as we drove through downtown Grenoble, of the night Kara (Greg’s sister), Greg and I walked along the river, back to Peter and Sophie’s. Greg was in a very foul mood – he even mentioned it, on one of his early blog entries…mentioned not being very civil to either his sister or me! Reflecting back, I’m aware that that was the only period of length in which Greg has allowed either his fear or frustration about the tumour to dominate his relationship with others. Don’t get me wrong – he ain’t no saint, as he or anyone who has lived with him will freely attest to (Just as, I hasten to add, will anyone who has lived with me! [Greg in particular!!]) And he hasn’t suddenly become a saint since the operation either. He has his bad moments. But he never lets himself stay there for long -- even if it’s a day when it is a struggle not to slip back in. Even the other day when he was really down, and he realized that he was getting too snappy with his mother and me, he took himself away to the bedroom until he was in a better space. For someone who has spent the majority of his life pretty darn healthy and physically active, I’m pretty impressed really. He’s not perfect, but I do think, if I dare use the language of the guy I’m writing my thesis on (and which may sound fairly weird to some of you – but I’ll use him, George MacDonald, as my excuse)...I do think he’s ‘becoming more fully human’ in the midst of this. (do what you will with that!)

OK, enough bizarre talk for the evening – until anon,
Kirstin

PS – I can’t tell you how much your messages are encouraging us. Thankyou so!
PPS – We just saw the date, and realized that it is ‘Epiphany’ (no irony intended there!), or ‘Three Kings Day’ or ‘Twelfth Night’ (just a few of its many names). How we messed up the date of our favourite lesser-known holiday, we haven’t a clue….we’ll celebrate it tomorrow, but a Happy Epiphany to you all in the meantime. Revel away!!

Grotto blotto

Dear all - a *much* better day today. Last night Greg and I sat in bed while I began to read blog comments to him. Eventually he began to fall asleep... what a wonderful way to fall asleep, with so many words of love, care, and encouragement lulling him into quietude. When he woke in the morning, we carried on - now sitting in bed with our cafe au laits. Many wonderful blog comments and direct emails (greg.johnson AT esrf.fr) - thank you so much. As one comment pointed out, it is so very obvious we are not alone in this. And that is so very Good.

After a long reading time (!) I came out to the kitchen to discover a card and a letter - what indulgence! It was good that friends then arrived to checkup on Greg, so that we could extend the pleasure of awaited reading.

Then we embarked on Greg's first big leisure excursion: we drove with his parents up to the "Grottes de Choranche," an incredible cave system in the Vercors massif (mountain range). None of us have ever seen anything quite like it - Frank took well over a 100 photos during the 45 minute tour. Greg loved it (it had been his idea), but he also found it frustrating. I pointed out afterwards that it was about as challenging a venture as could be imagined for someone with impaired vision, no depth perception, poor lack of balance, and impaired hearing; the uneven footing, darkness, bouncing sounds from 20 school children, narrow and slippery walkways, stalagtites to dodge around and stalactites to duck under, all of course on completely new terrain... were not easy. Tiring for all of us, in the midst of the beauty. So while he was a little frustrated at how hard it had been, the rest of us were amazed at how well he had done. Perhaps this will become a familiar pattern.

We have now eaten a very full and lovely dinner, once again, and once again, I think we shall all sleep fairly well. The exercise, as much as anything, will have been particularly good for Greg.

He is on the computer now, feasting on emails. It is hard on his eye, so I don't think he'll last long - but I will quite enjoy reading more outloud. As said, they were so encouraging - and humbling - for us both. Hard to feel alone when friends of friends you've never met are worrying about you and praying for you!

Okay - Greg has just told me that I look "blotto"... which in his vocab means 'more than a little tired.' So I'm off to bed, very glad to see my husband doing so very much better than yesterday... and some of the thanks goes to you.

Love,
Kirstin

PS This is the first blog we've typed ourselves since the operation - ever so much thanks to our blog typists: Alex, Bruce, Adrienne, Jen, Amy, and Uncle Grant!

