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Will’s Choice

To live, an alum gives up his arms and legs

30

In nightly dreams, Will Lautzenheiser still rolls out of bed in the morning and walks wherever his adventurous spirit takes him. He’s still a lanky guy, a graceful 6 foot 2, with straight hair and a generous laugh that seems somehow at odds with his contemplative blue eyes.

In real life, Lautzenheiser, doesn’t get out of bed, at least not without a great deal of help. And he hasn’t walked anywhere since last fall, when a group A streptococcus infection shut down his lungs, kidneys, and heart, then unleashed a toxin that brought death to his limbs. He told the surgeons at University Hospital in Salt Lake City to do what they had to do—he just wanted to live. Seven months later, the new Will Lautzenheiser, still handsome and still contemplative, but with stumps where his arms and legs used to be, has yet to appear in dreams. When he does, Lautzenheiser hopes he’ll be ready for him.

“I’m not angry,” says Lautzenheiser (CAS’96, COM’07), now 37. “I feel cheated and I feel robbed of a lot. But really, what am I supposed to be angry at? The microbes? I was vastly outnumbered, millions to one, and they took me down. I can’t blame them for that.”

Will Lautzenheiser, Boston University

Will Lautzenheiser’s undergraduate yearbook photo, 1996.

Lautzenheiser spent nearly 20 years on the BU campus, where he was an exceptional student and an extraordinary mentor. As a College of Communication master’s student in film (and later as a teacher), he wore a jacket to class and called his teachers “Professor.” His friends, who wore blue jeans and called their professors by their first names, never held it against him. They had too much respect for the older classmate who seemed to know everything and was always willing to help them.

“Will took academics very seriously,” says Peter McCann (COM’08), a former fellow student at COM. “He took responsibility for his own education very seriously. Will never did anything half-assed.” Saul Bellow (Hon.’04), a friend and employer for five years until his death in 2005, labeled Lautzenheiser “a noticer,” an encomium the writer reserved for a special few. Lautzenheiser’s colleagues at COM recall a tireless mentor, a teacher who was never too busy to watch yet another cut of a student’s film.

He was attentive, but he was also demanding, Lautzenheiser says. “I always told them, ‘Why do something if you’re not going to do it as well as it can be done?’ I mean, isn’t that the point of doing anything?”

One evening last August, Lautzenheiser was eating at an Indian restaurant in Boston when a strange, feverish chill rushed through his body. Two nights later, as he was moving a box of books, pain flared through his thigh. He wondered whether he had pulled a muscle. For the next two weeks, the pain came and went, more frequently and more piercingly as time went by. Lautzenheiser ordinarily took even minor ailments seriously, but that summer, he had too much going on to worry about aches and pains. He was moving to Bozeman, Mont., where he had signed on to teach filmmaking at Montana State University. Bob Arnold, a former professor at COM and the new director of the School of Film and Photography at Montana State, considered recruiting the dedicated teacher a coup.

It was Arnold who gave Lautzenheiser a lift, 10 days after he arrived in Bozeman, to the local Deaconess Hospital so doctors could have a look at his leg. Lautzenheiser remembers walking into the hospital, and he remembers calling his twin brother, Tom, in Easthampton, Mass. Tom remembers the conversation: “He said, ‘I’ve been through the wringer.’ He said they were going to put him on a ventilator to give his lungs a rest. He gave me power of attorney, and told me to give my daughter a hug for him.”

Tom then spoke to Robert Schoene, an exercise physiologist and high-altitude medicine expert, who told him that the medical staff in Bozeman didn’t know what was causing his brother’s illness, but they did know that he was very sick. Tom asked if he should get on a plane, and the doctor said he should probably “just sit tight.” Tom thought he knew what that meant: “They expected Will to die.”

Tom Lautzenheiser did not sit tight. He flew to Montana the next day, and made his way to St. Vincent Healthcare, in Billings, where Will had been transferred. When he walked into the ICU, he had to peer around a bank of medical machines to see his brother.

“The change was unspeakable,” he says. “Will had gained half again his body weight in fluids. He was hideously swollen. Even his eyes were swollen open. I bent down and said, ‘Will, you’re not alone.’ I think he moved his head a little. I think he knew I was there.”

