Sylvia's Journal

Axel’s first night of freedom, and for that matter his second, was not so great. They consisted of short bouts of sleeping interrupted by long periods of worry and discomfort. The first night he was very anxious about making unauthorized moves. It is funny how we are afraid to hurt our bodies when it is our body that hurts us. When my leg was first released from its cast I was afraid the healed break would not hold, even though I had seen the X-ray showing the bones had grown nicely back together. I only have to look at the picture of the plane wreck to assure myself that our bodies are a tough bunch. It is the rest of us that is frail and vulnerable.

Very early this morning I found Axel up and moving his wedge and some of his pillows back onto his side of the bed. We had a somewhat sleepy conversation about what was going on. He was searching for ‘the right position,’ he told me, “I am just not used to moving like this anymore. I try to sleep on my side but my bones have not been stacked like this. It feels funny and every move hurts.” Suffice to say, freedom hurts and is not quite what it is cracked up to be. I bet the Iraqis feel that way too.

Yesterday morning Sita and I went to Beverly Hospital to get an X-ray of my cervical spine. My stiff neck has thus far been treated only with ultrasound and soft tissue massage. The PT wants to make sure the fractures were healed properly before she starts with mobilization exercises. It sounds ominous. As for the painful right upper arm, its condition has a name now: rotator cuff tendonitis. I thought I was doing good pushing through the pain when doing my shoulder and upper arm exercises. As it turned out I had been irritating the tendon. So for my ankle the pain is part of extending my range of motion. I have to grin and bear it; for the arm pain is bad and to be avoided.

Wayne Bennett came around lunch to take Axel to his OT appointment and returned him when I was on my way to PT. This is very much what our days are like and it is going to be worse when PT gets added to Axel’s OT roster.

I had my first banking and shopping experience since the crash. Combine that with the wheelchair being returned, the ramps gone, me doing the laundry, vacuuming, cooking and some work in front of my computer, and you’d think it was an ordinary day. Life is getting increasingly ordinary, which means busy. The days are flying by.

For dinner Axel was whisked away by Lark Madden for a ‘Boys Night Out.’ They went to a local restaurant with an interesting menu and both ordered venison. I am sure their meal was accompanied by a good glass of wine. Sita, Jim and I had a meal from the garden: potatoes and green beans enriched by leftover chicken and ice cream for desert, while we watched D-Day and the folly of war on TV. My eyes zoomed in on planes, pilots and too many crashes. I wished Ken Burns had finished his WWII documentary before we went to war in Iraq. It might have changed the course of history.

Axel’s body brace is off. Against a background of angels singing hallelujah, he stepped out of his brace and walked. I had secretly hoped that this would happen but had not dared to express this hope out of fear to jinx the visit. Axel’ previous visit to this same doctor had been canceled at the last minute, and postponed for three weeks. We had all been a bit worried that this would happen again.

He and Sita came to pick me up at the PT office and when I walked out Axel stood there waiting for me without his brace. I didn’t notice it at first but then noticed how Sita had placed the brace quite prominently on the hood of her car. It was hard to miss. We had our first big hug without plastic in between. There were a few tears.

Axel’s experience of his new found freedom was wonderful to watch and contagious. As soon as we got home we rushed up to the bedroom and pulled out real clothes. Off with those pajama pants! And when the jeans were on and the belt buckled he finally had proof that he had indeed lost weight, a few holes on the belt.

In the doctor’s office Sita and Axel were taken on a 3-D picture tour of Axel’s spine and understood that the fractures were on the front of his spine (better) and not as bad as we had understood. He can do pretty much anything he wants except picking up heavy cement bags. Back home he promptly picked up a cast iron Hibachi and got chided by both his women. But he did cook the dinner and walked around with a grin on his face and a real beer in his hand, sometimes even moving it to his limp-wristed hand. He still walks a bit as if he has a brace on and we expect a new PT regimen that will require hard work, more trips to Peabody and a doubling of exercises.

Everything else that happened yesterday pales in comparison to this glorious ending of this already glorious day. It was a quiet day filled with exercises and work. I put in some more hours of work, and am now working on two projects which are both manageable and fun to do.

At night we dismantled Axel’s side of the bed; we took away the wedge and most of the pillows and Sita helped Axel adjust to lying down flat with only a pillow or two. He looked a bit anxious as he tried to get comfy in this new position. We left in the small hand railing that helps him to pull himself up into a sitting position. The dinky little thing cost us 130 dollars so we might as well keep using it. With the hedge of pillows gone I can actually kiss him goodnight without it becoming a mountaineering expedition.

