Sylvia's Journal

I woke up to a rainy drizzle which is good for the new grass in the backyard. It is the kind of rain that is not good when you are feeling low. And although I did not sleep through the night this time, I am not feeling low this morning because my right ankle woke up with the rest of me more limber than yesterday. It was a little like Axel doing a double take when his fingers suddenly extended themselves in ways they had not been able to do before. I went to bed with a very stiff ankle and great discomfort along my belly scar and all that was miraculously gone. I have already written the alphabet twice with my right foot to make sure I am not making this up.

But then again, maybe I was making this up. While being distracted by Axel who needed some fine tuning of his position in bed, the ankle reverted back to is former stiffness and the belly scar became tender again. I have learned to accept that we are on a zigzag/up and down rather than a straight-up trajectory. As it turned out, my first waking experience was one of those leaps forward followed by regress. But I celebrate these small victories while they last and before they evaporate like many of my dreams.

If there is something that I learned over the last two months it is to recognize that there is poetry in experiences like this because it wakes me to my senses (body) and feelings (mind/heart) in ways I wasn’t used to before. Life isn’t straightforward or up and up and up (or backwards and down and down and down). It is as much a walk through impenetrable deep grasses that cut and obscure, or puddles that can swallow you whole as through flowering hills and spectacular mountain passes that take your breath away and make you want to fly. But these highs can be spoiled by sunburn, thirst and biting bugs while the lows can lift your spirits if you notice the small wonders that live there.

David Byer, our night nurse, treated us to a bagel and lox breakfast accompanied by music, gave Axel a shower and dropped me off at my therapist. He then took Axel to his appointment and they ended his night shift late in the morning at the Atomic Café in Beverly with coffee and talk. In the meantime I had an intense therapy session, making connections between my experience of the crash and other experiences in my life that were more similar than I had ever imagined. I am exploring and (re?)learning what being strong means and how to give form to all the emotions that are tied up in coping with adversity and examining early life experiences that served as my blue print and need some adjustments here and there. Cousin Barbara picked me up and left me at home with a bag of bars she baked and which she told me to cut in half (I did not and regretted this for about one hour afterwards). I had Beirut gazpacho for lunch, had my hot and cold footbath and read for a couple of hours in the sun. Later, Axel and I even tried to do some weeding together, each being able to do something the other cannot do; real team work but oh so very slow and largely ineffective given the scope of the task.

Jim returned from Western Mass, Sita emailed us from Shanghai about her first China experiences and Tessa clocked in at dinner time as usual. Jim’s mom Helen and Ed dropped of a wonderful dinner which Jim embellished with some grilled veggies from the garden. I went to bed at 9 PM while Axel puttered around the house until the wee hours and put himself to bed leaving his brace on. Which caused the interruption during my writing this morning (he wanted it off) and led to the reversion of my ankle fortunes and thus to my musings this morning, showing once more that everything is linked to everything else and nothing can be interpreted in isolation.

I woke up with a cough just as I was about to put a Dutch delicacy in my mouth (roggebrood met kaas). Darn! In my dream I had just managed to exchange a slice of American bread for a slice of this traditional Dutch (rye) bread and I had found the right cheese to put on it. I was at some large gathering that included many hungry (American) children who had not been fed their school lunch. The mother with whom I did the exchange was as happy as I was because her child would surely reject the funny looking bread.

It was probably just as well that I did not get to taste it because I am not allowed to eat anything until I have a CAT scan later in the morning. I am two drink two bottles of barium instead. A lousy exchange!

The CATscan has been ordered in order to figure out why I am having these pains around my belly scar. The piece in my belly button that feels like gristle is probably the tail end of an internal stitch that got irritated and hasn’t dissolved yet. Apparently it takes months for these stitches to be absorbed by my body. The doctor compared it to a pimple and assured me that if it bothered me it could be taken care of easily. He was more concerned about the other pains. So today was supposed to be an appointment-free day but I am off to the hospital with neighbor Ted as my chaperone and driver.