Boys’ life

Will Lautzenheiser, Tom Lautzenheiser

Will Lautzenheiser (left) on the wedding day of his brother, Tom. Photo courtesy of Tom Lautzenheiser

Tom and Will Lautzenheiser had always been there for each other. The identical twins took turns sleeping on the upper and lower berths of a bunk bed during their childhood. “One of us would have the upper bunk for a while, then we’d switch, to be fair,” says Tom. The boys were part of the second family of Massachusetts state climatologist Robert Lautzenheiser, who was 59 when they were born. The twins looked alike, but thought differently. Tom was drawn to nature, fascinated by the frogs and turtles living in the ponds around their suburban town of Reading. Will liked stories. He read books and watched movies.

One day when the boys were in middle school, a camera crew arrived to film a segment on the importance of the Great Books. Because Will was one of the smart kids, he was chosen for on-camera comments. Then they brought in the camera.

“It was pure joy,” he remembers. “When I saw that camera all I could do was laugh. It was an immediate object of my love, and the very moment I saw it I knew that’s what I wanted to do.”

His teachers also knew what they wanted: a video undisturbed by giggles. Will’s first appearance on video was squelched by his irrepressible exuberance.

When he was 15, he saw Ingmar Bergman’s Wild Strawberries, the story of an elderly university professor contemplating the emptiness of a life that was closing in on itself—not the kind of film that would appeal to most teens. “I was blown away,” Will says.

By the time the Lautzenheiser boys got to Reading Memorial High School, there was no need for fraternal demonstrations of fairness, and Tom settled permanently in the bunk bed’s top berth. Now Massachusetts Audubon Society’s central and western regional scientist, Tom remained faithful to his love of the natural sciences, caring for the reptiles and amphibians at the high school’s animal care center. Will went deep into the arts. He was a dreamer and a reader and a devoted watcher of movies. Unlike many of his peers, he never understood the appeal of big-budget action films. He preferred small films, quiet stories about the extraordinary events of ordinary lives, films whose most powerful moments waited to be noticed.

Tom went to Tufts, and his brother entered the College of Arts & Sciences, where he studied English literature. He had always loved to read, and now he could read to his heart’s content, then talk about what he’d read with colleagues and professors, like Gerald Fitzgerald, an emeritus professor of English, who would become a close friend.

In his sophomore year, Lautzenheiser took a job as a researcher at the University’s now-defunct James Joyce Research Center, working under the direction of the famously eccentric John Kidd. Kidd was familiar to the world of Joycean scholarship as the man who persuaded W. W. Norton & Company to give him a $100,000 advance for an edition of Ulysses that would come closer to the Ulysses Joyce intended than any previous edition. In the office, Lautzenheiser recalls, Kidd was known for his deep personal connection with neighborhood pigeons, which he fed daily and called by name.

“It was a little crazy,” says Lautzenheiser. “We sometimes joked that it was the James Joyce Center and Aviary.”

Lautzenheiser graduated in 1996, summa cum laude, with distinction, Phi Beta Kappa, honors sufficient to earn a job as writer for Dennis Berkey, then the BU provost.

“It was a good job,” recalls Lautzenheiser, “but the provost didn’t really need a writer. He was a perfectly good writer himself.”

Berkey helped him find another job, as secretary and personal assistant for someone with even less need for writing assistance. Pulitzer Prize winner and Nobel laureate Saul Bellow had come to BU in 1993, recruited by President John Silber (Hon.’95). When Lautzenheiser started working for him, Bellow was 84 years old and had just had a child with his fifth wife, Janis Freedman-Bellow. Lautzenheiser and Bellow, both readers and both noticers, hit it off.

“Saul liked Will’s quiet, meditative side,” says Freedman-Bellow. “He liked to talk with Will about books. Will had a great sense of propriety and dignity, as well as a fierce loyalty to Saul.”

Lautzenheiser would prepare meals for Bellow, she recalls, and he would take extraordinary care that everything would taste just right. “He was a real perfectionist,” she says. “It didn’t matter to Saul if the food was imperfect, but it did matter to Will.”

