Sylvia's Journal

Now that Labor Day is over I am acutely aware of how we are sidelined in daily life. Back to school is the central activity in this country today but it extends also to ‘back to work’ and back to normal non-vacation life. There is much activity associated with the realization that winter is approaching.

Our condition does not let us partake in all this activity. And although we may be in the center of attention for many people, we both feel sidelined because there is so little we can do ourselves in terms of participation in the world. It reminds me of the biblical story of Jesus’ forty days in the desert. The desert in the bible is a place of encounter, renewal and testing and forty days usually stands for a period of great transition in which endurance, patience and faith is put to the test. The two go together as a place and a time.

Much has been tested; our bodies are still in the middle of the test and so are our minds. We have a ways to go before we can put our pens down and get up and walk out feeling we passed it. The results of the test of our friendships are out: they are as robust as we could wish them; and so have our social networks which have shown to be powerful and resourceful beyond expectation. Most importantly, this has been a period that has tested our daughters and they have shown to be everything that we could have hoped for in our wildest dreams. We could put our heads on our pillow and say we are done if we wanted to. We have delivered to the world two very loving, caring, resilient, creative, resourceful, strong and caring young women. We suspected this already, but now we have proof. I suppose it also has been a test of our love for each other; that was the easiest of all tests for us.

We are not yet at the end of our symbolic forty days and so the test continues. Our faith is intact, so far all our tests have gone well and the rest is a matter of endurance.

Yesterday was characterized by much pain, tiredness and in the morning the day seemed too long and too complex to manage despite the modest objectives I had set for myself (the mailbox got down to 12 emails). Axel had to resort to pain pills and me to hot packs on various parts of my body. And yet it was a gorgeous late summer day. I sat outside and read, hobbled around the garden and discovered that the bean plant is finally producing. We had only a few visitors and phone calls. Jacek came by to check our progress since early August and Axel’s cousin Pam from Oakland came by in the evening with her husband Courtney after a weekend in Franconia where they had spread the ashes of her younger brother Eric who died unexpectedly last November. We had planned to be there with them. Her visit was a close as we could be to the event.

Although there was no meals on wheels delivery planned on the calendar, a meal was delivered spontaneously by Deb and Tim who live in town. Deb brought us a wonderful chilly with all the trimmings that served exactly the number of people who showed up at our table.

Sita passed the baton to night nurse Jim who did a good job putting us to bed, while she tended the fire on the beach with the house phone in her pocket just in case.

The nights have become restful again and largely uninterrupted, and all that without the help of pills. I am no longer dreading the end of the day. The going to bed routine has also become easier for Axel. There is less anxiety about getting the pillows right. His elbow infection (it turned out it was an infection) is being treated with antibiotics and a plastic cup taped over it to keep the pressure off at night. His movements are still restricted when he is without a brace (only when he lies down or sits in the shower) and this is likely to be so for another 5 weeks. His pelvic fractures have healed and his rather splintered humorous is nicely growing back together with the help of a rather large piece of hardware and what looks like two drywall screws. His enormous frontal scar is healing nicely and his curly hair is starting to grow back. Clearly, skin and bones are the easy part of our recovery.

It is going to be the nerves that will take a while longer. Parts of our skulls don’t have full feeling yet; Axel’s left hand and wrist will need a lot of work and the sole and the toes of my right foot feel like they belong to someone else. But our various medical caretakers keep telling us everything will eventually heal. It is a matter of time.

Of course everything is a matter of time. Now that we are on the mend my horizon starts to expand. I even fantasized about accepting an invitation next week to join a delegation of Chinese AIDS program officials at a reception at Harvard. Logistically such things are still a bit too complicated so I did regretfully decline. But I am definitely thinking about an excursion in the next couple of weeks to see Joan and Morsi and maybe even swing by at work.

I suppose this is a good sign, this looking ahead. It is definitely more like the pre-crash me. Sometimes my mind even starts to wander as far ahead as the end of 2007 and I wonder where we will be then. Will we be driving? Will I be traveling? Will Axel be able to eat with two hands? Will I be flying? May be yes, maybe no.