January 4, 2006

Dear All,

Tough day today, emotionally, for Greg. He woke up tired, and fairly depressed about long term realities. Grieving days like this are important too, because it's not good for Greg to be in denial or to repress his feelings about the losses and challenges. As long as the tough days don't begin to overwhelm the positive and determined days -- and there's no sign yet of that happening. I'm really quite proud at how determined Greg has been to "fight well." And at how well he's done it. But in some ways, I think the hardest days are yet to come. As what he calls his "general euphoria at realizing he's alive" starts to diminish into the normalities of daily life, as he plods his way through seemingly very passive physio excercizes, the monster that is the "Tedium of Waiting" looms large. As most of you know, Greg is wired to Act... and the days, weeks, months of little change will be really really hard. He also has real fears about his eye, and whether more surgery might be required. It is possible. He will have many many questions for the surgeons when he next sees them on Jan. 25. He was a little overwhemed with fears and frustrations of all sorts, and finally went back to bed and slept most of the afternoon until a friend came to visit at 5 p.m. I think the sleep did him good, and he was a new person as he chatted and listened to our friend. Instead of the depressed sound in his voice and look in his eye, by the time she left he was tired with a smile.

Tonight he is in a much better space... and, he is busy looking up post-surgery acoustic neuroma information while the computer downloads your emails and blog comments. Yes, thanks to the gracious effort of a good friend, we have -- as of tonight -- internet access. It is only modem access -- very, very slow access. It will still be another 3 weeks wait before we have normal access, but it does mean that bit by bit we can begin to read your mail. We might not be responding much before we have a better connection, but this is a beginning -- and how glad we are to begin!

It is impossible to predict when Greg will be too tired for interaction, but when he is not too tired, he is longing for it. So do feel free to visit -- on the phone or in person. His one bright spot this morning was when I read a postcard from Greece and a letter from Canada to him. Of course Greg's innate longing for information will mean research online will start competing with phone time -- so don't be surprised that the phone is busy!

Our stomachs are contentedly full with some mysterious French delicacies prepared for dinner by Greg's parents. Happy stomachs always help.

Off now to watch a BBC DVD on the body -- guess we figure we don't know enough about that marvellous creation yet! Thank you for your continuing cares.

Kirstin

January 3, 2006

Dear All,

Just a short note tonight, as I'm very tired -- we stayed up a bit doing much needed paperwork and paper sorting. It has been weighing on Greg's mind in particular, so he will definitely sleep better... but we are both *very* ready for bed.

We had a wonderful day-long visit with our friend Jen -- one of three dear friends who lived with us at various points during our time in Scotland -- so it was a bit like having family, really! Even the cat was pleased to see Jen (one of her biggest fans)! Unfortunately Jen is only in France for two days... and yesterday she tore a bunch of ligaments while skiing with her husband, so we were quite a trio lined up on the couch... Jen adding her full leg cast to the mix! Our nurse was a bit amused to find three patients on his hands -- but completely unphased! He gave Jen the injection she had been handed at the hospital, gave her some further advice, then moved on to attend to the Johnsons. (He didn't have the greatest of mornings actually, as the needle for my medication broke, spilling the medicine... as each shot cost almost 400 Euros, it's not surprising that he was pretty angry with himself. But none the less, he remained as charming and lovely as always... giving us advice on good plumbers and workmen in the neighborhood. Having been a nurse for over 30 years in this area, he knows everyone!)

So, a good day with a friend who knows us and our foibles well. (As she relaxed with the nonactive crowd, her husband was able to return to the Alpine slopes with friends.) Greg was really tired after a big day yesterday, so had a few good naps. His occasional headaches bothered him a bit -- especially when he had to sneeze, which is quite painful. He's also still a bit down after realizing at the physio yesterday that there are still vertigo issues to work on. For example, when he shakes his head everything spins for several seconds, and he can feel queasy. And long term questions about his eye are worrying him more. It was good to have Jen here as a distraction, especially as, now that he is getting more active, he is starting to get antsy when not too tired.

He spent some time on the phone tonight quizzing his English Best Man, who is a doctor, on all sorts of nerve and reflex issues. It is a gift to have such medical friends and family to talk to, especially when down, and needing to discuss tough realities.

A further frustration during the day was discovering that the reason we still do not have internet access is that the internet company had the wrong phone number -- so they said they would have to start from scratch, and it would be another 25 day wait. Hopefully we can find a good fluent French advocate to plea some expediency on our behalf! We'll look into that tomorrow. Our blog typists have been fantastic... but it would be nice not to have to "phone in" these messages for another 25 days! It would also be nice to start reading and answering some of your emails.

So to bed now, and more tomorrow (Greg gets to take a proper shower tomorrow! The nurse actually called me in -- "Madame Johnson" -- to marvel at how well his stomach had healed up and was ready for a washing.)