It was his affection for Bellow, says Lautzenheiser, and the opportunity to remain close to the wisest man he’d ever met that persuaded him to stay at Boston University for his graduate studies in film. In 2005, he entered COM, a bit older and better outfitted than most of his classmates.

Friend and former classmate Kerstin Karlhuber says Will stood out for reasons other than his manner of dress. “He was a real intellectual,” says Karlhuber (COM’07). “He had a lot knowledge in a lot of areas, so he brought a lot to our classes. I think I learned as much from Will as I did from my professors.”

For thesis film projects, COM students are required to work together in different roles, such as directing, lighting, and sound. “No matter what role Will took on, it was the most important thing to him,” Karlhuber says. “He was always going above and beyond to help me out. We all knew we could always lean on Will.”

McCann, now a production assistant on the TV show Bones, says Lautzenheiser was someone most students deferred to. “He was kind of a rock for us,” says McCann. “As well as practically being a card-carrying genius.”

In 2007, a script cowritten by Lautzenheiser and Suzy Ryder (COM’07) won the Joseph A. Lalli Filmmaker Prize, a $5,000 grant that gave him enough money to produce Just Like It Was. The short film, which he directed, won a 2008 CINE Golden Eagle Award, acknowledging high-quality production by professional, independent, and student filmmakers.

Bob Arnold, Lautzenheiser’s thesis advisor, was well aware of his student’s role as a mentor. He invited him to work as a teaching assistant, nudging him down the path that would keep him at COM until last summer, when Arnold brought him to Montana.

Spreading death like fire

Will Lautzenheiser

Lautzenheiser has been operated on 15 times, for amputations, skin grafts, and for patellectomies, the removal of his kneecaps. Photo by Asia Kepka

Lautzenheiser taught his first class at Montana State University on Wednesday, August 31. “I thought it went really well,” he says. “I was really excited about it. The kids were totally open and very responsive.” But by the next day, he was suffering. The pain in his thigh had become nearly unbearable. When Arnold offered him a ride to Deaconess Hospital on Friday, Lautzenheiser gratefully accepted.

In Billings, the critical care team tested for many possible causes of Lautzenheiser’s illness, and each one came up empty. Then on Tuesday, test results of tissue taken from an abscess on his back came back positive for group A streptococcus. His organ failure, the team realized, was caused by toxic shock syndrome.

Group A streptococcus is a common bacterium that often causes strep throat and impetigo, and very often no illness at all. But if the bacterium finds its way into the blood or the lungs, it can wreak biological havoc. Streptococcal toxic shock syndrome doesn’t just tell vital organs to shut down, it can morph into necrotizing fasciitis, a ghoulish infection that quickly kills muscle, skin, and underlying tissue. The muscle dies and the skin turns blue, then blisters and falls off. As the tissue dies, more toxins enter the blood, which carries them onward, spreading death like fire. The only way to treat the toxic infection is to cut the dead flesh off, wait 24 hours, and look for more.

Once the medical team in Billings knew what they were dealing with, they started Lautzenheiser on clindamycin, a heavy-duty antibiotic that stops the growth of bacteria and also happens to inhibit the production of the flesh-killing toxin. It was, Tom says, a game changer, but it was already late in a deadly game, and the Billings team was not equipped to deal with Lautzenheiser’s increasing tissue damage. If the patient were to live, he would need the kind of emergency treatment available only at the best burn trauma units. The closest one was at University Hospital in Salt Lake City.

The plane left Billings at 3 a.m., with Tom sitting beside his brother while medical assistants pumped breath into the bloated body. When it landed, Tom believed that things were looking up. Lautzenheiser had survived the rigors of a medical flight and was now in the care of a world-class medical team. As they wheeled his brother through the University Hospital emergency department entrance, Tom allowed himself to think for the first time that he was going to live. But the price of survival would be enormous.

Two days after the flight, Lautzenheiser opened his eyes and saw a pleasant, bearded man in medical garb at his bedside. It was Jeffrey Saffle, the director of the hospital’s burn center and a professor of surgery at the University of Utah. “We knew he was coming,” says Saffle, who in 25 years at the burn center had treated more than a dozen other patients with necrotizing fasciitis. “We were told about him the night before, and we were waiting for him, but by the time he got here his condition had developed into full necrosis.”