Yesterday I went to my first Quaker Meeting for Worship since July 8. Sitting in silence was more difficult than I had expected as something kept pulling my mind back to the crash and nothing was still, until Cynthia spoke about stillness and the silence became easier to bear. It was nice to see my dear F(f)riends again after so much time. Afterwards, two of them, Martin and Paul, took Sita and Jim for a sail out of Manchester harbor. Sita’s face was still glowing in the evening from the combination of wind, water and sun.

We visited Jim’s mom and his extended family for a traditional Labor Day get together and returned home for a quiet read/nap. Katie Blair and Andrew came over and cooked us a late summer’s harvest bounty meal. Tessa called from her new home and we put her on the speaker phone so that we could pretend she was sitting at the table with us. Andrew helped Axel with his shower. He and Katie Blair will take up night nursing duty next Friday and got to see some of the evening routine while Sita and Jim settled in for a much longer evening with their friends Brian and Fred.

On of my new goals for this week is getting back as much as I can to ‘normal.’ Normal means having a bedside table that doesn’t look like it belongs in a hospital. Normal also means using my clothes closet again rather than the basket under my bed with the 3 drawstring pants and the 3 Tee shirts I have been wearing for the last 7 weeks. Normal means cleaning out my email box daily and starting to read attachments that come from work. Normal is also on Axel’s mind. It means taking more responsibility for paying bills and household administration, for small household tasks that don’t require bending or twisting his spine. And today normal means going to Quaker Meeting for the first time since July 8.

But this is where ‘normal’ stops. Our bedroom still looks like a hospital, with its pee bottles, commode, pill bottles, skin lotions and occupational therapy contraptions (old and new) and piles of pillows littering the place. Our helplessness at night is still complete. Our furniture still needs to accommodate the wide passage required by my wheelchair. Our estate management, including gardening, repair and winterizing, will have to remain in the hands of others. The meals on wheels arrangement is still much appreciated as it relieves Sita and Jim from having to think about cooking and shopping, something still entirely beyond our abilities.

Yesterday we all piled in Sita’s car and went on an outing to the bank and then to the Atomic Café in Beverly, stopping at yard sales along the way. I stocked up on yarn for the winter knitting season. We must have been quite an apparition, me with my crutches and moon boot and Axel with his turtle shell, his squinting eye, his rehab cane and his enormous scar. But no one asks or says anything and there weren’t any innocent little children about who would feel free to ask or stare.

For anyone who knows where we live it is probably hard to imagine that we would voluntary leave Lobster Cove to go sit on a sidewalk drinking coffee on a busy street in Beverly on a gorgeous late summer day. But for us it was a treat: great coffee and being out in the world (yes, Beverly!).

We returned home and were soon joined by Sallie Craig from MSH who brought a great loaf of bread, fresh fruit and a huge tube of skin cream for my recovering leg. She then set to work vacuuming the house and doing laundry. She sat outside to recover and read until a seagull crapped on her, while Martin Imm quietly went about fixing more things and finding new projects around the house. We will never be able to let him go. In the meantime Axel did what he should be doing every day, taking a nap, and I tried to sort out stuff I had postponed for weeks and which required some serious thinking. This is something that is still a challenge for Axel and me. Our heads were severely shaken seven weeks ago and we are trying to get them back into gear. These steps to normalcy give us a small measure of control and a sense of accomplishments that is outside the physical realm.

Tessa called from Canada with an enthusiastic update about her new home and the progress in settling in (bank account, phone line, etc.) We still miss her a lot and the feeling is mutual, but at least she is with Steve. We had a family meeting with Sita and Jim about running our ménage a quatre and planning next week. They are both going to be in New York next weekend (from Friday September 7 through Sunday night the 9th) and we will need someone to spend the night in our house for those three nights. Let us know if you are available for light night nursing duty on these dates.

A part of us left yesterday. Tessa returned to Canada to go back to school and have a few days to move into her new home with Steve. She cooked us pancakes for our farewell breakfast and even Sita and Jim woke up early to be part of this. At about 10:30 she drove off in a fully loaded car. Everyone was crying.

