FAQ’s ABOUT TRISTAN

(as of May 1, 2010, written by Gabby, his partner)

1- Can he talk?

Yes, Tristan started talking in early December (shortly after he ripped out his tracheotomy tube).

2- What does he say? Does he know who he is?

Tristan knows who he is and he remembers his pre-injury life. He’s maintained a lot of specialized knowledge, he tells stories, he recognizes people in pictures, he sings his favorite songs, etc. His long term memory for life before the injury is generally excellent.

3- What does his voice sound like? Is there heavy slurring? Does he have trouble formulating language?

Tristan speaks clearly but softly. We have very good communication from him, but it can be difficult to hear what he’s saying if there’s competing noise. While other cognitive functions have been impacted, Tristan’s language abilities are more or less intact. He’s maintained adult grammar and vocabulary and has not needed therapy to re-learn language.

4- How did Tristan communicate during the months before he was talking?

Before he was talking, Tristan communicated primarily with gestures and pantomime, and also by writing and spelling words out on a communication board. (Although it’s very difficult to read his handwriting, and it used to be much worse.)

In earlier days (and for a long time) Tristan had very limited and sometimes inconsistent communication, primarily with yes/no hand signals.  Besides hand signals, communication was also achieved by presenting objects or writing choices on a board and asking Tristan to point to the correct or desired one. In the bad old days, Tristan could really only handle two options at a time.

5- I hear he was in a coma.

Tristan was never in a coma, but he lingered in a   “minimally responsive” state for his first six to seven months post-injury. During this time, life was almost completely dominated by medical complications and Tristan could only maintain wakefulness for a few minutes at a time. It was a horrible period with a lot of uncertainty about whether or not life would ever get better, but he pulled through it and it has.

6- What changed?

In August Tristan had two surgeries, a Cranioplasty (a reconstructive surgery on his skull) followed by a VP Shunt (to regulate the flow of Cerebrospinal Fluid in his body). Tristan started noticeably “waking up” more following the shunt surgery, then experienced a very serious infection and went septic. He was put on high doses of intravenous anti-biotics for an extremely long time. Weeks later he emerged from the fevers and started making the slow climb out of the abyss.

7- Has his personality changed? How has Tristan been most affected cognitively by the injury?

Tristan has maintained a lot of his values and knowledge base as an activist and as the person we knew, but he has been profoundly affected by the injury to his brain. Among other things, he suffers from difficulties with impulse control and short term memory retrieval that impacts everything he does all the time.

I’m afraid in answering this question that I’ll give an overly optimistic or an overly pessimistic view to the people who are reading it. At various times talking to friends, I feel that I have done both.  The fact is, it’s complicated.

Brain injury can make a person a bit of an enigma.

For instance, Tristan can legitimately play adult trivia games at a higher level than I can, but he can’t play Connect Four or other simple children’s board games because he gets too caught up in putting all the pieces in and he can’t wait his turn.

Tristan oscillates constantly between being knowledgeable and insightful to being unreasonable and child-like. There is never a time that I am unaware of his injury.

8-  What parts of his body and brain were injured on March 13, 2009?

Tristan was shot in the forehead above his right eye and was primarily injured in the right frontal lobe of his brain. He also suffered injury due to hemorrhaging and swelling during his first week in the ICU which very nearly took his life and did more damage. These secondary injuries caused significant harm to the right temporal lobe and to other areas of his brain.

Tristan was also blinded in the right eye and the orbit (the bone surrounding this eye) was smashed to pieces. He is classified as having had a “severe” traumatic brain injury.

9- How has he been affected physically?

Tristan is hemiplegic. He is not completely paralyzed but has almost no movement at all in his left arm and left leg. This is particularly difficult for him because he was left handed.

Tristan is also still recovering from the extensive damage done to his body by the months of being mostly bed-ridden and immobilized.

10- Will he walk again?

Tristan is in a wheelchair. Recently we’ve been seeing some movement come back in his left hip, and his physical therapist feels optimistic that given proper therapy, he will be able to regain some ability to walk. However, she has warned that this may take years of work.

11- What is daily life like for you guys at the Rehabilitation Center?

On a good busy day, the mornings are a flurry of activity as Tristan moves between physical, speech and occupational therapy appointments.  We squeeze in two meals and hopefully have time leftover for exercises and practice on a Standing Frame (a supported structure in the physical therapy room that lets Tristan’s body get used to standing again.)  Sometimes we also use a recumbent style stationary exercise bike that Tristan can peddle actively using his right leg and passively with his left.

