Today seemed very hard. Lots of end of year good byes and a rushed afternoon. All I know is that all of a sudden I came to my room and flipped open my computer and typed in those old words: lightofsasha.wordpress.com. For some reason I had to, hearing Leo and Sasha argue upstairs I just had to (I hope you understand.).

 

I read each story while looking back, trying to think about what was going on then, and what I know now that I didn’t know then. All I can say was when I went back to the old blog and read the very first post I began to cry.

 

So much is going on — for example Sasha went to the gym today — and yes that was a huge landmark but for some reason it made me upset. On June 27 Leo and I will be going to the Egger boys’ land of dreams and that is Camp Lanakila. Even though that is the most magical place in the world, seeing the young counselors also makes me sad. People at camp still call me Sasha sometimes. Some nights at camp I could not sleep because when I think of Sasha I just worry. I worry so much even when I hear something good. For me seeing Sasha doing so good is petrifying to me even though that is very strange.

-Oliver

At Passover last Friday we named them and marked each by spilling on our plates a drop of red-wine blood: the Ten Plagues that the God of Moses inflicted on the Egyptians.

Exodus explains that most of the violence was gratuitous; Pharaoh was prepared to give in long before, but God hardened his heart over and over, prolonging and escalating the suffering.

It is as though we ourselves left Egypt.

We prepared a lamb for dinner and set a little of its blood aside in a bowl. We dipped a sprig of the Ezov plant – a plant known for its purgative and purifying properties – into the blood painted a sign around the front door of our house.

That night the God of Moses killed the eldest son in every unmarked house in Egypt.

At this year’s Seder, I introduced a new reading, immediately after the Ten Plagues. Egyptians’ own words – about what it is to feel God’s Absence, and to know his Presence.  I translated from the Hieroglyphs – “The God’s Marks” — poetry carved in stone in Amarna, in approximately 1600 B.C. Perhaps 50-80 years before the Exodus. My translation is literal, but I excerpted and reordered some passages for thematic clarity.

Egypt and the Cosmos

I.  Negative Vision

So many are your works!

Yet much remains hidden

O solitary god

You have no consort.

You made the world

To please your own heart

 

You were all alone.

 

You would not be alone with your creation

You made your creatures see it.

 

Lord, you are far away!

And yet your light reaches out.

 

But when you leave our minds

Our world is in darkness

A foretaste of death.

Like bodies lying inside a great house,

Faces wrapped in cloth

Seeing nothing

Oblivious even to the Thief who takes

Everything there is.

 

Lions hunt us.

Vipers poison us.

 

This Darkness is a house of death

That walls all earth in silence

When you are lost to us

Beyond our horizon

Gone away.

 

 

II. Positive Vision

Life-giving Life

You made Time

So that your creations could take form.

 

Each day is your holy day

All Egypt celebrates

You wake your people

They stand, purify themselves, and bind their garments

They raise their arms to praise You.

 

The world grows busy with work

Each practicing the craft that suits him best

Animals graze content

In pasturelands and orchards

 

All plants grow green

Birds wake and rise from their nests

You are with them.

 

Herds leap to their feet

Birds startle and fly away

All alive because of You.

 

In the waters of a mother’s womb

You transform seeds

Making them human beings.

 

You quickened a son in his mother’s body.

He was quiet then, you soothed his tears,

You nursed him in the womb.

 

You gave him the breath of life;

All his life’s work, he owes to you.

 

When he crowned on the day of his birth

Born to his rightful place

You were the one to open his mouth.

 

A chick in its egg already chirps.

A stone, you gave it breath inside,

Uniting it with life.

It cracks the egg, and from its egg breaks free,

It chirps, is unified, moves freely on two feet,

It breaks free as it speaks.

 

Men and women, cattle and wild creatures

All that goes on foot and all that flies on the wing

The lands beyond the desert, Syria and Nubia

And the Black Land of Egypt.

 

You give humanity a home and livelihood

To each his measured grain and days of life.

They speak many languages

Their qualities vary

Even their complexions are distinct:

You make unique the peoples of the world.

 

To give life to all nations is your wish

You made the Nile

With its sources hidden.

 

You made humanity for yourself

You are their Lord who cares for them.

 

You give life to the peoples beyond the desert

You made a Nile in the sky to descend for them

Flooding down on the mountains like a sea

Soaking their fields from the sky.

 

How well-crafted are your plans

O Lord forever of the cycles of life:

 

A Nile falling from the sky

For the foreign nations

And the wild creatures

 

And a Nile flowing from the soil

For Egypt, your beloved land.

 

This morning Sasha had his first piano lesson since his relapse in August 2011. Sasha, his teacher Suzie, and I were all apprehensive. None of us knew how much memory or facility he had lost. So she started him out with some scales, the circle of fifths, some easy pattern exercises. His fingering was fine and it sounded pretty good.

Sasha said he wanted to try the Clementi piece – a relatively complex work he had begun practicing a few weeks before he fell ill. Suzie and I wanted him to work up to it gradually. It might be crushing to him if he were unable play it at all. But he asked again, and since had played everything else correctly, Suzie said ok. He played first the right hand, a little tentatively, then the left, and then both hands together, and he remembered it almost perfectly. It sounded like he had been away from the piano for eight months, but that was it — it could not have been any better.  It was rusty, a little uneven in tempo, and utterly, sublimely beautiful.