I keep taking my right leg out of its big boot. I can’t get enough of the sight of it; even though it isn’t all that good looking, with several dried blood blisters and flaky skin. It is great feeling each time to liberate it and feel the air around it. I set up several appointments with the local physical therapists and I am anxious to start exercising.

Axel has a new regime of hand exercises. He wears a sort of Michael Jackson glove (a right-handed beige Isotoner glove with the tips cut off). Yesterday he came back from his occupation therapy visit with a contraption for his hand that looked like it came straight out of ‘The Bionic Man.’ A plastic mesh brace with little cloth rings around each finger that are attached to elastics which he can play like a guitar. They pull his fingers up, something he still cannot quite do himself. They are a very creative bunch these occupational therapists from Shaugnessy.

I went to see Ruth for my first emdr session. We established home base by exploring the notion of ‘safe place.’ It was interesting how my current recliner chair emerged as a safe place during this period. It is the place I go to when something hurts or when I get tired. But it is not just the chair and its reclining mechanism that makes it safe; it is also its location, which is ‘right in the middle of things.’

Andrew picked me up and completed a bunch of things from the Task list on our Airset calendar. Soon Martin Imm joined him and did the same, completing more complex fix-it jobs, and then Gary Gilbert pulled up with a nearly new refrigerator which he offered to us. This has by now become a familiar pattern: before we even have articulated a need, someone drives up and fulfills it. Given our recent experiences with other appliances in the house, exchanging refrigerators seemed like a good thing and I accepted the offer (for which I am getting a lot of flack from Sita and Jim who, unbeknown to me, developed an emotional attachment to what is now called the old refrigerator). The arrival of the nearly new refirgerator created a new frenzy of activity (bringing it in, taking food out, putting food in, taking the old one out, etc.). Axel and Alison returned from his OT visit just at that time. He had expected some quiet time at home but instead tumbled into the refrigerator exchange activity which filled all the horizontal and vertical spaces in the kitchen. It was good foresight that Andrew had started to set up Axel’s office in one of the spare bedrooms, with his computer and printer. It provided Axel with a space to escape to when there are too many people and too many activities going on downstairs.

Alison, Martin and Gary partook in the wonderful French dinner that was brought to us by Carole Moore earlier in the day: French bread, sausage, various French cheeses, salads and chocolate. We added a great bottle of wine which Tessa had forgotten to put in the car and Axel spent about 2 hours sipping his one small glass with great delight.

And then suddenly the house emptied as quickly as it had filled up. Alison returned to her Cape Cod life, after spending two wonderful days with us, doing chores, shopping, driving, and regaling us with the best stories about her old and new life.

We are very grateful that Sita and Jim are still here. We watched an episode of Foyle’s War and went to bed around 10. We tested our new phone intercom at about 3:30 am for a small night time emergency to which a sleepy Jim and Sita responded with patience, love and care

Friday, August 31, 2007.My cast went off yesterday. Out came a not too shriveled leg with actually some muscle tone left. I had not dared to hope this outcome of the visit, but the X-rays showed that my ankle break had healed quite nicely.

Alison accompanied me to the doctor who looked like he got right out of school (but so handsome said Alison, who has a special eye for this sort of thing). The first part of the visit was a little unnerving as he cut the cast with an electric tool that looked like a circular saw (and probably was a circular saw). The noise instantly transported me to the moment we were cut or sawed out of the plane and brought back all the fears I had then of being hurt by any of the extraction equipment. I started to sweat profusely and tensed up. It was good Alison was with me. She tried to distract me, massaged my shoulders and gave me periodic updates on how many inches were left. The cast was cut open on each side and then gently removed.

Now I have a black contraption that looks like a snow boarding boot. I can take it off whenever I want as long as I don’t move around without it. I can even start to put some weight on my right leg as I hobble around with my walker. I took my first bath in 7 weeks and this night I slept with my leg in its natural state. My foot’s nerve endings are not yet fully functioning and my toes still have the pins and needles feeling. The bottom of my foot feels like cardboard and of course the entire foot is very stiff. Thus the sleeping remains a little problematic and I am still resorting to the Tylenol with Benadryl to get a good night’s sleep.

