Foreword

Lying in bed on the sixth floor of Yale-New Haven Hospital, I watched as snow fell outside the window. It was the first weekend in March 2009, and the weather was typical of early springtime in New England: gray overcast skies peppered with spiky ice particles. I know I had regained consciousness a few days earlier, but my first post-trauma memory is that view of the snow falling.

It was almost three months since I had arrived in the ER, and just a few days since I had been moved out of ICU. IVs and other tubes and wires were attached to my body, and monitors beeped behind my head. Propped up with pillows, there was a rigid collar around my neck and my left leg was gone. I knew then that my life—as I had known it—was over. Nothing would be the same as it had been before.

I was the first amputee I’d ever met. Not only had my body been broken, my life plan had been shattered, and I had no idea what the future held. Faced with unknowns, a muddled brain and battered body, it was tough to imagine my future. I asked myself, “Is my life over?”

Eight months earlier I had traveled to Bandiagara, Mali, a rural village in one of the least developed countries in Africa, to begin a 15-month volunteer post as a business advisor to an eco-tourism development project. One morning in early December the project coordinator and I traveled to another small village to follow up on an irrigation project. While we were there, a water tower collapsed, crushing both of us. Local workers lifted slabs of stone and concrete to find me alive but unconscious. Tragically, my colleague did not survive. I regained consciousness as the men loaded me into a pickup truck for the 40-minute drive over rough terrain back to the village hospital.

Local Peace Corps Volunteers and friends mobilized to help me, despite their grief over our friend’s death. They contacted the US Embassy and arranged for me to be medevacked to the nearest trauma center, the American Hospital in Paris. I have no recollections of the time I was hospitalized in Paris, nor the medevac transfer to the United States, but when I woke up in a bed at Yale-New Haven Hospital (YNHH), I was not surprised to see that my leg was gone—I had seen my broken body after the accident.

My medical history still shocks me: nearly every vertebra fractured, including C1; several broken ribs; punctured spleen and gall bladder; head injury; broken bones, including an open fracture of my left femur and multiple fractures of the left tibia and fibula. On arrival at YNHH, the trauma surgeon knew immediately that my left leg could not be saved and performed an emergency amputation.

Complications arose as an infection of unknown origin spread through my body. I was in ICU as my dedicated medical team combatted the infection, performing surgeries nearly every day in December, January, and February—including holidays Christmas Eve, Christmas Day, and New Year’s Day. While they searched for effective treatment, my body was nearly overcome by the infection. Abdominal compartment syndrome threatened multiple organ failure. Once the foreign origin of the infection was finally identified, life-saving treatment was administered.

By the time I regained consciousness in mid-March, my broken bones had healed (except for the C1 fracture—I had to wear the rigid collar for a while longer), the infection had been defeated, and my body began to recover. Because of the multiple debridement procedures, skin had to be grafted onto my left residual limb. There was also a temporary patch of grafted skin on my belly, a consequence of surgery to relieve pressure in the abdomen. Both the grafts and the graft donor sites were still bandaged when I was released to a rehabilitation hospital and remained bandaged for months afterward.

My Life, As I Had Known It, Was Over

After three months in ICU, I had wasted away. I’m a small person to begin with, just over five feet tall. I was strong and healthy when I was injured, but by the time I was released from the hospital I had shrunk to 85 pounds and my calf was the size of my wrist. For several days my hands were too weak to open a bottle of water, and were not coordinated enough to write my name. With the aid of a walker I could stand for a short time and take a few hops. Besides my physical weakness and the unfamiliar hospital environment, I just didn’t feel quite like myself. It was difficult to pinpoint and difficult to explain to others, but something wasn’t quite right in my head: it felt like there were spots of my brain that had gone dark and I couldn’t find the light switch. My memory was unreliable. Word finding, focus, and concentration were all damaged. Reading was tiring. I felt vaguely muddled overall, and sometimes it was not easy to differentiate between real and false memories.

I couldn’t deny my feelings of hopelessness. I was emotionally delicate and physically fragile. Before the accident, I had been on the threshold of a meaningful career track. Now those dreams were dashed and my life plan was erased.

There are so many questions, and as patients with a new disability we don’t know where to find answers. After long-term ICU stays, whether from trauma or disease, anxiety about an uncertain future is to be expected. Not knowing when I’d be able to walk again, live independently, care for my dog, drive a car, get a job—all of these unknowns caused a constant hum of anxiety with the potential to spiral into depression.

Post-ICU Syndrome

My symptoms were typical of long-term ICU patients, a constellation of symptoms known as Post-ICU Syndrome, or PICS. Similar to PTSD, PICS patients typically suffer from brain fog, memory loss, physical weakness, depression, nightmares, or night terrors. They can be in danger of being unable to move beyond their fear and experience anxiety as endless uncertainties tumble like a hamster wheel in their head.

Compounded by the physical, mental, and emotional impacts of a long-term ICU stay, anxiety and depression are common symptoms of PICS. Advice that I received—and that I now share with new amputees and trauma patients—is to focus on the present, especially during your initial recovery. Start by tackling today’s challenges. Take one step at a time. Regain your health and mobility first. When you’re relearning the basic activities of daily living, it’s too early to worry about your long-term future. To keep myself occupied and avoid dwelling on the big questions about my future, I tried to focus on my recovery and rehabilitation program.