Love, Kirstin

January 2, 2006

Hi,

This is Sharon, Greg's mom, doing another guest report. It has been a busy day with a 7:00 a.m. leap out of bed. I know that may not be so early for some of you, but these days it's a very early start for us. Greg had an 8:00 a.m. appointment at the hospital and, considering that this was a holiday Monday, many things were pretty active there. The doctor was pleased that his stomach was healing up nicely, so that's a big relief. And it turns out that the swelling behind his right ear is actually just the fat taken from his stomach that was used to plug the holes in his crainium. Some of it has shifted a bit to make a lump, but it is nothing to be concerned about. We and his regular nurse were worried that it might be another hematoma like the one on his stomach. The fear was that it wouldn't be able to be drained without affecting the spinal-crainial fluid behind it.

From our perspective, the head scar has healed a lot and his stitches were removed last week; it doesn't look so angry and red as it did. In fact, after Greg had a hair cut today, his hair line matched more closely the portion that was shaved before the operation, so that altogether, the incision line doesn't appear to be quite so obvious as before the haircut. Of course, now he has to be careful not to get short hair bristles in his eye.

The other really noticeable difference that we see in Greg's face since we arrived last week is that his right eye appears to be more normal and symmetrical with his left eye, having lost some of its very "wide open and staring," (even glaring) appearance. In that respect, he has a more normal appearance when he is relaxed, so any fears he may have about his appearance should be allayed by that, or so we hope.

Between the hospital visit and a physio appointment we did a number of other appointments that involved a reasonable amount of walking. Here we noticed a continual and remarkable improvement in his gait.Those of you who know Greg probably also know that he has a particular style of walking -- or rather of *sauntering* along. It's not that he has returned to that characteristic style, yet no one could guess that three weeks ago he had such major surgery and just now, he has returned from a jaunt in the dark to a neighbour's place and managed quite well, though he tires easily. I mentioned Greg's ease of locomotion because of the contrast it presents with a friend who also had an acoustic neuroma some years ago. Even after three months this friend could no more than barely stagger along unaided. The difference between them in that respect is like night and day, and so Greg's ability to walk, manage stairs, bend and lean over seem all the more remarkable.

The physio appointment will continue to be a challenge for Greg as he comes to terms with the advice about creating more facial symmetry by damping down his animated side. When he demonstrated the technique for me the other day, talking by moving his jaw and his lips less, it did make a noticeable difference to his facial expression. It was definitely more even.Today he sat in a spinning physio chair that did leave him with a bit of vertigo by the time he returned to the car. But for all that, he seemed to regain himself before too long so he was noticeably tired by the time we finished shopping and drove home. It was a long day so he is entitled to his well-earned fatigue by the time he retired.

Kirstin enjoyed a few extra hours of sleep after we left this a.m. and woke up with renewed energy. It was clear. By the time we returned home, she had been busy puttering around the house, all day tidying, rearranging, putting up pictures, doing laundry, washing the tile floor --putting her own characteristic stamp on the house. The results were noticeable in many different areas. She even had time to talk to Pumpkin without any interruptions from the rest of us! We hope she won't pay for this round of activity tomorrow but as she recently said, some efforts are worth it. For even when they tire her out, she needs to do them for her own sense of well-being. We all hope that Kirstin's new meds will kick in sooner that the three to four weeks that has been suggested before a noticeable difference can be expected. Between Greg and Kirstin, fatigue is part of their normal routine now and how they deserve their hard earned rest!

Sharon Johnson

New Year's Day 2006

Dear All,

It's funny how a particular date can pause one, asking for pensiveness. Christmas, Easter, certain Anniversaries. It is a day, just as every other 24-hour gathering is a day... but for some reason the inked, or even spoken, name of the day makes it different, stands it apart. I suppose because the name is weighted with memories, or expectations -- or both. Joyous, or sorrowful, or both. Usually, somehow, a balance -- weighted differently at different times, for different reasons.

And so, it is "New Year's Day." And this day which begins our New Year has been filled with normalities, surprises, challenges. As a day, perhaps somewhere within its definition, often is. It began with sun pouring in the bedroom window (not having seen sun for several days, we flung it open) accompanied by the chattering of birds, and the drip-dripping of melting snow. Greg slept quite late, having been contentedly tired out by his first evening out last night. (We had wound our way up into the Chartreuse massif and right into a hearth of warmth and joy and good food. Some of our first French friends -- first met 6/7 years ago! -- who have ever graciously and generously shared home and family with us, and who have given us incalculable gifts [such as helping Greg fall in love with the concept of "a house in the country," introducing us to the French artist Arcabas (whose work we love and have shared with others), having children who greet us with big smiles and proffered mouths for warm kisses, and including us in their extended New Year's Eve's gathering.])