Several days later, Saffle explained the situation to him. The infection that had stopped his kidneys and lungs was under control, but the damage to the tissues of his arms and legs could not be mitigated. His limbs were necrotic, and if he wanted to live, they would have to be removed. Saffle then unwrapped his hands and feet. “They were black like charcoal,” says Lautzenheiser. “I couldn’t feel them. I couldn’t move them. Dr. Saffle said, ‘What do you think?’ It was horrifying, but what could I do? Absolutely nothing except say yes.”

Saffle recalls that Lautzenheiser was “realistic about his options,” options that were, he says, “devastating.”

As the dead areas on Lautzenheiser’s body became more demarcated, Saffle made plans for surgery, trying, as always, to be as conservative as possible. “We wanted to save at least one elbow and both knees,” he says. “It’s much easier to walk with a prosthesis if you have a knee.”

Dido, Aeneas, and RoboCop

Will Lautzenheiser

Lautzenheiser hopes to be ready to leave Boston Medical Center by July 1. Photo by Asia Kepka

On September 13, Lautzenheiser’s legs were amputated below the knee. Six days later, his left arm was taken above the elbow, and his right arm below the elbow. His body was operated on 15 times, for amputations, skin grafts, and for patellectomies, the removal of his kneecaps. Then, weeks after the first amputations, Lautzenheiser’s left knee, spared in the original cuts, was deemed dangerously necrotic, as the joint deteriorated after the patellectomy. It too had to go. When Lautzenheiser finally looked at his legs, he cried.

Through the days and night of his surgeries, Lautzenheiser says, he dwelled in a dark dreamland that now seems like a horror film shot through gauze. The sound is bad. The lighting is spotty. He remembers nurses in his room, but the nurses aren’t fully human; they are robot nurses, or sometimes half robots and half human. He is wary of the nurses, but sometimes feels sorry for them when they seem sad. He can usually control them with his thoughts, and he has a couple of tricks he uses when he wants to elude them. One tactic involves switching from the year 2011, when he has no hands, to 2028, when he does have hands. He can do that simply by willing it, and although he isn’t sure how it works, he knows that it keeps him from present danger. Ultimately, he says, he chose to stay in 2011, because even in his dream state, he knew that was what he had to do.

As he drifted back toward reality, Lautzenheiser recalls, the journey was shaped by books he had read and movies he had seen, including several narratives about the reconstruction of human bodies. “Some were ghastly,” he says. “They were ghoulish. Frankenstein was one. There was RoboCop and there were others dealing with disfigurement, dismemberment, and reassembly. I kept thinking, there’s a line in RoboCop: ‘They can fix anything these days.’’’

Music too, he says, was a beacon of restoration. He remembers waking from unsettled sleep with a craving to hear Henry Purcell’s Dido and Aeneas.

“What got me through some of my more woeful time was art,” he says. “Even as I was trying to make sense of everything, it was film, literature, and even music in my mind.”

When he finally did reenter the world, Lautzenheiser says, one thing was clear. “I just kept saying, ‘I want to live, I want to live.’ There didn’t seem to be another choice that had to be made. And once I made that choice, everything else flowed from it. I had to get better. I had to fight to hold onto whatever I had. I was going to throw myself into physical therapy. I resolved to be the best patient I could possibly be. Of course, that has been hard. The main difficulty is emotional. It’s difficult for me to look around and see that my life isn’t going the way I expected it to go. But once that first decision was made, everything else was simple. I just had to live.”

When Tom left Salt Lake City in mid-October, their sister Mary flew out from New Jersey, starting a chain of visitors, family and friends. His parents begged to come, but Lautzenheiser insisted that they stay in Boston. Based on the medical team’s hopeful estimates, he told them he would be home soon, perhaps by Thanksgiving. Then he told them he could be home for Christmas. His real goal, he says, the one date he cared most about coming home for, was his mother’s birthday, January 28.