My progress these last six weeks has been awesome and my body starts to look pretty normal without its black and purple bruises, scans, stitches, bumps and cast. However, it doesn’t quite feel normal between tenderness, stiffness and limited range of motion. So the next few weeks will be filled with physical and other therapies.

Yesterday we studied and tested out our new phone system while Alison did a million little household tasks. Tessa packed and mulled over what to take back to Canada and what not and Sita and Jim were gone the entire day packing up last loads in Amherst. Martin Imm came by to fix another set of things that had broken and I managed our appointments and re-arranged kitchen cabinets so that they contained, once more, the things we used to store there (and no more). I can find things again and made some discoveries in the process.

Susie Talbot gave our garden a good trim and clean up and we sat and watched her on that gorgeous late summer afternoon. Caroline Spang came by to say hello and we drank tea sitting between the raspberries (now gone) and the squash plants (still producing energetically). Ed and Helen brought a wonderful meal and we had a quite dinner with Tessa and Alison. Later Tessa’s friend Val came by to say goodbye. After that Tessa got to give Axel his last shower. It is all bittersweet and the departure looms large.

The bedtime ritual was enhanced this time by Alison’s rendering of Faye Dunaway in Little Big Man (?) as Axel was disrobing and put to bed, one last time, by Tessa. We hope and expect that when she returns from Canada later this year, he can do all this by himself.

Yesterday something familiar entered back into our lives. Small things begin to irritate us. Small words, small sentences and small inferences of intentions. They were like little grey clouds that drifted across the sky and blocked out the sun. Although there was still abundance that kept love and other good things coming to us, we got distracted by the things that we could not do or that did not happen. It felt eerily normal. This is something that we recognize from our pre-crash lives (our first life). There were moments yesterday that we got so obsessed with the absences, the holes, the vacuums, the negatives that we had no energy left to see and appreciate the positives, the presences, the gifts.

Is this the normal that we are aspiring to get back to? After all, says a small voice inside my head, it can’t always stay this good. Or is it the anxious anticipation of Tessa’s departure? Or maybe it is the stress that rubs off by watching Sita and Jim as the finality of their (temporary) move to Lobster Cove sinks in, now that August has come to an end and all their stuff from Amherst has to be moved. It is coming in by the truckload and no one knows where to put it. We are overflowing with stuff.

Even the morning routine of getting up, taking a shower, and making breakfasts was more difficult yesterday than other days. Axel found me in tears and there was nothing I could do to explain them. It just felt too much, too long, to difficult and too overwhelming. Later in the day we both struggled as we were looking for things that weren’t were they used to be, or found things that were where they shouldn’t be. And when we cannot do anything about it because of our physical limitations, the stress and frustration levels mount. At one point Axel stomped off to bed upstairs, which seemed like the only safe place to get away from everything; I found solace in a book about people a world away who have nothing going for them.

But even yesterday there was abundance and there were many gifts and writing my daily journal makes them stand out from the darker background. Alice Gardner from Quaker meeting showed up with lunch and we talked about writing and illustrating children’s books and her upcoming trip to South Africa. Then the new phone system got dropped off which will allow better ways of communicating with Sita in the barn once Tessa has left and no one else is in the main house during the night. It features an adult ‘baby’ phone among other things. This required a call to the electrician to re-direct telephone wires. Bill Wilson showed up within the hour (we are getting quite used to calling repairmen and have them show up instantly) and spent a couple of hours finishing the job. The phones are ready for use now.

For dinner we had Tessa’s boss D.J. over with his new pal Susan and Alison (from the exciting ‘A Summer on Cape Cod” reports in the Caringbridge guest book). Alison is here for the next two days, which, given the stresses we are experiencing, is perfectly timed. Her presence will allow the girls to focus on what they need to do without having to tiptoe around their vulnerable parents.

Dinner consisted of a delicious Causeway Restaurant (in Gloucester) meal: the fish chowder was dropped of the day before by Carole Rein and D.J. had brought Calamari.