In the early afternoon Tristan goes back to bed and rests for about two hours.  He typically gets up about 4:00 or 4:30 and goes on a long walk with his father, then comes back and eats dinner. He eats a lot of variations on rice and beans and vegetables and a lot of different kinds of soups.

After dinner we figure out what to do with the rest of the evening.  Sometimes Tristan works with a computer.  Other times we play card games, board games, stuff like that.  We try to get him used to operating his wheel chair for himself. Sometimes we work him pretty hard, other times we just hang out.  We read to each other a lot, including some of Tristan’s old writings.

We try to keep him company here and do something in between “work” and “play” in the free time we have. Mike, Nancy, and I have no lives at all. We’re here at the hospital pretty much all the time.

12- Does he ever get out of the hospital?

Not very often, but sometimes. We try to get out on the weekends.

13- How is he handling this emotionally?

For better or worse, Tristan has never heavily grieved over his injury. He is very aware of ways that the injury has affected him physically, but less aware or accepting of the cognitive repercussions.

In the last several months we’ve seen him slowly start to get more in touch with his feelings, and I believe this will continue to develop with time.

14- Are you still seeing improvement in his abilities?

Yes.

15- Is he still in critical condition?

No, at this point, Tristan is in the post-acute stage of his injury. He’s living in a hospital because he gets rehabilitation there.

16- Is he pretty much independent now or does he need a lot of help?

He needs a lot of help.

17- What’s happening with the court cases?

There are two court cases, a criminal case and a civil case.

As of now, the Israeli Police who investigated Tristan’s shooting have closed the case without bringing criminal charges against anyone involved. The investigation has been widely criticized as a sham, and we are appealing this decision.

(There was a misleading article published by Ha’aretz entitled “State to Re-investigate Wounding of U.S. Activist”, which was spread all over the internet and gave the false impression that the Israeli state was re-opening Tristan’s case. In fact all that happened is that our lawyers submitted an appeal and the other side is legally obliged to accept our paperwork, so they did. That’s it.)

Besides the criminal case, there is also a civil case which Tristan’s family is bringing against the Israeli military to help cover the lifetime of medical expenses, lost wages, and continuing care that Tristan will need. We have been warned that the civil case is likely to take years before coming to fruition. (Rachel Corries’ civil case, filed in 2005, first made it in to court here about a month and a half ago, which is appalling.)

18- What is the basis of your appeal to re-open the criminal case?

The investigation into Tristan’s shooting is a perfect illustration of why the police and the army can not be trusted to investigate themselves.

The investigators, for instance, never even bothered to go to the scene where the shooting took place. No physical evidence was ever collected.

Additionally, eye witnesses uniformly testified that the shots were fired from a nearby hill. Even though the military has confirmed that indeed there were Border Police armed with high velocity tear gas positioned on that hill, the entire investigation into Tristan’s shooting relates instead to the irrelevant conduct of an irrelevant squad of Border Police positioned on the other side of town.

To date, the Border Police on the hill where the shots were fired have never been questioned.

19- Is there anything we can do to help demand justice for Tristan?

We are demanding that the criminal case against the Border Police involved in Tristan’s shooting be re-opened immediately and a meaningful investigation begun.

Friends are urged to contact Barbara Lee, Tristan’s representative in Congress (202-225-2661) or to picket their local Israeli Consulate,

(http://www.israelemb.org/israeli-consulate-in-usa.htm) demanding that Israel take full responsibility for Tristan’s shooting.

We also recognize that during the time that we’ve been here in the hospital with Tristan, two other activists have died at demonstrations against the Wall. Their names were Basem Abu Rahme and Yousef ‘Akil’ Tsadik Srour. Basem was killed while screaming to soldiers that this was a non-violent demonstration and telling them to stop shooting at a woman protester who’d been injured. Akil died coming to the aid of a sixteen year old boy who’d been shot in the spine.

To date, Israel has killed 23 people to build their Wall, and seriously wounded many more, including Ehab Fadel Barghouthi (age 14), shot in the head at a demonstration several weeks ago.

Putting finishing touches on this document, I learn that Ahmad Sliman Salem Dib, age 19, was shot to death just days ago on the 28th of April, at a demonstration against land seizure in Gaza.

Demanding Justice for Tristan is also demanding justice for them, and recognizing the role of the United States government in war and occupation around the world.

20- Will Tristan make a full recovery?  Do the doctors have any kind of long term projection?

