Giffords grieved over shooting deaths

HOUSTON  Rep. Gabrielle Giffords is left-handed now.

Her handwriting looks different in the letter she recently wrote to her husband, astronaut Mark Kelly, than it did the last time he went into space. Giffords' mother helped her pen the traditional NASA sendoff note two weeks ago. She wrote to her sweetie pie, and that part  those words  were the same.

Many other things are different since Giffords' brain was pierced by a bullet during the shootings near Tucson on Jan. 8. Her hair is short, maybe 2 inches long, says Pia Carusone, her chief of staff, so there are scars on her scalp that show through. Eventually, her hair will cover them. A thin scar across the top of her forehead is healing well and fading, and her face, though sometimes swollen, is otherwise the same as before, Carusone says.

Ive met with her doctors, her neurosurgeon and her doctors, and theyve given us permission to take her down to the launch, said Kelly, who is commanding the shuttle mission.

Giffords speaks most often in a single word or declarative phrase: love you, awesome, even get out to doctors in her room at the end of a taxing day. She longs to leave the rehab center, repeating I miss Tucson and wheeling herself to the doors at the end of the hall to peer out. When that day comes, Giffords told her nurse, she plans to walk a mountain.

Longer sentences frustrate Giffords. She must search her brain for the words she wants, which feels like trying to pull out the name of a familiar face you can't quite place, her doctors say. Once she builds the sentence in her mind, she speaks clearly and at a normal rate, and can offer as many words as she has the patience to string together. The doctor overseeing her rehabilitation places her in the top 5% of patients recovering from this injury.

So many people long to understand how she's doing. There have been suggestions and impressions, but mostly questions, because she has been so invisible. Only slivers have been shared: a Facebook photo of her hands here, a Twitter message there. She wants toast, or she's doing well. Headlines hang on small details.

Giffords has not spoken publicly since the shooting.

But a series of exclusive Republic interviews over the past week with those closest to her captured a more complete understanding of her condition than anyone outside her closely kept circle has seen. Her doctors, staff, husband and a nurse shared Giffords' struggles, triumphs and path forward, and details about how she looks, acts, speaks and thinks.

Early buzz about her insinuated everything from exaggerated optimism to expectations of a Senate campaign in 2012. There are rumors of a $200,000 reward should paparazzi capture a current photo, Carusone says. Staff and family have faced the difficult task of balancing intense public interest with the privacy of a woman who still is working to communicate and process complex thoughts. They think she should release her own photo, and only when she's ready.

The details of Giffords at week 15 of her recovery are a snapshot, those close to her say, it is important to understand that this snapshot changes.

I can't say I notice improvement every day, says Kelly, her husband, but I can every few days.

Almost every 72 hours, she resembles more closely the woman she was before.

Her staff is pressed for definitions, schedules, firm prognoses.

It's unfair to set expectations on her in any way, Carusone says. We all want the best. We want her to make the best recovery. Would a triumphant return be amazing? Yes. But first of all, her close friends and family will take anything.

They remember to be grateful that she lived.

Rehab with a shopping cart

Gabrielle Giffords does rehabilitation with a bowling ball and a grocery cart.

At the end of week 15, she can stand on her own and walk a little, but is working to improve her gait, says Dr. Gerard Francisco, the physiatrist and chief medical officer at TIRR Memorial Hermann who works with Giffords five days a week.

Use of her right arm and leg is limited but improving, he says  a common effect of a bullet wound on the left side of the brain. She pushes a grocery cart up and down the hospital halls as therapy, focusing on using the correct muscles, says nurse Kristy Poteet, who has worked with Giffords since she arrived in Houston on Jan. 21. More therapy comes from games of bowling and indoor golf, Poteet says.

Giffords used to be right-handed. Maybe she will be again. That answer, like so many others, will come long after week 15.

The change makes everything harder  writing, dressing, eating,  but she tries.

The doctors want to make sure she doesn't develop bad muscular habits on her left side while compensating for her right, which could mean new problems later.

Her left side is perfect, Carusone says. She can do whatever you can do.

Like before, Giffords has opinions and she makes them known  which medications she'll agree to take, which University of Arizona T-shirts she'll stretch over her head for her workout sessions, and what she thinks about her options for breakfast.