We haven’t talked yet about how he experienced his first night without being pinned to his bed. He did not wake me or Sita up crying to have his wedge back. We turned a big corner yesterday. The brace was left by the front door to spend the night outside. It could become a cache-pot. We could easily fit two geraniums inside it. But my preference is to throw it out.

As soon as I wake up I put pillows in my back, one on my lap to serve as a computer desk and start writing. The computer is on standby on my nightstand. Usually I start with my journal but this morning I wanted to make sure I wrote down whatever I remembered from my dreams before they would go poof. From the dreams I remember only incomplete scenes; at least they appear incomplete in my wakeful state but I recognize the themes instantly: something about a fire, about going the wrong direction and about a strong woman. But there are also elements I don’t recognize and don’t know what to do with (blackness, ice, and dead bees). As words they evoke images of dread and doom but the feelings that accompanied them in my dreams had no such negative load and so the obvious interpretation is more complicated than that. I store them for now in my dream journal; maybe the images will be helpful one day in the future, or to feed a nascent poem. I may take them to my next EMDR session.

I have tried to record whatever I remember from my dreams for about 30 years now and some have become very clear from the distance of years while others stayed opaque and a few turned out to be predictive. It is amazing how much work gets done during the night by our minds. It is as if mine never shuts off. During the day the limbs and extremities are busy, but the night is exercise time for the mind.

An extraordinary feature of our existence the last 10 weeks is that we could not take anything for granted anymore and our senses were sharpened, even as pain and nerve problems dulled some parts of our bodies. There was no boredom ever; living as a survivor of a plane crash makes everything new. This must explain the vivid dreams and the activity of my brain at night; while I sleep my mind is like the road crews in the big city at night, digging up broken pipes, repaving roads, moving snow or garbage, fixing stuff they cannot get to during the day because of all the traffic. At night my mind is like that, reliving experiences, relaying neural tracks, reconnecting images or feelings dredged up from the far recesses of my life’s archives and bringing multiple paths together to form brand new round-abouts. Ruth and I are spending much time at these new round-abouts during our weekly sessions. And we are marveling at all the traffic there.

Yesterday was a full day for both of us. Axel went to his physical terrorist in the morning driven there by the guys from next door who have started to organize their shopping trips around Axel’s OT sessions. They have become weekly outings and they seem to have a great time together, helping Axel forget his pain on the way back.

I put in about a third of a workday reviewing and sharpening the draft of a publication spearheaded by my colleague Lourdes who lives in Mexico. We talked on the phone and I have a (self-imposed) deliverable for Friday: a next draft of the 23 page paper on coaching. I sit at my computer writing with my right leg on a pile of pillows on a table. I have to be careful not to twist the rest of my body because that would create more work for the physical therapist who is already spending much time on teaching various muscles, tendons and ligaments to act normal again.

Axel and I had our very first really good fight yesterday, with sound effects, and storming out of room action (which is much more dramatic when the storming is of the slow hobbling kind and you can slam only one fist down on the counter instead of two). Sita watched us but, wise child that she is, did not say a word. We made up in about 15 minutes and things calmed down enough to pick up our exercises again.

Sita took me to PT and when she came to get me one hour later she had a plan. We picked Jim up who needed a break from some very challenging work that involves Excel spreadsheets (Liz Lewis may expect a call soon) and took us to the mall, where she treated herself to a big new screen for her computer to facilitate a new assignment that requires a gigantic illustration. I took advantage of the opportunity and stocked up on chocolate.

We ate half of the duck, finished the lasagna and will be working on the remaining lobsters and duck today. We may even get to some of our frozen dinners tonight, rediscovering things in the refrigerator we had forgotten about. We are doing well: eating well, sleeping well and getting better.

We have just started our 11th post-crash week. It will be an important week because Axel will see the spine doctor tomorrow. We expect he will order an X-ray and then make some pronouncement on this state of his compression fractures, and thus answer our most burning question, how much longer the brace?

I will see my ankle doctor later this week and hope to be freed of my boot. I have already cheated a bit and walked around without it, against doctor’s orders, but it’s too hard to keep that foot packed up when it wants to move on its own. The wheelchair, the crutches, the cane, the walker, and soon the commode are pushed into out-of-the-way areas in our house. I am not quite ready to return them or hang them up in the attic but some of these devices have not been used in weeks, some not in days. The exercises are beginning to show their effect. Axel is becoming more of a two-handed person although eating a lobster last night was still a bit beyond his reach.