Sita left at 4 AM for the airport and is hopefully on her way to Chicago now and then Shanghai later today. Now that she is so intimately involved in our life, these partings are difficult. I was moping around yesterday a bit the way Axel and I mope around when one of us is leaving on a trip. We are all joined at the hip now.

Our friend Lynndsie came down from Amesbury for the day and started driving Axel to his appointment at 8:30 AM, followed by a shopping expedition. After that she did what she pays someone else to do in her own house and cleaned and laundered most of the day until it was time to drive me to various appointments. Lynndsie put new sheets on our bed. For the first time in more than two months our two sides of the bed matched and this made our bedroom look less like a calamity hideout. She did try to hide the multitude of pillows with assorted (and non-matching) pillow cases as that would spoil the effect upon entry into the room. Now, after a night of sleep, I am afraid the effect is gone but we are still appreciative.

Andrew came by in the afternoon to help Axel finish the set up of all his graphic design equipment in his temporary office. Carole O’Neil dropped off two meals that will see us through Thursday night. Axel went out on the town last night to attend a meeting of the Planning Board. He managed to stay throughout the meeting and came back tired but in great spirits. He too is easing back into the world.

A restless night with so much movement (foot inside the box, outside the box, on the ice, under the ice, blanket on, blanket off) that I woke up exhausted. I am trying to grasp the wispy ends of dream shards and the ones I catch make no sense.

The cove is luminous again after having been wrapped in shrouds for the last few days. The new green and brown shingled top floor and dormer of what used to be the ugly yellow flat-roofed house across the cove looks picture perfect and inviting. Axel is still sound asleep amidst the jumble of pillows and blankets. I gently massage his giant scar and he stirs a little but doesn’t wake up. He has another half hour before he’s off to the races and get ready for his trip to occupational therapy.

I too have a giant scar, maybe about the same length, up and down my belly. It has been bothering me lately with some sharp pains along the side for an inch or two. It hurts when I stand up and stretch my belly muscles. I called the trauma surgeon, a wonderful South Korean woman with the best bed-side manners I have ever seen in a surgeon. She is the one who cut me open after my X-ray showed some ‘free air’ in order to rule out any internal damage. I had the bad luck of not having (surgeon) Morsi by my side who saved Joan from this ordeal, as it was not necessary. The difficulty for non doctors like me is to distinguish between procedures that are done to protect the doctor or hospital and those that are done to protect the patient. And so it was done.

My belly button in particular is a twisted mess. I asked Sita to feel a part that concerns me. She thinks a staple or something hard was left in below the skin. To me it feels more like a piece of gristle, but what is it doing there? Next time a doctor comes for a visit we’ll ask for a first, second and third opinion. We hope it isn’t a piece of surgical equipment that was left inside.

Yesterday was mostly another quiet day, at least for me. I spent much time continuing sorting out stuff, being put on hold and checking things off my to-do list, while Axel went out frolicking with Chuck Kennedy in Beverly for lunch. They came back mumbling about lap dancing and three martini lunches. Before that Chuck helped me with my hot and cold footbath and between the two of us we managed to give the floor a good bath as well.

In the evening we were the bringers of dinner for a change. Sita and Jim dropped us off at Joan and Morsi’s in downtown Boston and then went off to get a take-out dinner at a local restaurant. We had a wonderful visit during which we compared body parts, movements of body parts and talked about our respective recoveries while we feasted on a delicious spread of Thai dishes. We also talked about how we had changed (or not) and what we had learned about ourselves and others. I am so immensely grateful that all of us will be all right, eventually. We all know it will take some time.

We left a little after eight to return home. It was the biggest trip we had made in 8 weeks and we were both exhausted. Back home Sita shooed us straight to bed. Axel tried to sneak into his office but Sita caught him and directed him to the bedroom. She’s a tough one!

Today’s date cannot be typed in like all the other days without thinking about New York. It’s a loaded date, forever associated with doom and gloom against the background of a radiant blue fall sky. Today at Lobster Cove it is a dreary, overcast and humid day which may explain why every muscle aches. In the afternoon Sita and Jim will drive us into Boston to visit Joan and Morsi for dinner. We will be in a high rise. Funny I picked this day of all days.