Greg was awoken by our cheery traveling nurse, who brought us "chocolates for our health" -- rather fine chocolates they are too! He continues to be very pleased with how Greg's stomach is looking. Tomorrow Greg will be at the hospital for the doctors to check on it. They will also be pleased with how the stomach looks I think, and with the complete lack of inflammation or infection. But we are anxious to hear what they think about the skull incision. It is healing well externally, yet the nurses were concerned there might be a hematoma there as well -- and Greg thinks the bump has definitely grown over the last few days. This is a much more delicate issue, as it cannot simply be drained, like the stomach. Tomorrow we will know more.

The sun came and went through the morning, for rising temperatures meant "snow mist." At one point there was even a serious downpour. Before getting up to putter around the house, and outside, "sorting and tidying," Greg spent some time on his daily physio. Right now, this is the hardest part of the day. Greg has to practice speaking, in front of a mirror. Those of you who have heard him since the operation might be surprised to hear that this is so hard -- but that's because, since then, Greg has been speaking out of the side of his mouth. He now has to unlearn this, and also unlearn how he has spoken for the first 33 years of his life -- because to keep speaking that way now would result in his face pulling sideways. From this point he has to learn how to speak using very little motion, trying to keep as much symmetry as possible. Imagine trying to learn to say the alphabet for the first time as an adult... for this is what he has to do. He watches himself in a mirror, and tries to figure out how to say "A, B, C, D" in a manner that sounds as it should, moving his lips as he should. "C, S, F, and P" are the hardest. He still isn't even comfortable having me listen to him practice for very long. The physio warned him that it will be several months before he will learn how to speak in a manner that sounds "normal" again -- if he can be disciplined enough not to cheat while speaking, and thus preserve his face. Also, the physio said, in learning not to tilt his head to hear people better, Greg needs to begin to learn to lip read. Lots of work, which seems, at times, a bit overwhelming. Not surprising that in French it is called: "re-education".

Greg had another long sleep in the afternoon (and I a short one), and when he woke up we had a lovely time of laughter and goofiness, just us and the cat, even laughing at some of the changes that have affected us. Later, after making some preparation for tomorrow's long day of appointments (hospital at 8:00, physio/kiné at 2:00), and after reflecting during a phone conversation on the fact that (despite the first attempt) he can't really drive right now, because he can't see well enough, he got a little down. He didn't let himself stay there long -- he's off teaching his mother how to make Risotto right now -- but he said to me, with his head in his hands: "What am I going to do if I can't ever see properly?" Because his right eye has to be kept blurry with lubricants, his vision in general is impeded. Try looking out of just one eye, the other closed. Then open the closed eye *just* enough to see fuzzily through the lashes. If you can, do this while keeping the other eye fully opened. Try doing this for about a minute, and you'll probably find it a big relief to close the "fuzzy" eye again, and just look through the one eye instead. This is a little bit like it is for Greg. When he tries to read a little, or watches a DVD, he just covers the bad eye all together (remember, it doesn't close on its own during the day, so he has to cover it if he wants to get rid of the fuzzy aspect). Even looking out from the car as a passenger can be tiring -- but even more so it is frustrating as he realizes he can't see well enough to be driving himself. What will happen long term, if the lid can't learn to raise and close well enough, we're not sure -- Greg will ask more questions about that tomorrow. But it troubles him some.

Yet now he is off in the kitchen, preparing Risotto, pulling out the gifted homemade fois gras (lovely, but not near as lovely as the gift of the visit of its givers -- our friends Louise, Clementine, and their parents... more good people in our lives who so easily bring Greg and me joy).

Rain or shine, we know that the gift of loved ones -- old and new -- will carry us through. We also know that there will be times in which we will need that carrying more than we will want to need it. Other times it will be pure pleasure. Even phone calls, like a few we received today, remind us of this.

A new day, each day. Each a foray into this new year... with normalities -- surprisingly normal -- and challenges -- expectedly *and* unexpectedly challenging. A bit of sun, a bit of rain, and the gift of not being alone.

Love,

Kirstin (and Greg)