Robin Berghaus on her documentary STUMPED and what happens when you lose all your limbs all at once.

Robin Berghaus on her documentary STUMPED and what happens when you lose all your limbs all at once.

GOOD DOCS sat down with Robin Berghaus to discuss her latest film, STUMPED, about a man who takes on an experimental, extremely risky transplant surgery to replace his arms. Along the way, we also talked about “the Holy Grail” of transplant research, how to balance romance with caregiving, and the life-changing power of scrambled eggs. Interview conducted by Sean Steinberg.


We know this film explores Will Lautzeneheiser’s journey through rehab, stand-up comedy and arm transplantation, but going beyond the literal events we watch, what’s it about on a deeper level?
STUMPED is about courage, resilience, risk taking and the life-changing potential of pioneering medicine. The film is also a love story about the beauty and strength of a committed community, and the healing power of humor.

How do you see this film being used for educational purposes?
Every time we show STUMPED, we learn about how the film is connecting with audiences.After a film screening, a woman told us that STUMPED has inspired her daughter to become an occupational therapist and an organ donor. At universities and high schools, the film has sparked conversations about identity, health care and human rights. At our Science on Screen event, veteran transplant surgeon Dr. Richard Freeman joined us to talk about the risks, rewards and ethics of pioneering medicine. LGBTQ audiences are touched by the film, because it realistically portrays the complex relationship of a loving gay couple. Medical professionals have praised STUMPED for addressing patient-physician relationships, psychosocial aspects of rehabilitation, and the history of transplantation.Based on these conversations, I envision STUMPED being used as a valuable teaching tool at universities, high schools, medical and nursing schools, physical and occupational therapy programs, disability, social work and LGBTQ studies programs, and support groups.

Can you talk more about your efforts around organ donation?
According to United Network for Organ Sharing (UNOS), more than 115,000 people in the United States are awaiting life-saving transplants. On average, 20 people die each day due to a lack of available organs. Because of this need, we have partnered with organ procurement organizations (OPOs) to raise awareness. At our screenings, OPO volunteers answer questions and register audience members as organ donors. It only takes a couple of minutes to sign up, and it is the most beautiful gift one human can give to another.

Something like transplanting arms is a really exciting new development. Can you talk about how this amazing, pioneering medicine came about?
People have fantasized about the possibility of transplantation for a very long time. We see depictions going back to the third century of Saints Cosmas and Damian performing a leg transplant.Those fantasies became a reality when the world’s first successful human organ transplant—a kidney between identical twins—was performed in 1954. That team was led by Dr. Joseph Murray.

Murray’s care of wounded soldiers during World War II helped develop the transplantation field. He noticed that when skin from a deceased person was used to treat a soldier’s burns, the skin would eventually melt away. But if skin were taken from a soldier’s body to treat his own wounds, the skin would survive. These observations led Murray and a team of scientists on a path to discover the immune system, to learn about rejection, and to eventually develop immunosuppressant drugs that permitted transplants between unrelated people. Further advances in microsurgery allowed tiny blood vessels and nerves to be connected. The convergence of all these breakthroughs led to the development of face and arm transplants.

What impact do face and arm transplants have on the patients who take a chance and decide to undergo these procedures?
Faces and hands are the primary body parts we use to communicate with the world, and we use our hands to perform important tasks.Will risked his life to undergo arm transplantation, because he desperately wanted to regain independence—to cook, shower, dress, feed himself, and to get back to filmmaking. He had upper body prostheses that helped him perform some functions, but they were very limited. He also craved a spiritual and emotional connection—to be able to hug his partner, Angel, and to feel sensation.There is a man, Dallas Wiens, who lost his eyes, lips and nose when he was struck by a high voltage wire. Severely disfigured, Dallas become depressed and socially isolated. After receiving a face transplant, he could kiss his daughter. He could breathe and eat independently. He could go out in public without people staring at him. Two years after his surgery, he got married. For Will and Dallas, arm and face transplants gave them hope, and vastly improved their lives.

What sort of challenges are these patients and surgeons facing with these relatively new surgeries? What opportunities are being presented?
All patients who receive transplants must take a life-long regimen of immunosuppressant drugs to prevent their immune systems from rejecting the transplants. These drugs can increase patients’ susceptibility to infection, and they can cause serious health problems, such as cancer, diabetes and heart disease.
There are many scientists worldwide researching new therapies aimed at minimizing immunosuppression, because that’s really the Holy Grail. If they could figure that out, then these transplants would become a lot less risky, and life expectancies would increase for all transplant recipients.
Face and arm transplants are providing scientists with a new model for immunosuppression research. Since they’re external, one can see in real time—in the form of a skin rash—whether rejection is occurring. This visual cue allows doctors to act more quickly. They’re not playing catch-up. So new treatments have the potential to be tested more safely on patients with face and arm transplants, and could benefit all transplant recipients.
In terms of why it’s important to continue to push ahead and pioneer medicine, these advancements have the potential to provide patients with improved health, independence and qualities of life, beyond what is available to them today.

Did Will ever seem afraid that the transplanted arms would be rejected?
Will did have fear. He knew that the drugs could potentially shorten his life span and have dangerous side effects, including rejection of the transplanted arms.Something that I really admire about Will is that he knows these procedures are experimental and that a few brave people have to be willing to be among the first to undergo them. He felt like he could do his part to contribute to science and help others. So he was willing to take on those risks.

What about his partner and caregiver, Angel? Was he afraid?
Yes, Angel saw the potential for something bad to happen immediately during Will’s surgery—blood loss, infection, death—and also from the long-term side effects with the medicationsInitially, Angel said that if he were Will, he wouldn’t do it. But I think he’s changed his mind now. To see all the progress that Will’s made, I think that they both feel that it was the right thing.