Yesterday I graduated to walking with one crutch, with doctor’s orders to proceed to full weight bearing on my big black moon boot. The physical therapist predicts I will be off crutches very soon. She worked on desensitizing my right foot by alternating hot and cold footbaths. I am to do this daily. The feeling has started to come back in my right heel; very slowly just a few millimeters but I notice the difference. My right toes are still tingling and the sole of my foot is still without feeling. I slept last night without the cardboard box under the sheets to see whether my right foot could handle the constant stimulation of sheets and blankets. I think I’ll put it back in its box tonight. It gives a whole new meaning to ‘thinking out of the box.’ For now I prefer thinking ‘inside the box’ and shielding the poor thing from all this stimulation.

I spent yesterday morning reading all the news I could find on the internet about a small single engine plane that went down at Mansfield airport south of Boston with four men. The pilot and co-pilot died; the two people in the back survived and are now in the ICU of two of Boston’s hospitals. I wrote each a long letter. These two men have just embarked on this long journey that we know so well now. We thought about their friends and family being alerted, the anxiety and crying, the pain, the bills, etc. I wrote each about Caringbridge and offered my support. But their journey will be very different. I cannot begin to imagine what it is like to survive when you know others died. I am thinking about them a lot.

Axel and I each visited our physical therapists and worked on recovery and extending our reach. We also had our weekly massages, expertly delivered by Abigail Axelrod who spends so much time with us that she is practically part of the family. Sita also lined up for a massage, badly needed after her strenuous 3 days of working in New York.

A good chunk of my day yesterday was spent on administration, sorting out bills and co-payments, studying the BCBS website and lining up a new dentist. I am also responding to emails from work and preparing myself for my first very modest assignment which is a ‘pre-mortem’ of a proposal we submitted to the Gates Foundation to strengthen senior health leadership in several East African countries. My increased energy and mobility combine to have something close to normal life visible on the not-too-distant horizon.

Our meal was brought by Carolyn Britt from Quaker Meeting who had cooked us a delicious vegetarian pasta dish and brought us some tomatoes from her garden; Katy-Blair had stopped by earlier to give us a batch of mussels left over from her Italian feast over the weekend. All this combined into a wonderful meal. After dinner Axel and Sita went to drop off a book at a friend’s house while I tried for the first time to put away dishes and clean up. For this I had to put my boot on and use my one crutch. It took forever but I managed OK accompanied by Tom Ashbrook chatting with Garisson Keilor on the radio.

The new replacement plane appeared in my dreams. It looked very much like a Fisher-Price toy plane and could land straight down on a narrow strip between the trees. It did not need a runway. In my dream I was expecting a much sleeker and faster plane, like one of these corporate jets but I liked the way my new plane landed.

Not in my dreams, but in real life, I got myself a new aviation headset on e-bay. It is my ankle that is keeping me from flying but not much else is holding me back. It seems that I am coming towards the end of one chapter and about to begin a new one.

The dream was not so surprising because Arne from the Beverly Flight Center emailed me that a team of two is off to Columbus Ohio this week to check out a candidate to replace our wrecked plane. If it checks out well they will fly it back. I think I see a little outing to the flight center in the near future.

Yesterday was another rough day for Axel. The humidity affected us both but Axel had to take pain medication throughout the day and needed a long nap. He was not quite able to do what he had set out to do but he enjoyed the quiet time and not having hordes of people over. Groups of 6 or 7 people, as we have had for dinner two nights in a row, are enjoyable to all of us but I am noticing that they totally exhaust him. A quiet visit with one person works better for him.

Cynthia picked me up for Quaker Meeting after we had a wonderful bagel and lox breakfast with our night nursing team, Joellen and Phil. They agreed with Katy-Blair and Andrew that night nursing was a pretty good deal.

Katy-Blair came by to get a pan to cook mussels for her 7 Italian guests and quickly folded the laundry while she was at our house. A little later Martin Imm showed up to drop something off and we had another nice chat. Axel missed both of these visitors as he had gone to bed again and did not wake up until Susie Wadia-Ells arrived to continue the laundry, do errands and other chores. Last time she came she brought Joe the healer, this time she brought something else to help us heal. Everyone is rooting for us!