There is no long term projection.  As long as he’s still doing better, no one can tell how far he’ll go.  But the fact is, you can’t just shoot somebody in the head and then take it back.  Dead brain tissue stays dead, but the human mind can learn to compensate.

The most common metaphor I’ve heard to describe brain injury rehabilitation is this: You’re traveling down the road and the highway is blocked.  The question is: can you find a way to get to where you’re going using the back roads?  People who are successful at brain injury rehabilitation form new pathways and find them.

21- When do you think he will be ready to come home?

This is also the question that Tristan asks all the time. We expect to fly back in to California some time in the summer of 2010.

Tristan will move in with his parents and live with them in their small rural town. He will continue his rehabilitation on an out-patient basis from there. We plan to also set up a satellite home for him in the Bay Area and move back and forth.

My hope is that friends and family will accept Tristan for his abilities and disabilities, and find ways to welcome him back home.

For anyone inspired, there will be a lot of work to do.

We are accepting monetary donations through this website. Also, we’re starting a Welcome Tristan listserve for logistical coordination of accessibility projects and bright ideas.  To subscribe send a blank email to friendsoftristan+subscribe@googlegroups.com

August 16th Health Update

Since last update a new theory has emergerged to explain the deteriortion in energy level and ability which we have seen in Tristan in the past three months: Tristan has a condition called POST-TRAUMATIC HYDROCEPHALUS.  We can see it on his CT Scans.

Hydrocephalus is a blockage of the VENTRICLES, open spaces in the brain, which causes poor circuation of CSF (cerebral spinal fluid) in the head.

The internet is full of scary things about the dangers of hydrocephalus, mostly as it relates to hydrocephalus causing increased pressure on the brain, which is a condition we’ve taken measures to prevent.

The good news about the hydrocphalus is that it should have caused no additional permanent damage to Tristan’s brain, although the doctors are unwilling to promise us that after treatment Tristan will just bounce back to his old improved condition from before onset.

In Tristan’s case, treatment of the hydrocephalus is a two step process: first a CRANIOPLASTY to restore functionality to Tristan’s skull, followed by a permanent internal SHUNT which will drain CSF from Tristan’s head to the lining of his abdominal cavity for the rest of his life.

On MONDAY AUGUST 10, Tristan underwent Step One of the process, the cranioplasty.   During the cranioplasty, plastic moldings were fused with Tristan’s existing skull.  Though the cranioplasty involved neuro-surgeons, they did not touch Tristan’s brain.

The cranioplasty was a large and intensive surgical procedure which took several hours. Since Monday evening, Tristan has been recovering in the Neuro-Surgical ward of Tel Hashomer Hospital.  He is recovering slowly but steadily.  He has suffered no complications.

In the coming days Tristan will be treated with Step 2, the internal shunt.  The shunt is a much more minor procedure.

Both the cranioplasty and the shunt carry significant risk of infection.  In the coming weeks we will be watching Tristan very closely for any signs that things could be going awry.

So far, so good.

**In other good news, Tristan has not visibly leaked CSF in several weeks.  It seems that Tristan’s body may have repaired the CSF LEAK itself, which is excellent.

July 21 Health Update

This has been a very trying time for all of us. Tristan’s recovery has not followed a straight linear path of “better-better-better”, but rather has gone up and down. He has suffered and come back from several very serious complications including hemorrhaging, pneumonia, swelling, meningitis, and unusually large leak of cerebrospinal fluid (CSF); as well as periodic fevers and more minor infections.

Tristan is conscious. He understands what people are saying around him and can respond. He recognizes the people and objects around him. He is responsive and affectionate with those he loves.

Tristan can not speak. As of writing he still has a tracheotomy, which means that he is physically unable to make vocalizations. When he transitions out of the tracheotomy, we will know more about his status with regards to natural speech. In the mean time, Tristan communicates with hand signals, gestures, and “selection”: we write choices on a dry erase board and Tristan points to the correct or preferred one. We also use real object selection, whereby he points to or reaches for a preferred object.

Tristan is easily tired and overwhelmed. In the last two and a half months, his energy level has dropped significantly. Our doctors are unsure exactly how the CSF leak is affecting him, but we understand that at the very least there is a strong correlation between this period of extreme tiredness and the period of the CSF leak.

A surgery is planned for the coming weeks which we hope will stop the leak.

Tristan suffered serious brain damage as a result of being shot. He faces deeper obstructions than the fatigue alone. However, until we can move past this time of extraordinary tiredness, it is unclear how far we can go with the rehabilitation. We, like everyone here at the Rehabilitation Center, hope for a very good recovery. We expect this process to move very slowly.