On January 25, after 140 days at University Hospital, where the staff had showered him with affection, Lautzenheiser was taken to a medical charter plane and flown east. He landed at Hanscom Field in Bedford, Mass., and was brought by ambulance to the 12-bed rehabilitation unit at Boston Medical Center.

Will Lautzenheiser, physical therapy

Lautzenheiser’s days at Boston Medical Center start with physical therapy. By late afternoon, his room fills with friends, former classmates, and professors. Photo by Asia Kepka

Lautzenheiser’s days at BMC start with three hours of physical therapy, often grueling and often painful. He does stomach crunches until he can do no more; his therapists forcibly bend his right knee until the pain becomes unbearable. But by late afternoon, his hospital room often becomes a salon, filled with friends, former classmates, and professors like Gerald Fitzgerald, extolling the wisdom of Graham Greene and wondering if Helen Mirren was really suited to play the role of Ida in the remake of Greene’s Brighton Rock.

“I’m happiest when it’s like that,” says Lautzenheiser. “When people come to socialize and talk about whatever strikes them as interesting, whether it’s art or science. I do wish I could be a better host.”

In addition to strength training, Lautzenheiser will master many of the tasks of daily living with a new prosthetic arm. He hopes to be ready to leave by July 1, when the rehab unit is scheduled to be closed, and he will move one step closer to living without hands in what he now calls “the handed world.”

There are days in Lautzenheiser’s new life when the future looks as dizzying as the past. One of them came in early March, when he was invited to meet with doctors from the Brigham and Women’s Hospital organ and limb transplant team, the group that three years ago performed the second face transplant in the United States and last fall did a double hand transplant on a quadruple amputee. The recipient of the hands, like Lautzenheiser, had lost his arms and legs after contracting sepsis.

“When they suggested that I was a candidate for transplants, I think I stopped breathing for a moment,” says Lautzenheiser. “They’re talking about a double arm transplant, with the possibility of a leg transplant. I’ve recently lost my limbs and I’m still coming to terms with that loss. I’ve been trying to work with prostheses for my upper body, and I can work with prostheses for the rest of my life. That’s one possibility. What they’re saying represents another possibility of actually regaining sensation, of actually having the ability to hold something, of being able to feel water, to feel anything. It may not be a 100 percent gain. It may be a 50 percent gain, but a 50 percent gain is better than no gain, and an elbow is better than no elbow. A knee is better than no knee.”

There is, of course, an immense biological liability that comes with all transplants: the likelihood that the host body will reject the newcomer. For that reason, all recipients of transplants live their lives under the influence of powerful immunosuppressants.

“I know that my life expectancy is reduced just by being a quadralateral amputee,” says Will. “How does the immunosuppressant problem alter that? I don’t know.”

There is, however, one possible exception to the immunosuppressant rule. Will’s body would be much less likely to reject a limb from someone with the same genetic foundation, someone who is an identical twin.

Will and Tom Lautzenheiser, Boston University

“I’m not angry,” says Lautzenheiser. “I feel cheated and I feel robbed of a lot. But really, what am I supposed to be angry at? The microbes? I was vastly outnumbered, millions to one, and they took me down. I can’t blame them for that.” Photo by Asia Kepka

“I can’t even think about that,” says Lautzenheiser. “I can’t go there.”

Tom could not help but think about it. Back in Billings, when his brother’s kidneys were shut down, he was ready to offer one of his. And in Salt Lake City, when the surgeries required extensive skin grafts, Tom approached doctors to ask if they would consider taking some of his.

“Because I would be willing to donate an organ,” Tom says, “of course I thought about what the limit might be: would I give Will an arm or a leg? My wife is an insightful woman, and a couple of months ago she asked me if this is something I was thinking about. When I told her it had crossed my mind, she told me in no uncertain terms that it was a crazy idea. Will, too, would categorically refuse even if it were a possibility. Too many shades of Shelley and Poe.”