Sita and Jim came home early. While Sita was working at the Girl Scout Leadership Conference at Briar Cliff Manor north of New York, Jim had gone into the city at what may have been the hottest day of the year. They decided to come home early and skip the planned visit in the evening to friends who live in New York. So we canceled night nurse Edith and pulled one of the frozen gourmet meals that my colleagues at MSH had given me from the freezer. We watched Sunday night mystery on TV while Axel was multi-tasking like his old self and attending to Tessa’s computer needs in far off Canada.

We talked several times with Tessa over the weekend to follow her installation in her new home. She had baked cookies for her new neighbors in rural Lucan. Tessa has learned a lot about networks and relationships this summer. Her neighbors are all farmers living with their extended families and have been there for ever. She reported that the visits went well. We are happy that she and Steve are off to a good start.

This is the first time I am waking up to a dark sky and a thunderstorm brewing not far away. It can’t always be the gorgeous summer weather with the sky pink and Lobster Cove sparkling. A vague feeling of dread transports me back to my high school years, after the first school days are over and the excitement of seeing friends again and exchanging stories and comparing tans has taken place. It is that feeling that next Monday, when you wake up and say, oh, school again and the next vacation seems so very far away. It felt like that waking up this morning.

Through the night, and even more so on waking up, my body is aching all over, shoulders, hand/wrist, upper back, left and right arm and of course always that right foot. When people see us again after a few weeks they always say how much we have improved and in some ways we have; but the line is not always upwards and in our day to day experience it sometimes feels as if we move 1 step forward and then a couple backwards; the sense of improvement will come from seeing a doctor or therapist who hasn’t seen us for a couple of days, weeks or a month and who proves that we are getting better because they took X-rays or measurements earlier and we can see the difference. But the aches always seem to come back.

After having completed his night nursing duties Andrew took off before we even saw him but Katie Blair carried her duties far into the day. Kathleen from MSH came over in the morning from her home in Salem and stopped by the Atomic Café to get us coffee and pastries. Katie Blair and Axel made a chard (from the garden) frittata and together these ingredients made for a wonderful breakfast with wonderful people. After Kathleen had left Katie Blair and I examined the garden and harvested beans, squash, spinach, tomatoes and carrots. We left the peppers and eggplant to grow a little longer.

Sula and Jacek stopped by to check in on us. While the rest of our part of Massachusetts suffered record temperatures we enjoyed a cool breeze sitting overlooking the cove. When everyone had left we settled for several hours of quiet times; Axel went upstairs for a long nap and I settled into my chair hammock and finished another book.

When the tide was low Roger and Sook came over to hunt for mussels and caught a few after which Sook set out to put finishing touches on the meal she brought. The night duty nurses Joellen and Phil arrived a little later with complements to the meal. A tired Fatou emerged in the middle of the thunderstorm, returning from work in Brookline, to check in on us and fell, as we say in Dutch, with her nose in the butter, or rather a great meal and fun company.

After dinner and clean up Sook, Roger and Fatou left. Joellen and Phil helped move lots of items from the upstairs refrigerator to the downstairs, making room for a whole new week of meals that have announced themselves on the calendar. I gave Axel a shower and was able to do much of the bedtime routine, leaving only the final touches (ice packs) to the night duty team.

Every morning when I wake up I lay still for a few minutes trying to hold on to the bits and pieces of my dreams before they scatter away like butterflies. I caught a few of them this morning. I caught the ones that were about walking to some event. I was carrying folding chairs, one of them of the beach chair variety and the other much larger and heavier. The walk was up hill; the chairs were a drag, bouncing in back of me. We never used them. But the thought of having them was comforting. There were also walks after the event, still with the chairs; while other people went to a restaurant to eat or have coffee, we went for walks with our chairs.