I have noticed something about the quality of the conversations we are having, with ourselves, our daughters, friends, neighbors, colleagues and even people we hardly knew.
These conversations include the entries in the Caringbridge guestbook (Alison’s entries read like a journal of their own), emails we receive, phone conversations, letters and cards and the words that come with and through the gifts that keep appearing in our mailbox. As it turns out, much of these conversations are, one way or another, about vulnerability and joy. If I had to pick two words to describe this summer it would be those two.

Vulnerability is what got this whole adventure started. When the plane went down we were utterly vulnerable, strapped in our seats with only one exit door and no time to escape. But our bodies went limp as we blacked out which may account for why many body parts emerged unscathed. We have been vulnerable ever since to further emotional and physical injury (pain, hospital infections, falls, withdrawal from narcotics, frustrations, anxieties and worries) and yet our mental and physical health is improving day by day; we were vulnerable to attack, censure, and criticism (from insurance companies, lawyers, the FAA, etc.) but we weren’t damaged by these, or someone stepped in to protect us. We have been vulnerable to temptation, to stand on that leg, to have that glass of wine, to take more or less than the prescribed medicine but we were able to resist, sometimes on our own, sometimes with help from others. And finally we have been vulnerable to pretend that we are better than we actually are, stronger, keeping up some appearance that we kept up before and in which we were heavily invested.

I have worn this vulnerability like a cloak and it has served me well. In Dutch the word for vulnerable is ‘kwetsbaar’ which is what you’d say of a very ripe piece of fruit: it can very easily be damaged. But if handled with care and eaten at the right time, the joy of eating the fruit is nearly indescribable. And so it has been with us these last six weeks: we have been handled with extreme care by everyone and it has released an unspeakable amount of joy in our relationships with each other. And this is what has changed the conversation: by being vulnerable with one another we can laugh and love more fully because it comes with all its strings openly attached: to fears, to tears, to anxieties and pain.

Axel was out all morning yesterday on a doctor’s appointment. There may be much wrong with the American health system but we are blessed with caring doctors who make time for us and are totally involved in our recovery. He returned exhausted but grateful while I was outside having a nice time over a delicious leftover lunch with Katie Blair. I am starting to get more involved in the administrative duties that Sita had taken over and felt both totally accomplished and totally exhausted doing only two simple tasks during the entire afternoon. I am also starting to catch up on my professional reading as part of easing back into work a couple of weeks from now.

Dinner came from the Quakers. Scott, another food artist like Fatou, had prepared a great meal which was delivered with Wednesday’s meal by Carole Rein. Sita’s friend Christopher stayed with us and added some mussels which he had picked out of the cove earlier. After that Axel, Sita and Jim went to Jim’s parents to watch the Red Sox. Tessa and I declined and went to bed. Some lost, some won.

Something has changed about my sense of guilt. My therapist Ruth Conway had already introduced the word ‘responsibility’ in our first session last week and it has poked around my head ever since. I have shifted from guilt to responsibility. This is more than a semantic shift.

There was much about guilt in the early days or even weeks after the crash in my journal and conversations with others. I remember clearly the moment I regained consciousness in the plane wreck; when I realized what I had done. As I waited for the rescuers to free me, I I kept saying softly , “I am sorry, I am sorry,” like a mantra. It was meant for Joan, for Axel, and for everyone else I had inconvenienced but I doubt anyone heard it.

Later, in the hospital, seeing Sita’s pictures of the others (I still have not seen Joan in the flesh) or when seeing Axel in his various states of recovery, I often thought, “What have I done to her/him?” Or when I was thinking about Morsi and his kids, “what havoc have I wrecked on them?” or “Look how I messed up their vacation!”

The other night when Axel was in great pain, having a terrible time with his arm as he tried to settle for the night, the same thought returned and I expressed it. This was not the first time for him to hear me say this (“What have I done to you?”). At previous occasions he had tried to talk me out of my guilt, as many others have tried. To ease my mind people have invoked the wind as the culprit, or forces outside my control (how about a broken windsock?). It does no good but everyone kept trying. I suppose it feels good for a brief moment, like peeing in your pants. Only for a moment.