Yesterday started quietly (with Quaker meeting) and slowly build up to a rumble and then to a grand finale towards the end of the day. It was a day full of surprises. Sula and Jacek visited Axel and established themselves on the point so they could better see the various WWII planes that flew overhead from their temporary weekend base at Beverly Airport. WWII, or any other old airplanes have a bit the same effect as bluefish and stripers running after the baitfish, they get all the guys in the neighborhood out of their houses. I also look at planes but a different set of synapses are fired. I go for the cute little new planes, without turrets for gunners or bays for bombs.

Alison Ellis, our dear Cape Cod adventurist and discoverer, showed up at the end of the morning with an extravagant brunch which we set out on the picnic table. Having tired ourselves on eating as much of the food as we could, we all settled into hammocks, comfy chairs and beds and napped or read for a couple of hours while the day continued to be a ten plus New England fall day. I sat with Ann Lasman for awhile who had come to dig out the remaining potatoes from our garden. After a harvest of a couple of pounds she decided to let the still healthy potato plants live a little longer and produce more of the small potatoes that was the reason for planting potatoes in the first place. We talked about gardens and made a plan for planting some asparagus crowns before the winter. It is an old wish but I have never gotten around to it. This is a good time to plan for asparagus in the spring of 2009.

I joined the nappers and readers after Ann left and was about to finish another book when suddenly everything changed. First Arne from the Flight School showed up with a cooler filled with lobsters. He gave us eight which we gratefully accepted (it was meant to be leftover night) and put down on the kitchen floor for some entertainment. Then Fatou arrived, coming in from China town, with a friend and a Chinese duck (all cooked and ready to eat, the duck, not the friend). The duck had its head and feet still in place, especially for Sita, to remind her of Shanghai. And just for the fun of it, Axel grossed her out by nibbling on these parts. We settled into an ever widening circle of friends as more expected and unexpected visitors joined. Martin Imm stopped by after his sail out of Manchester harbor and disassembled with Jim the front ramp that had been so lovingly built by Joe Sterling nearly two months ago. Another step back to normal: a normal entrance to the house. We are still holding on to the back ramp for a bit longer, even though we don’t need it now that the wheelchair has been retired from service.

And then arrived the visitors we had actually expected. Dick and Suzie from Charlottesville, who were in the area for a family event, had expected to see only us and found us in a crowd. We had not seen them in over a year and so it was great that they had managed to sneak away for a bit from their family obligations. We tried but failed to keep them for dinner. We managed to snare Andrew and Katie Blair for dinner and with Jim and even Sita, who claims not to like lobsters, we consumed 6 of the eight lobsters. Thus we made a little dent in the abundance of food that rained down on us this last week. However, we still have the duck, the lasagna and a bunch of frozen meals, so we are all set for the next few days. Thank you all for your continued support, rides, efforts, food and company. It has brought us to where we are and it keeps pulling us along on the slow but steady path to our full recovery.

A good night sleep, the right heating and then icing must have contributed to a good start, or maybe the heavy exercise regimen is starting to pay off. Between the two of us we did hours of exercises yesterday. I felt more limber this morning than I have in months. But I am cautious because I have learned that limber now does not mean limber tomorrow, and cause and effect is never that obvious in our recovery.

Sita came back exhausted but enthusiastic from Shanghai, bringing more stuff into the house as well as some spectacular green tea and green tea cookies. But mostly we did not see her as she spent the day recuperating from an exhausting flight and a missed day.

We enjoyed the day sitting outside as much as we could, it was another 10 plus day until the fog rolled in. Tim Browne came by for IT help to Axel which mostly meant moving shelves and things around in his office and sorting out the cable mess. Now Axel is ready to take on the computer-based financial and paper administration of our household again. Tim told us some good stories about his project to bring digitized children’s’ books to parts of the world where libraries don’t work or are unavailable. The most fascinating piece was his discovery of hundreds of exquisite Japanese children books in some US university’s book depository. The books were part of a load of thousands of books that were confiscated by the head of the US occupation administration in charge of censorship after the Second World War.

Woody Kelly came by to report on his trip to England and the launching of a book that features his mom as one of the Airport Transportation Auxiliaries (ATA) during World War Two, “Spitfire Girls” His mom, Ann, one of my heroes, who passed away a little over a year ago, cheered me on as I was learning to fly. A photo of her and two other ATAs at an airfield in Montreal, taken during the war always accompanied me on my flights and was retrieved, without a scratch, from the wreckage. She will continue to fly with me.