The chair has become a symbol for my recovery; it is the safe and warm place in the middle of things. In real life my chair is a recliner which we bought some 20 years ago for Axel’s mom and had kept stored in the attic after she died. We had actually just given it away a month before the accident but it had never been picked up. This is the recliner in which I sat and read some 10 books in 8 weeks (we are crossing the two months milestone today!); It is where I drifted in and out of a narcotic sleep my first week at home; It is where I struggled with my Oxycontin withdrawal symptoms and curled up, miserably; it is where I sit and receive our many visitors and the gifts they bring; it is where I do my exercises for my right foot and ankle, writing the letters of the alphabet, doing heel-toe-heel-toes’s and trying to grab a towel with my toes (so far without success); it is the place from where I manage the calendar and read/write emails, sort the mail, make and answer phone calls, write thank you notes and checks. It is the center of my life.

Axel has not used the big recliner chair much. He has difficulty sitting still and focusing on one thing when there is much going on around us. He has an antique wooden chair with spindles in his office upstairs and he sometimes goes there, but I don’t think that for Axel the symbol of his time at home is a chair. He used to be able to sit for hours and read or sit at his computer. This has now been replaced with a constant level of activity; starting this, then stopping it abruptly; sitting down and within seconds getting up again. His inability to concentrate and finish something it is not a new phenomenon. We used to laugh about it. Now it worries me because the notion of a scattered brain after a plane crash is not funny anymore. The double vision is one manifestation of his concussion, but sometimes I think this inability to sit quietly in a chair is another.

We had two visitors from Newburyport yesterday, Anzie and Leslie. Anzie took Axel to the doctor to check out his puncture wound which has been slow in healing because it got infected. After that we sat by the cove in pleasant fall weather while the rest of the world was coping with 90 degree heat. Axel never joined us as he was trying to retrieve his medical records from Shaugnessy. We think he finally succeeded but it took most of the day.

At the end of the afternoon Ellie and Rick showed up with our meal (we want the recipe!); Gary Gilbert showed up a little later to finish the refrigerator exchange and Rick got literally roped in. The newest refrigerator is upstairs (much to Sita’s dismay as she doesn’t like it and she is very stubborn about it), our 14 year old fridge is in the basement and the old avocado colored one from Axel’s mom has gone with Gary the way all refrigerators eventually go. Fatou can start to bring on her huge African meals again (just kidding); we have the space now.

Andrew and Katie-Blair, reporting for night duty, had a quick dip in the cove and Andrew helped Gary with the final touches of the fridge exchange. We had a lovely dinner and left no leftovers. We were tucked into our beds and did not have to call on our nurses during the night.

We are doing a lot of work these days. I don’t mean house work, that too is happening but we are not the ones doing it, nor is work that produces a salary, although I am starting to do this very modestly this week. Our work these days is working our bodies. Axel has already been doing increasingly intense physical therapy with his left arm. I started physical therapy yesterday and I am busy working my right foot, ankle, Achilles tendon and hamstring; hard work with very little progress at first. It also is not the kind of work that you can check of a list, since it is, for now, without end. We are also tending our bruised and damaged nerves. My right foot nerves appear to be in a perpetual heightened state of alert, as if I am still in the middle of the accident. Sita constructed a safe haven for them using a cardboard box. When I go to bed now I put my right foot inside the box and it protects it from the weight and constant stimulation of sheets and blankets moving this way or that. It looks like a small animal shelter, with soft bedding and a roof.

One thing I am learning is that even very small amounts of wine do not go well with all this work. We are very tuned into our bodies and mine was protesting last night. I got the message; back to milk.

Abi came yesterday and gave both Axel and me a light massage called zero balancing. I emerged very relaxed to find that my (ex) colleague Chuck had arrived for ‘odd jobs’ and a chat about his future. He brought all sorts of goodies as well and moved the large piece of plastic to cover up the backyard weeds that had sprung up around it. While I was having lunch we talked about his next career move.

Arne, the director of the Beverly flight center came by to drop off the insurance papers so I could finally see what I am covered for and read the small print. We talked about accident-prone pilots and old stories about other plane mishaps; I am now part of a community of people who have crashed and got to tell the story. The check for a new plane is apparently in the mail and Arne is looking at a few good replacement candidates. When I am ready to fly again, there will be a shiny new (used) plane! With three accidents in his fleet (all during the Mercury in retrograde period!) he is doing a lot of business with the plane insurance company. We too got a call from our case manager in the morning and he has been very responsive and solicitous.