She's the boss, Kelly says.

Even in her wheelchair, Giffords has stringent posture, Carusone says: tall, tight, strong  like always.

She shows a lot more independence right now  that's what's emerging, Dr. Francisco says, and it's an important sign. She's her own person.

She lets everyone know when she's tired  even her husband, who called Carusone the other night to report, Gabby just kicked me out of her room. She said, Go home. Love you. Bye-bye.'.

Kelly loved it. Headstrong, determined. That's the congresswoman. That's his wife.

It wasnt toast

Something else to know about Gabrielle Giffords: Her first word was not toast.

When news spread that she was speaking, her staffers remarked that for a recent breakfast in Houston, Giffords had requested toast. Somehow, it was adopted as the first evidence of her speech. (She is mailed toast T-shirts from fans still.) Her staff and family aren't sure what the exact word was. Nurses who cared for her at University Medical Center in Tucson believe they saw her mouthing messages even then.

It seems like her first words might have been thank you, Kelly says, or maybe not.

Also, she currently prefers granola.

In the early days at TIRR, nurse Poteet says, Giffords said something else: What is happening to me?  a phrase she repeated over and over.

It was a good phrase, doctors told the usual crew of family, friends and staffers gathered in Giffords' room. It meant she had become aware of herself and of her limitations.

There were hopeful language signs even on the March day that Giffords learned about the people killed on Jan. 8. She had been told there were more bullets, Kelly says, but she didn't yet know that there were deaths. He was reading aloud to her from the New York Times  a story about Giffords herself. She followed with her eyes over his shoulder, noticed that he skipped a paragraph, and grabbed the paper out of his hand. He hadn't realized how well she could read.

The paragraph told of six dead, many more wounded. Kelly comforted Giffords while she cried. Her grief spread over days and weeks.

So many people, so many people, Giffords repeated.

Her nurse Poteet would find Giffords with heavy looks on her face, repeating no-no-no-no-no.

She was thinking of it like she couldn't believe it, Poteet says. She kept saying, I want so bad,' and she was trying to talk about it. But it was too many thoughts in one.

For that reason, Kelly hasn't told Giffords that the shooting victims included her friends and colleagues Gabe Zimmerman and Judge John Roll, or a 9-year-old girl, and three others, the kind of older constituents she loves to help.

That news will spark a wave of complex, layered questions, and Kelly wants her to be able to process the emotions without fighting so hard for the words.

The challenge is she knows what she wants to say, and she knows everything that's going on around her, Carusone says, but can't always express it. It's frustrating for her. She'll sigh out of exasperation.

Her husband reminds Giffords to be easy on herself.

We have all the time in the world, there's no rush, I tell her. I have a lot of patience, so just take your time.

Her staff reminds her of how far she's come.

We tell her, When you arrived here, this is what you were able to do  which is not as much as you are today, Carusone says.

Her nurse reminds her of where she has been.

She gets up every morning, and she has her therapies, and we say, You didn't get to be a congresswoman by lying around.

Reminders of home

Gabrielle Giffords keeps a rock from Arizona near her hospital bed.

It reminds her of home.

To protect her privacy and security, Giffords sleeps and recuperates in an area of the hospital guarded by Capitol Police, Carusone says. Officers have been with Giffords continuously since the days after the shooting. A uniformed security guard takes visitor names in the lobby of TIRR, where there is also a traditional information desk. The guard arrived when she did.

Only selected hospital staffers work with Giffords, and they have been checking their cell phones in at the door before shifts, Carusone said. So far, their efforts to shield her from cameras and $200,000 bounties have worked, and loneliness is kept at bay because Giffords is hardly alone.

Her room is filled with family  almost always her parents, Gloria and Spencer, who have rarely left their daughter since she was shot. There is a string of visitors from Washington, D.C., and Tucson  including her friend Raoul Erickson, who covered the walls with poster-size photos of Giffords' happy moments: at her wedding, hiking the Grand Canyon, working underneath her old Chevy Corvair. Her memory clear, she still knows and loves these things, doctors say.