In the hospital in Salt Lake City, Lautzenheiser was working with two prosthetic arms, and he was doing well. He could push a wheelchair. He could feed himself. He even learned to write, curiously, with his right arm, even though he had always been left-handed. He was pleased with that. He was proud of his dexterity, and he was impressed with the power he felt, setting words down on paper. The first thing of any length that he chose to set down on paper were words that as a student in CAS years earlier had moved him profoundly. With his mechanical hook, he carefully scripted the first lines of John Milton’s Paradise Lost:

Of Man’s First Disobedience, and the Fruit
Of that Forbidden Tree, whose mortal taste
Brought Death into the World, and all our woe,
With loss of Eden, till one greater Man
Restore us, and regain the blissful Seat.

Joe Chan can be reached at joechan@bu.edu.

30 Comments
Art Jahnke

Art Jahnke can be reached at jahnke@bu.edu.

30 Comments on Will’s Choice

  • Ukeme Esiet on 04.02.2012 at 6:48 am

    Thank you for telling this story.

  • Secret on 04.02.2012 at 6:58 am

    I wish the best for you Will. Keep living.

  • Francie King on 04.02.2012 at 8:30 am

    In my life outside BU, I am a personal historian, writing books for families about individual lives. This was among the best such stories I have ever read, not just because Lautzenheiser is an extraordinary person,but because Art Jahnke has captured this chain of events so well. Congratulations to both.

    F.B.King

  • Abram Trosky on 04.02.2012 at 9:01 am

    This was gripping, Art.

    Will, you also have an apt name, and continue to inspire.

    • Abram on 04.03.2012 at 11:25 am

      Gratitude to Joe, Asia, and Tom too.

      • Art Jahnke on 04.03.2012 at 1:22 pm

        I was humbled to work with Will. I feel honored to have had the opportunity to write this piece.

  • Caleb D. on 04.02.2012 at 9:32 am

    Powerful package, Art, Joe, and Asia! Kudos.

  • Mo on 04.02.2012 at 10:15 am

    What an incredible story of courage, love and perseverance. I have twin brothers 10 years older than Will. One is married with children and one not. I know my brothers would also consider giving up a limb for the other as well. Sadly but understandably, my sister in law would react in the same manner as well. Truly it is a situation and story beyond comprehension. I wish him well, prayers, and look forward to reading about his accomplishments both personal and professional. God Bless!

  • ZK on 04.02.2012 at 10:17 am

    Wow, BUToday is cranking out some unbelievably interesting articles and this one did not disappoint. I didn’t even think of the whole identicle twin / organ donor aspect until it was mentioned. Very interesting and well written. Keep up the good work.

  • Mo on 04.02.2012 at 10:22 am

    Certainly this story is not done being written as there are another chapters to be written with regard to Brigham and Women and the transplant etc, but I would love to see this inspiring story on the BIG screen someday. Go Will!

  • Zina Nord on 04.02.2012 at 10:45 am

    Thank you for sharing this inspiring story. Will’s choice to live, and to be the best that he can be in his new journey and unexpected chapter in his life, is a life lesson for us all to reckon with. Thank you again for sharing Will’s story.

  • Robert Oresick` on 04.02.2012 at 11:31 am

    Dear Art. This is a beautiful piece about a beautiful man. Truly really inspiring. bob

  • Kerstin Karlhuber on 04.02.2012 at 12:01 pm

    Beautifully done, Art! I am grateful to have been included in this beautiful portrait of my friend Will!

  • Charles Merzbacher on 04.02.2012 at 12:01 pm

    I know Will, and the highest compliment I can pay the team that made the video, article and photographs featured here is that they do justice to their inspiring subject. Wonderful work. Thank you.

  • Bruce J. on 04.02.2012 at 3:18 pm

    Great, truly inspiring story.

    In case this information is ever useful at some point in the future, I believe hyperbaric medicine treatment (pure oxygen delivered at several atmospheres of pressure in a sealed chamber) may have been effective in disrupting the progression of at least some cases of necrotizing fasciitis.

  • Edith Weiler on 04.02.2012 at 5:18 pm

    I admire you for your strength and acceptance to “reality” Will. I have never done well with reality, but certainly I have new appreciation for it. It’s there, and has to be dealt with to live. You see, you will always be a teacher, a professor of life. When I look at you, I see strength, when I look at myself, I feel weak. When I can look at myself and feel strong, I will come and visit you. I feel blessed you are family, and it’s an honor to say so. I care very much for you, and your closest of family and many friends. Your intimate story shows your bravery and unlimited willingness to overcome anything in your continued path. Much admiration and love, Edith Weiler

  • Jean Keith on 04.02.2012 at 5:32 pm

    An elegantly told story of such a remarkable man! Thank you for this powerfully moving piece!