But this time Axel’s answer was different. I think his answer snapped me out of the guilt mode. He said, “OK, it is true that, as the pilot, you are responsible for the crash that led to my sorry state. But then you also have to take responsibility for all the good that is coming out of this adversity; the love that people are pouring over us, the new friendships that have emerged with people we did not know so well before; the re-connection with friends we had neglected; the gift of idleness, etc. etc.” Suddenly the responsibility wasn’t such a burden anymore. The scales of the bad/good consequences appear to tip towards the good side, and responsibility seems OK.

Our last Monday of the summer was a quiet one and stood in sharp contrast to Sunday. I woke up to see a bunch of small tents scattered across the end of the yard. A few of Sita’s and Jim’s friends had stayed for the night and camped out. They enjoyed the beautiful day, the smoldering fire on the beach from the night before, kayaking and swimming. They also cleaned up and removed the last vestiges of the party while Tessa put in another work day in Rockport.

Axel had a visit from Sandy his nurse and then Robert, his new physical therapist from the VNA while I finished another book. At 6 PM Barbara Oswald (from our circle of Waring School friends) brought dinner, as announced on the calendar, and sat with us for awhile. It turns out she is an occupational therapist and was able to help Axel reduce the swelling on his arm. We are starting to think such appearances of skill and expertise when we need them are normal. Barbara set the table for the two of us and laid out the (adult) macaroni and cheese dinner she had cooked and accompanying salads. And so we had a lovely diner for two.

After she left we sat at the table, both teary-eyed about all this giving that has come our way. Axel reflected, “so many people doing this much for us, it is hard to absorb, I have difficulty in comprehending, absorbing, and accepting it. When someone brings dinner like this, it is another level of kindness; I am just so moved by it.” And while he talked I pulled out my computer and started to type his words. We talked/typed for a while, a first start for Axel to begin writing what this experience is all about. In the absence of his ability to do this for himself, I’ll be his chronicler for now.

We are thinking and talking a lot about love these day. And now I need Wikipedia to come to the rescue because English is a poor language with respect to this word. The Greeks were better to articulate the kind of love we are talking about and distinguish it from other varieties.

‘Agape is one of several Greek words translated into English as love. The word has been used in different ways by a variety of contemporary and ancient sources, including Biblical authors. Many have thought that this word represents divine, unconditional, self-sacrificing, active, volitional, and thoughtful love. Greek philosophers at the time of Plato and other ancient authors have used forms of the word to denote love of a spouse or family, or affection for a particular activity, in contrast to philia—an affection that could denote either brotherhood or generally non-sexual affection, and eros, an affection of a sexual nature, usually between two unequal partners. The term agape is rarely used in ancient manuscripts, but was used by the early Christians to refer to the self-sacrificing love of God for humanity, which they were committed to reciprocating and practicing towards God and among one another.’ (Wikipedia)

I asked Axel, after we were put to bed by Sita and Tessa, whether he felt loved (in the above sense) and he said yes, he did. I asked him whether he had been able to absorb all this love that came his/our way. This led to more talk about emotions, his, others’ and how to deal with them. Some people we saw yesterday cannot yet talk with us or look us in the eye without crying. It is easier to deal with this one on one, we simply cry back and the tears come automatically, from something deep inside that is touched, which takes us back to this particular notion of love. God is somewhere in that equation.

But sometimes the emotions come up in a group conversation and it is of a different nature, more shallow (but no less authentic or genuine) and people talk about the miracle of our survival and how glad they are we are still alive. (I typed alove instead of alive – funny how the fingers sometimes bypass the control of the mind). And that is when the response is more difficult, more measured, the mind takes over and this other life force that comes from somewhere else and brings the tears is temporarily disabled. Our language does not help us now. We call it rational. Daniel Goleman talks about the absence of emotional intelligence. We are handicapped and the word agape temporarily disappears from our internal dictionary. We stumble as we respond, awkward, feeling too rational, and the conversation moves on. Something has betrayed us; we’re a little less whole. Axel said, “it is not a switch I can turn on or off.” Gaining or regaining this capacity to respond whole is part of our healing challenge. By talking about it we are working on it.