Piles of flowers and cards and mail stream into TIRR. The packages are checked by security before they're brought to Giffords' room, where a long row of post-office bins lines the floor. The letters make her happy, Carusone says. She has a stress squeezer in the shape of the Capitol dome, even a family of giant stuffed white tigers sent from Las Vegas by Siegfried and Roy. The pair took up the cause of brain injuries after Roy Horn was bit in the neck by a tiger in 2003, resulting in a stroke and partial paralysis.

At TIRR, rehab in one of the three workout rooms could mean therapy in the swimming pool, on a weight set, or on a machine that tracks arm movements to show patients if they're engaging the right muscles. The sound of weights clanging and rubber balls bouncing drift from the gym into the corridors. The halls are all fluorescent lighting and linoleum. In the garden out front, hot-pink roses keep company with boxwood hedges and a bronze sculpture of Prometheus Unbound. It depicts a man in triumph, freed from the chains that held him back.

Most often, Giffords works out privately, but it's not because she wouldn't want to be with other people, says Carusone, because the Gabby she knows would for sure.

At TIRR, patients' family members linger in the gym  and they don't have to check their cameras at the door.

Kelly asked Giffords what they could all do to help her feel more like herself in rehab.

I want to work, she said, and so her staff brings her articles and office memos about the work they are doing. That's therapy, too  it helps her reading comprehension. Coming soon, Carusone says: printouts of simple House of Representatives resolutions.

Kelly comes to TIRR in the morning with coffee and the newspaper, heads to work at NASA, and returns to Giffords at night to talk through their days. Sometimes, he takes a nap with his wife in her hospital bed. It's a twin-size mattress, and so he holds her close.

When he comes into the room, Giffords breaks into an oversized smile, nurse Poteet says, reaching out her good arm to beckon him to her side, give him a half-hug.

Sometimes, Giffords and Kelly play Scrabble. It helps Giffords work on her spelling, even when Kelly makes up words, like o-x-e as another spelling of ox', he insisted, which made Giffords laugh.

She will miss him while he's in space, Poteet says. Kelly spent a string of days in Florida recently preparing for the launch. Poteet could see his absence on Giffords' face.

Launch raises more questions

Gabrielle Giffords is beginning week 16, which brings her husband's shuttle launch, which brings its own set of questions.

The Associated Press reported Sunday that Kelly said in an interview with CBS News that Giffords will attend Fridays launch of his space shuttle mission in Florida.

Is it safe?

Yes to that, too, doctors say  even though a piece of her skull is still missing. She won't need a specially pressurized plane, and the hospital will send nurse Poteet and any other necessary staff along with her, says Dr. Dong Kim, the neurosurgeon at Memorial Hermann who oversees Giffords' care. We're very comfortable with her traveling.

Is it wise?

She is ready, Dr. Kim says, and outings from TIRR help doctors measure patients in their real worlds. Giffords' happens to include Kennedy Space Center.

It's an opportunity for us to find out what else we need to work on, Dr. Francisco, the physiatrist, says. It's not a break.

What will be hard for her?

There will be more movement required, Dr. Francisco says, and new people for her to react to, though Kelly has asked his NASA crew to treat his wife with care. She will watch the launch from a private location  a NASA tradition for all the crew families. They are kept from the public eye in case of a public tragedy.

Does she want to go?

That answer has always been clear. Yes, she says, anytime anyone asks her.

Giffords overheard Kelly talking about cutting her activities there short  maybe just a few hours at the traditional pre-launch beach barbecue, for example. He didn't want her to get tired.

No, she told him. Whole thing.

Yes to all of it.

Feisty side

Once, Gabrielle Giffords felt her doctor's bald spot.

He was lingering in her room, the way the hospital staff tends to do. She told him to get out, and they laughed together.

To tease him further, she reached up and gave his head a rub.

Injuries like Giffords' can bring depression, personality change, behavior problems, trouble relating to others. Giffords' doctors say she seems to have escaped all of those things.

At the hospital, people want to be near her  and that's something to understand about Giffords that never changed: her tendency toward joy, sensitivity for others, and her ability to make others care immediately about her. That's charisma  the intangible force that drew people to polls to vote for her, to Congress on Your Corner at Safeway to talk to her, to the hospital in Tucson to leave flowers on the lawn and pray for her.

By all accounts, that's the woman in this hospital room.