Since Sita and Jim were on a completely different time schedule, especially with regard to waking and sleeping, we dined just the two of us on leftovers from several delicious meals and then watched Babette’s feast, a story about redemption and the reconciliation of religious and earthly bliss. I had seen it many years before and watched it through different eyes now. It is also a story about community and grace, two things we have learned a thing or two about. We put ourselves to bed once more without the supervision of our children. That too is beginning to feel normal.

Today, on waking up, my body feels as if a truck drove over it during the night. I woke up many times and could never get the right position; one that would not create great discomfort for one part of my body or another. This is of course not surprising given that I have been working all the offending/offended parts yesterday doing my many prescribed exercises. I also walked most of yesterday without any crutch. Painful progress?

I was heartened by the entry in the guestbook by Riitta-Liisa who wrote “the range increased every day and now I have forgotten about the surgery altogether.” My brain knows this is totally true. I have seen too many people over the last two months who have told me about their injuries and they all looked, walked and moved just fine. But my psyche doesn’t quite believe this talk and all this evidence. And on a night like this the journey is too tedious, the pace too slow, the view too constricted and the path too steep to be encouraged by a glimpse of the destination on the far off horizon or else be distracted by stunning surroundings along the way. It does remind me of my childhood vacations in the mountains of Switzerland and Austria and the early part of hikes that always went through the forest with its insects and heat, the sopping wet shoe because I misjudged the size of a brook and wondering (or whining) “how much further?” Of course all of this was soon forgotten once we broke out of the forest and reached the 1800 meter where the trees are gone and the views would make us forget the first part of the journey; where the slopes became more gentle and the destination visible at last.

Axel, on the other hand looked quite comfy and content with his pillows around him, his arm up on two pillows. He cannot move so if he is comfy he will stay that way; on the other hand, if he is not there is nothing he can do; the freedom to move is preferably to me but it has its down sides. Last night I had too many choices for sleeping and I kept making the wrong one.

Axel woke up given me a detailed account of his dream in which he was facilitating a group that was doing something mildly illegal as he remembers – maybe it had something to do with yesterday being international talk-like-a-pirate-day (no kidding, google it). Whatever they were doing he got them to talk together and solve a problem. With his eye and hand problems in the way of using his computer as a graphic designer he is reverting back to what he did before. Many of his conversations in the last week have been about facilitation and the skill of bringing disparate groups together to make good decisions that are supported by all and that will be implemented, in whatever setting, mildly illegal or not.

Axel had another grueling OT session yesterday and it took a good part of the day to recover from it. Rick drove him and they stopped on the way back at the Atomic Café in Beverly which I suspect will be forever associated with his OT routine; somewhat like the piece of chocolate I received as a child each time I had a vaccination. Bittersweet.

At noon time Patty Woodlock picked us up and drove us to the other side of Lobster Cove to visit our new neighbor Ellen Cross in the brand new and elegant shingle house. Ellen has her own foot Calvary which is as old as our oldest daughter. So we exchanged surgery, pain pills and physical therapy stories while Patty fed us her delicious blueberry muffins. We got a tour of the new house and admired the wonderful views, many of which included our house and beach.

I spent some time in my office catching up with my various teams in distant places who had responded to my “I am back” email by sending me reports on what they had accomplished on their own. Work-related emails are now coming in with greater frequency and require replies.

I had (foot) PT in the afternoon and was put on the stationary bike. I rode a bit more than a mile and started to fantasize about riding my bike again to Quaker Meeting in the near future. When I got home Axel had finally given in to his discomfort and popped a strong pain pill and took a nap. Ann Lasman dropped off two great meals (one experimental, she said, and we think she can put it in full production!) and we discussed next week’s meal plan. Ann advised us against going cold turkey and proposed a two to three meals a week to ease us off this our meals on wheels treatment that she, Sook and the calendar made possible the last month. Thank you all for serving us so well these last four weeks.

I have pondered a few times how I will know when to stop writing this journal. Someone said, well that should be clear, when you are all healed and there is nothing to tell anymore. Can our lives ever be like that, I wondered? Will they ever be so normal that there is nothing to tell? So normal that we would simply get up in the morning, dress, make breakfast, go to work, and all that without effort? In our slow journey of healing we compare today with yesterday and some days it feels like nothing has changed. And we quietly wonder, will we ever get there? Will this foot ever turn left, this arm lift up, these fingers grip, the wrist respond from a simple command from the brain?