April 11th update

Tristan’s family is still closely guarding information about his health, but we are able to give limited updates.  He is currently out of intensive care, and in a regular ward. He is semi-conscious and responsive.  His health is improving day by day, but his condition is still considered critical.

Letter from some friends who recently visited Tristan

Hey Friends,

Two weeks ago we traveled across two borders (one of which is the most illegitimate in the world) to see Tristan in the hospital. We feel tremendously grateful that it was geographically possible for us to make this trip. For us, it’s a place so close, but sometimes feels like a world away. We know we were there representing many, many people that love and respect Tristan and are fighting along side him from afar.

Tristan is receiving wonderful care and is surrounded by loving family and companions. Tristan’s mother and father, Nancy and Mike, flew in two days after the incident. They are incredibly strong and grounded people and it helped to be around them.

Even in the worst possible circumstance it was a joy to meet Tristan’s partner, Gabi. Her experience under stress shines through and her coping skills were astonishing. We just hope that by this time she has taken a few minutes to step outside of the hospital walls to enjoy a few minutes in the sun!

We spent two days in the hospital pacing circles in windowless corridors, curled up on couches, eating ridiculous quantities of
hummus, and drinking coffee from a machine.

We also spending hours sitting in silence, holding each other while we cried and barely exhaling while Tristan underwent an emergency surgery.

The anarchists that Tristan and Gabi are friends with are phenomenally devoted. They arranged for fresh food to be brought everyday, drove us to and from the hospital and were always there, around the clock, with new people coming in when others had to leave. If there’s one thing that gave us hope during our visit to an occupied state it was them. It was inspiring to see so much heart in their movement. They have been through this kind of thing many times, and know how to take care of each other.

On the Friday after Tristan was shot, a bunch of people went back to the same place, where people protest every Friday against the construction of the wall that is cutting farmers from their land. They held signs with Tristan’s face on it, saying things like, “We will never forget what you did to Tristan” and “I am an American and you shot my friend Tristan.” They told us later that, unlike usual, this time the soldiers didn’t laugh at them.

In the hospital, we sat around telling stories about Tristan’s childhood dirt collecting, desert trips with his dad, his ability to live off those gross plastic wrapped sandwiches that are ever floating around Berkeley, his punctuality smashing banks in Argentina, and amazing dumpster dives and feats of daring. Being together made us deeply appreciate how much so many of us have been inspired by Tristan, and how valuable every long conversation with him has been, and how naturally he melts away the barriers between our personal and political lives. We all admired his commitment, and the way he laughs, and talks about the beautiful things in our world.

It wasn’t until the last day that we actually got to see Tristan and he was still heavily sedated at the time. There is no way that we can say it was easy to see our strong, beautiful friend lying immobile in a hospital bed. It wasn’t. But it was still Tristan and that part was reassuring.

Since we left he has been recovering slowly but steadily. He is still unconscious, as far as anyone can tell, but last we heard he was starting to move his limbs slightly. Before they put him under heavy sedation for his second brain surgery, he was answering questions with hand movements and trying to pull the tube out of his throat. He has had part of his right frontal lobe removed and both sides of his skull to relieve pressure. He had internal infections, but last we heard, they were going away. The doctors say that if he makes it through this, he will be there for at least a few more weeks, but probably a lot longer.

Many of our friends in the Palestinian neighborhood where we live knew about Tristan’s injury before we told them. They share our sadness and anger over what happened to him. One friend showed up the night before we left town with a shoebox full of roses to bring to him, another started a local online campaign at http://www.ajras.org/en (warning: there is a disturbingly graphic image of Tristan when he was injured on the front page.). Their support shows us how much Tristan’s actions are valued by people who don’t even have the freedom to see their homeland.

Keep sending your love to Tristan, Mike, Nancy and Gabi, they need it! The doctors stressed that things always go up and down, and the road ahead is long. Everything Tristan’s friends have been doing from afar makes a difference.

The International Solidarity Movement is collecting donations for Tristan’s medical expenses here.

Much Love,
Shane Bauer, Sarah Shourd and Nora Shourd

Health Updates

We are currently figuring out the best system of updating the public on Tristan’s health.  He is in stable but critical condition currently.  Doctors are guardedly optimistic, but caution that his injuries are still life theatening.  He has lost portions of his frontal lobe, and may lose vision in his right eye.  More detailed updates will be posted as soon as possible.