There are a lot of inspirational stories out there about people overcoming obstacles. What’s special about this one?
Telling this story was fascinating to me because of the experimental transplantation. Learning about a new medical breakthrough, and showing someone’s transformation, that was really beautiful to watch, and a great learning experience.In terms of why the people in the film are so special, it was moving to see a loving community—Angel, their family, friends and medical team—rally together to help Will. And I was drawn to Will because of the positive way he dealt with trauma. In the ICU, Will’s humor helped to put his medical team and friends at ease. Later, he started performing stand-up. Not only are his routines hilarious, but they offer insight about what it’s like to live with severe disabilities.

How is this story relevant to the here-and-now?
After we show STUMPED, people often want to discuss health care in regard to Will’s treatments. While this topic is not explicitly explored in our film, it keeps coming up because it’s on people’s minds. Right now, there’s a debate about health insurance in our country. In Will’s case, he was so lucky. He accepted a job at Montana State University, and signed up for health insurance. After two days, he felt a pain in his leg that kept getting worse, so he went to the hospital. He had no idea the pain was being caused by a group-A strep infection that would eventually kill his limbs. Will was fortunate that he had health insurance. Without it, he either would have died, or would have become bankrupt trying to afford all of those treatments. Now, there’s discussion in our government about striking down parts of the Affordable Care Act, so provisions that currently protect people with pre-existing medical conditions might no longer be defended. That’s a life-or-death situation for many people, including organ, face and arm transplant recipients who could potentially be denied coverage.

Before Will’s amputations, he and Angel were romantic partners. Can you talk about how that relationship changed once Angel took on the caregiver role?
Immediately after Will’s limbs were amputated, a lot of responsibilities fell on Angel. That caused stress and placed a burden on Angel, but it also caused Will to feel a lot of guilt. Balancing a romantic relationship with caregiving was new territory, and they had to work together to figure things out. Something I admire about Angel is that he asks for help when he’s feeling overwhelmed. Angel’s great about saying, “You know, I just don’t feel like doing that right now,” or “No, I’m tired.” He has learned to set limits, because he really needed to find some balance in his life. So I think that the key for them was having open communication and asking for help from friends, family, anyone in the community who could help out. And fortunately for Will, he has social security disability income and benefits that enable him to hire personal care assistants. This extra help takes some of the burden off of Angel.

Between the health insurance and the social security aspects, it seems like this film makes a strong case for the need for a social security net.
What happened to Will could happen to anyone. We all can get sick at some point in our lives. I know it’s complicated, but I think as a society, it’s important for us to work together to try to ensure that everyone has access to affordable health care.

Did you ever sense that Will’s disability cast a shadow over his social interactions?
For the most part, people have interacted with Will as they would with any other person.But Will has told me about occasions when strangers approached him while he was with Angel, and they directed questions to Angel about Will, while Will was right there. They assumed, perhaps, that Will also had developmental disabilities—which isn’t the case.That happened before his arm transplants. Seeing his missing arms, that visual image, conjured that idea in people’s minds. He feels that strangers interact with him differently now, after his transplants, and treat him more as an intellectual equal.

How would Will prefer people approach him?
Will is very welcoming of questions. He wants people to ask him anything: what he can and what he can’t do, what his experiences are. So his advice would be to communicate, to be open.

Will is definitely very up front about his condition, to the extent that he performs a comedy routine about his disability. What do you think stand-up offers him?
Will felt empowered being on stage and joking about these terrible circumstances. Comedy can be a form of therapy, and for him it was cathartic.Stand-up comedy also gave him a platform. Seeing someone who’s funny and intelligent on stage—and who also has a disability—that’s humanizing and an effective way to break down stereotypes.

Do you think that’s why he chose to participate in the film?
Yes. Participating in this film allowed Will to share his story and connect with other people. Because trauma and disability can be isolating, being public helped Will feel that he was not alone. Will also hoped that by sharing his story, he could help other people who might be struggling.

What do you think Will missed most from his life before the amputations, when he still had his independence?
Walking. He used to walk everywhere. It took Will a long time to build his strength and to be able to walk on the prosthetic legs. Gradually, he had improved his abilities. But recently, doctors discovered that Will’s bones have deteriorated due to his initial infection. Since walking puts pressure on joints, Will has been advised to not walk right now. That’s a significant loss, because walking was a part of his independence—to be able to get up and move around. Not all places are wheelchair accessible. He also missed cooking, and he’s starting to get back into the kitchen. That’s a big deal for him. He made scrambled eggs recently. He was able to get the eggs out of the fridge, crack them, heat them, and cook them. He just needed help with the pan because it was hot. And, of course, he missed filmmaking. Now, he’s directing and editing a short film that is a tribute to his donor, and he hopes to operate a camera again.

The film ends on a powerful moment: you ask Will and Angel how they’re doing since the surgery, and they fumble over their response for a minute before you eventually cut away…it’s a rather ambiguous ending. How do you interpret that?
That moment between Will and Angel represents the lifelong process of rehab—the triumphs and challenges it presents for a couple.Right after his arm transplants, Will was back to ground zero because his arms didn’t function. Angel was there every step of the way, helping Will to shower, get dressed and to eat. Now, as Will’s nerves continue to travel from his own arms into the donor arms, his new hands are gaining sensation and functioning.I imagine that many people assume rehab is a quick process, but it can take many years. Will and Angel are going to work through these experiences throughout their lives. It’s not easy. They’ll get frustrated, but they’ll also grow, love and learn from one another.