  • Guest on 04.03.2012 at 9:21 am

    Maybe having arms and limbs in 2028 doesn’t have to be just a dream. Science suggests its very possible to regrow limbs with the right technology. We’re just not there yet. Apollo like efforts in medicine could do wonders. But I would try not to miss out on life in the meantime. Good luck.

  • DP on 04.03.2012 at 1:30 pm

    This is a truly amazing story of a truly courageous man. One of the most moving pieces I’ve read in BU Today. Thank you Will Lautzenheiser for sharing it and thank you Art Jahnke for writing it.

  • anonymous on 04.03.2012 at 3:00 pm

    I have been visiting BU today for many years and this is the best article I have ever read to this point. Well done!

    • andrew bogaard on 04.04.2012 at 9:54 am

      +1

  • Sara Rimer on 04.04.2012 at 4:26 pm

    Will, your grace and courage are inspiring. Thank you for sharing your story. Everyone who reads about you and all you’ve gone through and all you have to offer the world will root for you — and learn from you.
    Art, thank you for writing this story in the way you did. There isn’t a single false note. Will shines through.
    Hope you’ll keep updating us. What a perfect pre-Marathon Day story. This is about a marathon of survival and the love between brothers.

  • Sam Kaufffmann on 04.05.2012 at 10:42 am

    Beautiful, inspirational story about a beautiful and inspirational person.

  • Dora Paltzik on 04.06.2012 at 11:02 pm

    This is one of the saddest and most disturbing things that I’ve read, especially as it concerns someone I knew. I am so sorry to hear about this turn of events. I knew William when I was an undergraduate and I remember his intelligence, his gentle manner, and his soft spoken voice. It’s humbling to read about his will to live and how literature, film, and music and also the love and encouragement of friends and family have inspired him to go on despite the unimaginable suffering he’s experienced. William, I’m so sorry. Although the virulent bacteria took your arms and legs, they did not take away your mind, your spirit, and your heart. Bacteria can’t deprive you of your soul or your essence. Keep fighting!

  • Tim Kelley on 04.09.2012 at 12:51 pm

    Words can not express the degree of shock, sadness, and admiration I have for Will & Tom and All of Your Family. The book of Job comes to mind.

    The strength and thoughtfulness expressed in that video and story are superhuman.

  • Leslie McDonald on 04.09.2012 at 11:13 pm

    My son and I got to meet Will in November when I took my son back to see his caregivers from The University of Utah Burn Unit. Will was in my son’s old room. He is an amazing man and I had no idea we were both BU grads! Stay strong Will. Kellen says, “You are amazing dude!”

  • Rezwan Shahriar Sumit on 04.10.2012 at 12:48 am

    After reading this, no one should have complains about their lives! Will will need everyone’s attention in years to come. Those who are close to him should never let him feel lonely. It’s the loneliness that kills.

    Thanks for penning their amazing story, Mr. Art Jahnke.

    Warm regards from Bangladesh.

  • Edith Weiler on 04.10.2012 at 9:05 pm

    I talked to Susan the other day. :)~ Hope she told you.
    I am not has funny as she is-but I can’t wait to make you smile.

    Love you dear Will. I will see you soon. I think and pray for you daily.

    YOU are INCREDIABLE. YOU are my inspiration.
    As of today 4/12/2012 – 22 days off cigarettes! YOU are saving my life. I feel better already!
    xoxo Edith

  • Harith on 04.13.2012 at 11:04 am

    The real life is what being happening, meanwhile we are planing for something else. Here you are, in the real life. Keep on.

  • Hala on 07.18.2012 at 10:08 am

    Thank you for sharing your inspiring story. But I don’t know in the first interview last year.I think tom was will and will was tom in the last year pictures.Those identical twins are confusing ! I don’t know may be one loss weight and the other gain weight?.

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