When Axel got discouraged some days ago, his occupational terrorist, as he calls her endearingly, told him to not look for the kind of progress that is visible from one day to another because it wouldn’t be there. She reminded him to look two weeks back or even a month. It was good advice. We are encouraged by progress that shows up when we look at pictures taken in early August or even late July; or when a friend comes for a visit who hasn’t seen us for a month; or when we read a journal entry from long ago.

Yesterday I started physical therapy to help increase my range of motion in my neck and right arm. The PT takes measurements at the first visit to serve as a baseline. Baselines are good because they show that there is progress even though it doesn’t feel like progress. She sent me home with lots of exercises which, added to the ones for my foot, begin to claim a good chunk of the day, starting with exercises in the shower, followed by icepacks, heating the foot, exercises, more ice packs; then the hot and cold footbaths and exercises during, then exercises with my right upper arm, preceded by heat packs and followed by icepacks. Our refrigerator is full of these things, crowding out ice cream and other goodies and relegating our frozen reserve meals to the fridge in the basement.

Axel had blood work done in the morning to determine whether his iron level is back to normal and he can stop taking the iron pills which he detests because they constipate and they produce pitch black turds. The rest of the day Axel was quite busy and remarkably like his former self. He spent much time talking and writing with Jody Morse first, and Joe Sterling later about sustainability of towns, urban planning and the politics of economic development as applied to a small town (Manchester) and a big city (San Diego).

I sent off a series of emails announcing to my colleagues and leadership teams around the world that I am back in the saddle. I was heartened by their enthusiastic responses, not just about having me back but what they accomplished while I was out of the game. It is both worrisome and very satisfying that the work continued just fine without me.

Gail Gall came by at lunchtime with a lamb stew for dinner. She and Axel spent some time catching up on news about her career and kids as he was napping during her last visit. In the afternoon Axel went to Andrew’s house to work on computer stuff and in the evening he went to a meeting of the town democratic committee. I have a feeling that the time left open by his absence from school this semester will be filled with involvement in town development and politics.

I am waking up later and later these days. It was 7 this morning, a far cry from those early mornings in Augustus when the nights were uncomfortable and it was a relief that the new day had started and I could prop myself up with pillows and forget my discomfort through writing, at 5 AM or so.

Axel was already awake at 7, not up, since he cannot get up without help, but awake, contemplating the dreams of the night. He did a verbal body check on me: belly scar? OK, but still tender; right foot? Still tingling, still stiff; shoulders and neck? Stiff and itch under my left shoulder blade. Getting to the itch used to be simple but now my range of motion is too limited and I need Axel’s help. This requires maneuvering up to the pillow hedge and positioning myself within the range of his good (right arm). We are quite a sight in the morning. At least we already have an idea what things will be like if we live another 30 years together!

Axel is fasting this morning for blood work at the doctor’s in an hour, so no breakfast for him. I get him into his carapace and he is up and running, emptying my night bucket and his urinals, putting the icepacks back in the freezer, rebooting the router so I can post, checking his mail, and starting my coffee.

It is funny how, in our slowness, stiffness and with our physical limitations, we are living the life of people at the end of their life, rather than two who are just at the beginning of a new life that was miraculously handed to them. Being so dependent on each other as we are now has been an unexpected gift, our infirmities a reason for much tenderness, our vulnerabilities a source of joy. There is much laughter and much love in this house these days. There is also much pain and plenty of hissy-fits as Axel calls them, but the laughter and love diminish them and put them in their place.

My first day ‘back at work’ was uneventful. I have a list of projects I am to get involved in, some virtual work, some writing, and then catching up with our facilitator teams in Swaziland, Nepal, Azerbaijan, Guyana, Kenya, Guinea and Cambodia. It was a light work day and easy to combine with managing our care network.

Axel was driven to occupational therapy by our neighbor Ted and came back in considerable pain (this had nothing to do with Ted); unlike my physical therapy, which consist of ultrasound, warm footbaths and gentle soft tissue massage, his are heavy workouts during which much pain is inflicted. He had a therapy-at-home session with Paul and then puttered around the house while Jim and I went to the shopping mall to get some warmer elastic-waisted pants now that the mornings and evenings are getting colder. They are of course pajama pants or workout pants but it will have to do for now. Dinner, a delicious beef curry, was dropped off by Jody Morse who we had not seen for awhile; she and Axel had some time to catch up while I went to my PT session in town, driving to and fro by Debbie Black who was thereby relieving Jim and Ted of their driver duties. After dinner we watched an old Woody Allen movie that David Byer had lent us and went to bed at 10 PM.