If anything in this world could show me the possibility that Sasha might recover completely from this terrible illness, this was it. And then it hit me, and I began to choke up. An unfamiliar feeling that pierced the armor of my realism. Hope.

 

 

Three months shy of three years ago, I first wrote about what it felt like to bring Sasha home from the hospital after an episode of encephalitis. Then, it had been ten weeks away at the wars; now, we are coming home after six months. Then, we were all newcomers to the field of battle; now, as veterans, our expectations are indelibly sharpened and darkened by memories of the last three years.  

But one thing is the same: again, our house is falling down.

For six months people have been sleeping at West Club Blvd., but no one’s really been living here. There is a meandering pile of garbage by the back door that urgently belongs at the dump; small trees are sprouting from the rain gutters on the front porch. Three cracked panes of glass are taped over with cardboard. The refrigerator growls unpleasantly and discharges a steady stream of water into the kitchen. My recliner no longer reclines. Every light bulb, indoors and out, mounted higher than seven feet off the ground is burned out. The bathroom sink provides only scalding hot water. Everything that was once white – couches, curtains, risers – is smudged and grey. Three bins overflow with unsorted mail.  Piles of things that need to be sorted to be useful – medicines old and new, clothes outgrown and outworn, broken toys and faded colors, block doorways and demand immediate attention in every room.

Like returning to a house through which a flood recently flowed,  I’m feeling it might be easier to tear down and start over than reclaim it as home. But obviously, fixing all this is a guy’s job, and I am that guy. I asked Jonathan Weiner to help me. We  had to start somewhere, so we started yesterday with the cold water faucet. The first new faucet had a defective valve and needed to be disassembled and taken back. The extension tube on the second was too wide; the third extension tube was too long and needed trimming with a hack saw.  After two days and three trips to Home Depot, we still have no water; but I have the satisfying frustration of overcoming ordinary household problems. Sasha spent a couple hours out in the sunshine, and now is watching UNC basketball. Our dog got a good walk and is fast asleep on her new bed.

The here and now is the secret sauce. What more could I ask?

Yes, Sasha is scheduled to be discharged from Duke Hospital, tomorrow. I have been afraid to even mention it: on the blog, or on the NMDA-antibody encephalitis Facebook group, or to my friends and colleagues, out of base superstition. We all still feel the smashed hopes of his last discharge. For two days at the beginning of September, he was home, seemingly peaceful and in full command of his faculties, and on the second night woke up in delirium. He has been in the hospital ever since.

This past week Sasha got some transitional passes to try “life on the outside.” We first went to his favorite diner – Elmos’s – and he had his standard order – three scrambled eggs, a biscuit and a large order of fries. Then he got tired. That pass lasted an hour. Next, with his brothers and the dog, we went for a walk by the Eno River – about three hours of ordinary life on a misty day. And yesterday, he came home to watch the Superbowl, and calmly faced the second painful Pats loss to the Giants in four years. Four hours at home. Now we are scrambling to arrange the care he needs for full-time at home, and it seems like a big leap. Sasha will continue to need help with many basic activities of life. He is not ready to return to school, even part time. No one thinks the illness is completely resolved — he is still scheduled to get regular ivig and Cytoxan treatments, although the ivig at least can probably be given at home. He is on many other medicines as well, and cognitively is nowhere near where he was when he fell ill in September. Where he will end up this time is not knowable; we saw great improvement that continued for more than a year after his 2009 illness.  But he needed time free of a crisis — and we are all frankly terrified of a relapse. But, there is no question that, for the moment at least, Sasha is simply too well to be in the hospital. Which itself seems miraculous. Sasha has inner resources and resilience that have kept him going through unspeakable circumstances. I am so proud of him. What is lost is lost, and what remains remains. It is a catastrophe, but no longer an emergency.

Rebecca is improving on a new antibiotic and was well enough to be discharged from hospital. She is resting at home, trying to eat some solid food and get her strength back. Assuming she continues to improve, we are hoping she can resume her semester at King’s College in about two weeks. But no way are we sending her back to London until she is completely better!

 

Sasha is also much improved -for five days, none of the involuntary talking to himself that has been such a predominant symptom of this entire 5-month relapse. He Is showing interest in texting his friends, and starting to talk about things he wants to do when he gets out. Doctors are weaning him slowly off medications but already he is getting no iv drugs, so we de-accessed his iv port today. Doctors are suggesting a pass for coming home for a few hours some time next week. Don’t want to be superstitious, but am finding it hard to write about because it seems too encouraging…

I know this is a blog about Sasha, but…I need to give you some news on our daughter, Rebecca. On January 4, Rebecca, who is a junior at UNC, left for a Semester abroad in London, studying computer science at King’s College. She had been having abdominal pain before she left, but had been checked out by a GI specialist and appeared to be much improved on antibiotics. However,  even on antibiotics she started getting worse, was unable to eat, lost about 7 pounds in two weeks, and was reaching the point where she felt too weak to get out of her dorm room. So around 1:30 am on Sunday morning Helen and I made the decision that she should just get herself to the airport, get on a plane back to the US, and we would take her to the hospital here. It took a major effort and intense pain for her to get  to the airport, but she arrived in Durham 4 pm on Sunday and Helen drove her straight to the Emergency Room. She was admitted, given iv morphine, etc. etc. So for the last 36 hours we have had two children in Duke Hospital. All indications are that Rebecca has something more routine than Sasha and will be able to go back to school in a few weeks. As a footnote, I would say that Sasha continues to improve, so the race is on to see which kid can get themselves discharged first…