From Trauma to TED: Boston Marathon Survivor Adrianne Haslet-Davis on Recovery, Care, and Collaboration

Apr 21, 2014, 12:30 AM, Posted by

Last month, I attended my first TED conference in Vancouver, Canada. Though inspiring, it was also overwhelming—in a sea of over 1200 guests, it can often be challenging to make meaningful personal connections. However, when I saw Adrianne Haslet-Davis step onto the stage and dance a beautiful rumba while wearing her prosthetic leg, I knew she was someone I wanted to meet.

While Adrianne and I had just a quick exchange of hellos in person at TED, I was further inspired by the message she wrote when she stopped by our RWJF Culture of Health Café. There she offered her own vision of a Culture of Health, framed within her personal experiences as a victim of the 2013 Boston Marathon bombing. Adrianne graciously offered to expand on her personal Culture of Health vision in a brief interview with me.

Shaheen: You recently returned from TED2014 in Vancouver, where you gave a powerful dance performance. Tell us about that experience.

Adrianne: It was no question at all where I wanted to dance [publicly] again for the first time.  It was important for me to do it at TED because I so strongly believe in TED’s message of getting people to think outside the box about issues that maybe we don’t know we’re interested in. I think it’s really eye-opening in that way.

I went into the project with Hugh Herr, director of the Biomechatronics Group at the MIT Media Lab, who came to me and said “Adrianne, I think we can make this [performance] happen but I’m not going to guarantee it. Are you in?” I said yes because it really helped me have a goal.

Hugh lost both legs in a climbing accident on Mt. Washington where he was trapped in a snow storm and suffered hypothermia and lost both legs right below the knee. So he experienced sudden traumatic amputation as an athlete just like me. We really related to each other in that way, and I needed to have a guide and a mentor like him to say, “This is difficult your first year. This is hard.”

As far as being there on the stage, it was incredibly emotional. I was holding back tears as I was dancing because I knew that I had reached a goal that I had set out to do for so long. I knew how much it would mean to other amputees, and how much it meant to the team that worked so hard to make it happen. It felt amazing.

Shaheen: While at TED you stopped by the RWJF Culture of Health Café and shared your personal vision of a Culture of Health. What was your inspiration?

Adrianne: I really felt passionately about the care I received in every aspect of my recovery. I had been thrust into this sudden traumatic event and had never had surgery before, never had large health issues, and so it was very difficult for me to go through that and to be in a hospital for a long period of time. What really impressed me was the teamwork [among my care providers].

Everyone worked together, starting from the moment I was lying there on the sidewalk. The first responders talked to the EMTs, who talked to the ER, who talked to the surgeon, and the surgeon talked to the doctors, and the physical therapists in the follow-up. It wasn’t just “a handoff and you’re done.” The doctors, the nurses, the caregivers were invested in me all along my recovery.

It created this Culture of Health within a team—and they learned so much from each other. When I would get fit for a new leg, my prosthetist would call my physical therapist and say, “She can’t run today” or, “Let’s not put a ton of pressure on her leg.” My physical therapist would say, “She’s being limited; we need to get her a new leg.” It was just a full team effort.

Doctors [often] spend so much time saying, “OK, now tell me what happened last time?” and you spend half your appointment going over what happened. That’s a waste of everyone’s time. If we can work together as partners and as a team, we’ll get better care.

Shaheen: What would you tell providers who are interested in coordinating care more effectively?

Adrianne: I think I’d say, “Let’s communicate.” There are some organizations here in Boston, like the Schwartz Center, and they believe in compassionate health care. I had the pleasure of speaking at their event to honor a surgeon who I call my Superman. They work together to breed a team of health and really put the emphasis on team.

Some doctors do these amputations all the time, unfortunately—whether it’s a sudden accident, diabetes, cancer or any other reason—and [yet] they don’t know what happens next. My doctors had never gone to the most popular rehabilitation [facility] in the country they were sending their patients to. Together we toured the facilities, and a lot of them had thought-provoking questions that started discussions. I think that’s important.

I had a discussion with a doctor once who said, “Everyone has to pass ‘the Mom test,’” meaning, “Would you treat this person this way if it was your mom and not your patient?” That will make a world of a difference in a patient’s comfort and health.

Shaheen: Is there a message you’d want to share with others who are committed to building a national Culture of Health?

Adrianne: Be open to all input. It’s based on personal experience. Someone could have a really different experience than I did and maybe they want to have one doctor who will do it all as opposed to a team. But I think I would tell them to listen and to ask for patient testimonials on what they experienced and reach out to the healthcare community. [For example], what did they think made a difference in someone that they operated on and treated and did not recover as quickly as someone else who did?

When we were all treated at Boston Medical Center [last year], they normally do rounds of nurses and everyone works different days. From the moment each of us ended up on the trauma floor, they purposefully switched the schedule around so we could have the same nurses. I know that’s not always possible, but in traumatic global events like this it made a world of a difference to see a familiar face. So I think hearing these testimonials will have you say, “I never thought of it that way before.” I think that’s powerful.

Shaheen: What’s next for you?

Adrianne: Next is getting through the 2014 marathon, and watching my brothers cross the finish line. I’ve [also] had the pleasure of getting in public speaking over the past six months, and it’s been instrumental in my own personal strength and growth through this new normal. I hope to do more of that.

I also want to create more awareness around female prosthetics and getting the skins and synthetics covered by insurance. Right now, most prosthetics look like robots, like something out of The Terminator. That’s because most of the people who need prosthetics are wounded soldiers and therefore most of them are men.

This is fine, but there are far too many women who are hiding and covering their bodies. They’re very self-conscious and unable to go out in public because they are unable to afford the synthetic covers. I think that’s an important thing to be aware of: it’s not just about looks, it’s about how you feel about your body, and how you carry yourself through life, which will directly affect your job, your friend network, and your social well-being.