Sometimes, nurse Poteet gets nervous. She was nervous the first time she met her patient, but the worry went away right when I saw her, right when she looked at me. She grabbed my hand and rubbed my arm.

Giffords is compassionate, Poteet says, listening to her motherhood woes.

You see it in her eyes  the way she looks at you. She just really attentively listens.

Poteet was nervous for this interview, told Giffords what she was doing.

Practice, practice, Giffords told her. And then she kept telling me I was smart  smart, smart.'

She's more beautiful than any of those pictures, and all the nurses have said that  that big beautiful smile that's always there.

The women, each 40, understand one another.

She can't really say much, Poteet says, but a couple weeks ago she grabbed my hand and she looked at me and she said, sisters.'

Hopes for the future

When Gabrielle Giffords' neurologist talks about his hope for her future, he makes a fist and thumps his heart.

I feel it here, Dr. Kim says. She's still got a ways to go. I think she's going to get there. I keep saying that.

He compares progress to the Giffords of week one, and even day one: bleeding on a sidewalk, in surgery at University Medical Center, where doctors weren't sure she would live. On that day, some of the public, and even her husband, heard false reports that she had already died.

For somebody with that kind of injury, we start with, Are they even going to come out of the coma,'. Dr. Kim says, much less what are they going to be doing later?'.

But Giffords is maybe in the top 1% of patients in terms of how far she's come, and how quickly she's gotten there. I think the question, then, becomes, how far is she going to go?

The only concrete answer: farther.

Most of the physical and speech recovery happens within nine to 12 months, Dr. Kim says, but judgment, how well a patient can think  those recoveries continue for years. Small things crop up down the road that patients need to improve.

Giffords' communications director, C.J. Karamargin, says he imagines that his tenacious boss will always be trying to get better at something.

There will be large milestones to come: Walking independently, Dr. Kim says, and she's pretty close to that.

He wants her to have more efficient speech.

In May, he will repair her skull with a cranial implant  computer-generated to fill in where Giffords' bone used to be. The portion removed by Tucson doctors  a piece just larger than a man's palm, Dr. Kim says  was frozen and preserved, but is partially contaminated. The bullet dragged in germs.

Kelly is lobbying Dr. Kim to do the surgery without shaving off Giffords' hair. Her 2 new inches took all 15 weeks to grow.

There has to be a way, Kelly says.

At the hospital in Tucson, even before her eyes were open, nurses saw Giffords reach her hand up to touch her head, processing the sensation of a bare scalp where there was blonde hair before.

Out-patient rehab is far off, Dr. Kim says.

After the cranioplasty, there will be therapy for reading, problem solving, and sessions on using a Blackberry.

At some point, just living your life is rehab, Dr. Kim says.

The goal is Giffords, version Jan. 7, 2011.

You cannot be a good rehabilitation professional if you're not optimistic, Dr. Francisco says. Our goal is to try to bring the person back to where she was. Sometimes we're successful, many times we're not.

How far is she going to go?

Maybe, says Carusone, we'll know something at Christmas.

Daily moods vary

Some days, Gabrielle Giffords believes that she is never going to get better.

Her staffers tell her she won't talk like this forever, or walk like this forever, and she thinks we're blowing smoke, Carusone says.

Some days, Gabrielle Giffords believes that she will recover, after all.

When I tell her that she's not going to be in a wheelchair forever, she believes that, says Kelly, her husband. Right now she gets up and takes a couple steps. I think she'll probably use a wheelchair for, I don't know, maybe another three months.

She knows she's going to be a lot better.

They talk about it, he says  how she's improving all the time.

I talk to her about where she wants to go, but because it's difficult for her to articulate certain things, I'm not sure, Kelly says.

His own questions hang in the back of his mind: worries about weeks 17, 18, 19, 20.

What is her recovery going to look like? he wonders.

Where is she going to be in a year?

Where is she going to be in two years?

It looks good, he says. Promising.

But I don't think anybody knows.

Kelly has a space trip ahead of him, but he might be more excited for the moment he returns, and finds his wife.

He'll get to absorb two weeks of milestones all at once.

That's enough, for now, he says  just to see her get better.

Contributing: Samantha Valtierra Bush, Karen Schmidt and Kiali Wong