Yesterday was a triumph. A triumph of the power of networks and a testimony to our collective ingenuity. This includes the bodies of Axel, Joan and myself which have healed beyond recognition (I lost my last scab yesterday) but also the cooking and organizational skills of many of our dearest friends. For all of you who came to Lobster Cove, thank you. It was a magical event. For all of you who called on the phone or who wrote to us, thank you for being there in spirit. I am sorry we were not able to connect with the thanksgiving party that took place on the other side of the Atlantic Ocean in Dinant in Bretagne where mussels and wine were sacrified in honor of our well being. We had to use our imagination rather than a webcam to imagine our friends there, but we managed fine without the electronics. It was finally the biting flies that chased us inside and brought an end to the day long party, at least for the older crowd. The younger crowd stayed on the beach around a campfire which we could faintly smell through our open window as we drifted asleep.

Sunday, August 26, 2007

We are ‘having it our way’ and we aren’t. We are constantly surrounded by people who are there to attend to our every need. But they attend to our needs in their way, unless we intervene and dictate our way. This was the big struggle yesterday, more so for Axel than for me, as I have a three week advantage over him.

Axel’s hand and eye problems make it hard for him to write. His computer, so much part of his life before the crash is now frustrating him. It took several days for him to write one letter. For me the injuries do not interfere with writing or reading and the computer connects me to the rest of the world and also to myself in this daily journal and this new reality of total dependence that we have been living for the last 6 weeks.

We had had a few moments together, alone, where we have started to talk about the experience of being cared for, and having the house managed, daily living orchestrated, stuff put away in ways that are, of necessity, different than ours. We have also started to talk about the difficulty of having to ask for help, so much, so often. We have always been so independent and so completely self sufficient. There are old parent tapes and the need to have some measure of control that mingle together. The mingling would be fine if it wasn’t for the accompanying need for Axel to get up (or down to the cellar) and get things, open drawers, and do it himself. As a result he tires himself and gets cranky. And I watch this from my (usually) sitting positions and become a nag.

When people come and go it is hard to set one’s own agenda and even harder when one of your defining features is pleasing others, even those who come to help. We can easily end up in a no-man’s land where everyone is trying to please everyone else and no one gets what they need or intended. This is our struggle these days and I do believe that writing is a good path through it. We have to learn to be very intentional about our needs (I need to sleep now; I need to be sitting quietly and read or think; we need to be together now and talk privately).

Such intentionality is going to be tricky today, the day of our party. But my intentions for the day are fairly clear. For me it is truly a day of celebrations: that we are alive and were given another chance, that we have our two amazing girls with such supportive partners, that we are surrounded by a network of loving family and friends which collectively has all the resources that we (and our house, our appliances, our flowers and vegetables) could possibly need to get through this rough spot, that we have health insurance and that I am employed and have a good number of sick days to keep the paycheck coming for a bit longer. It is also an early thanksgiving for the miracle of our survival and all the good that has come our way. And finally it will be a day of (re)connection and (re)discovery as the various subgroups within the network have a chance to meet, and I get to see colleagues from work I have not seen for 6 weeks.

Yesterday was the hottest day in the area but we enjoyed a steady cool breeze throughout the day. Sita came home early from Dallas while Tessa was away at work. I never even saw her before I went to bed. A long hot day for her no doubt.

In the morning Fatou showed up with the first batch of her cooking and now has her own refrigerator especially dedicated to West African food in the basement. She also attended to our every need for the next several hours, massaging Axel’s neck and shoulder muscles, preparing and serving us a restaurant like lunch fashioned creatively out of leftovers and carrying stuff from one place to another. Susie Wadia Ells stopped by to transmit an offer from Joe the healer to come by some time again. Later our friends Ruth from DC and Ron from Atlanta flew in from their respective cities for a weekend stay and cooked us another leftover dinner so that the refrigerator was sufficiently empty to handle whatever comes next. Some of this ‘what comes next’ had an early appearance in the form of Diane Neal Emmens returning from a funeral in town with three large platters of sandwiches, so the refrigerators were immediately full again. Tim and Deb stopped by briefly emerging from the other direction (the cove) and by touching their cool and wet skin we could experience the cool water of Lobster Cove by association. We miss that experience terribly. They left their kayaks on our land for our party guests to enjoy.