Axel’s and Jim’s big accomplishment for the day was getting a new inspection sticker for our car after ours had expired. This is one worry to drop from the worry list. After that they went for a ride searching for a good chunk of red meat which Axel had been craving. When they came back home Jim and Judy Wiegel arrived. We were on their camper route from Arizona to Newfoundland and back. Jim and I reacquainted last February at MSH in a leadership program and this time I got to meet his wife Judy. They are what I call ICA (Institute for Cultural Affairs) old timers; we have many friends in common as well as a general philosophy about how to work productively with groups to make the world a better place. We had a wonderful dinner together and discovered that Judy may have been in the same high school class as Jim’s dad. We also got our best friend Anzie (Dodge) from Newburyport on the phone with Jim; they worked together for ICA in the 80s. These overlapping circles don’t surprise us anymore. Even America is a small place!
Tessa called from Canada with a progress report about her nest building and her classes and all is going well. We saw the picture and noticed that she lives in a house that most of us don’t get to live in until we are well into our middle age. It seems to spur Sita on in her internet search for where to live after mom and dad can be independent again. She is looking for north in Maine, dreaming of a house on the water, while Jim rolls his eyes.

We are still looking for (light) night duty nursing on Saturday and Sunday (and possible tonight) while Sita and Jim are away. Anyone out there able to move in for a night, or two?

I woke up this morning looking out over a luminous Lobster Cove, lightly touched by the first sunlight of the day. The words ‘spiraling from the center’ were playing in my mind like a record that is stuck. Did it come from a poem I was remembering? I have a poetry database that contains some 200 of my favorite poems which I use in my teaching. I created the database myself after having taken an online community college course on databases, a few years ago. It was a basic course and thus my database has no search function, so I could not plug in the line to get to the poem. Instead I went about my search by hand. A few poets came to mind, Rumi? e.e.cummings? And this is how I stumbled on e.e.cummings’ poem that now has a different effect on me than it had before. It did not contain the line about spiraling from the center, nor did any of the Rumi songs that I know of.

I still did not want to give up on the spiral line and searched on Google. It only gave me entries on labyrinths, witches circles, Dervishes and even a youth group in Connecticut, who seem to have in common that they dance and spiral into – not from – the center. I gave up on the search and went back to the cummings’ poem because it had touched me in a profound way, especially with the cove shimmering in the morning sun and me and Axel alive and on the mend.

i thank You God for most the amazing
day; for the leaping green spirits of trees
and a true blue dream of sky; and for everything
which is natural which is infinite which is yes

(I who have died am alive again today,
and this is the sun’s birthday; this is the birth
day of life and of love and wings;
and of the gay great happening illimitably earth)

how should tasting touching hearing seeing
breathing any – lifted from the no
of all nothing – human merely being
doubt unimaginable You?

(now the ears of my ears awake and
now the eyes of my eyes are opened)

Axel went on a trip to the Mall with Andrew, which included a trip to the Apple Store (this is even a treat under normal circumstances) while Jim re-charged the battery of our dead car and Sita did the laundry. Ann Buxbaum and Naomi Blumberg drove up from the city and immediately set to work cleaning the kitchen and bathroom after which we had a wonderful lunch and a long chat by the Cove. It was a lovely visit and there was much catching up to do. I had not seen either of them for a long time. Our neighbor Jackie Hooper joined us for a while. The last few weeks have all been what we call 10+ days even though the grass is dying and the trees are already beginning to turn.

I finally had a talk with our lawyer to understand better what I should and can say or write and what I should keep to myself and he helped me formulate the questions to ask the plane and the health insurance companies.

Axel had a rough workout with his occupational therapist in the afternoon and returned home looking drawn and exhausted. We packed him up with ice packs and pain pills and settled him in the recliner. Cynthia from Quaker meeting brought us dinner and a copy of a Bill Moyers’s tape on impeachment which we watched after dinner. The tape features a conversation between Bill Moyers, a constitutional lawyer and a journalist who are trying to wake up Americans to the fact that they are being ruled by King George rather than President Bush.