Key factors that can aid in PICS recovery include social connection, supportive communities, and individual purpose. I may never fully recover from the traumatic experience that left my body disfigured and my mind scrambled, but by accepting help from others, staying connected with friends, and finding new activities and interests, I began to live and eventually to thrive¹ despite my disability and the side-effects of PTSD and PICS. Unwittingly, the actions I took mirrored the recommendations of Watkins-Hayes’ model, moving from “dying from” to “living with” to “thriving despite”: those steps include education about and self-advocacy for my needs, establishment of formal and informal support networks, and a newfound sense of purpose.

First Steps

Why didn’t I fall into a black pool of hopelessness? With the love of my family and friends, medical support by physicians and therapists, mental health counseling, amputee support groups, and disabled sports clinics, I was able to gradually make progress toward accepting my body and regaining my life. I recognize my good fortune and am grateful: everything has changed, yet I am determined to continue to move forward, to love life and have new adventures.

To learn to live with my disability, move forward, and thrive, several factors were key for me:

• As a foundation, access to proper medical care, including appropriate assistive devices and therapies, physical therapy, and a healthy diet and exercise. I was fortunate to have good medical insurance coverage through my employer, then extended with COBRA, and in 2014 passage of the Affordable Care Act assured my continued access to healthcare. An additional formal support system was sessions with a therapist who specialized in working with people with disabilities.

• A solid support system from my family, friends, counseling, peer visits and support groups. While I was hospitalized, family members visited every day. They brought my laptop and I was able to catch up with friends on social media and email. These informal support networks grew as I became more independent and began to build new friendships and connections within my local community.

• Discovering a purpose I felt passionate about. I describe my entry into advocacy for people with limb loss as “accidental” because my interest grew after being stopped several times on the street and in parking lots, to be asked questions about my prosthesis. In response, I spoke frankly about my experiences as an amputee and trauma survivor. Often people were curious because they had a friend or family member who was struggling with limb loss. It was rewarding to be able to offer advice or guidance, or simply to point them to other resources. Eventually this led to deeper involvement with peer visits and legislative advocacy.

I also learned some key lessons:

Learn to Ask for Help

While hospitalized, my brother managed my care. After I was released, I lived with his family for six months while I received at-home nursing and physical therapy visits. My first—and most challenging—lesson was learning to ask for help. I’ve always been independent. At first, I tried to do everything myself but quickly learned that I couldn’t. I didn’t like feeling needy or bothering others with my problems; I felt diminished whenever I had to ask for help. But ultimately, I learned that those feelings and fears were mine alone, generated by my ego that insisted on trying to be self-sufficient. My family and friends wanted to help, and after a while I realized that their offers to help were truly expressions of caring. Now I tell others in the same situation, “The people who want to help you are the people who care most about you. By allowing them to help you, you are giving them a gift by allowing them to express their love for you.”

Talk to Peers

Peer communities and support groups exist for many groups: cancer survivors, stroke survivors, Alcoholics Anonymous, and also for trauma survivors and people with limb loss. As a new amputee, I knew nothing about my new state, nothing about what would happen next, how to manage it, or whether my life would ever return to normal. While in-patient at Gaylord Hospital (a rehabilitation facility), a physical therapist recommended I attend an amputee support group meeting that was scheduled for the following Thursday. I didn’t know what to expect, wondering how meeting others with limb loss (and possibly nothing else in common) could help me. At the meeting I learned that everyone else had had those same questions, was learning how to move forward, and had, to varying degrees, regained their lives. They knew what I was going through physically and emotionally because they had been in my shoes. In the support group we spoke freely about realistic expectations for prosthetics, working with a prosthetist, managing physical challenges, and treating discomfort and pain. They assured me that my fears about living with a disability were normal. We compared our “gear,” our replacement joints and sockets, and discussed the latest prosthetic technology.

The first person I met at the support group meeting was Todd, whose physical presence complemented his big personality. He had a custom foot and ankle that allowed him to return to his lifelong sport, golfing. I also met Mildred, age 93, who had lost her leg 26 years earlier yet still went square-dancing with her husband every weekend. These people and others I have met at support groups across Connecticut are my heroes. They continue to face challenges and every day decide to continue their lives doing what they love.

I had searched online and read about people living with limb loss; I had researched prosthetic limbs and sought counsel for mental health. But reading and watching videos was not as powerful as meeting and talking with other amputees. By having this traumatic experience in common, we were able to open up to each other. Like any painful life experience, it’s a relief to talk to someone who really knows what you’ve been through, a relief to know you’re not alone.

Meeting people who had returned to their favorite activities and actively regained their lives helped to alleviate my anxieties. This is one reason why support group meetings are highly effective, whether for amputee, trauma, cancer, or long-term ICU survivors. Meeting others who have had similar experiences, seeing that people have moved forward to live productive and satisfying lives, is reassuring. Seeing that others have overcome similar challenges, we know that we can too. This forward-looking perspective is an essential step in moving beyond “my life is over,” or “I may as well be dead,” or “I can’t survive this trauma,” to thinking, “I’m going to be able to live with this challenge.”

Try New Activities

Recreational activities I participated in pre-injury were downhill skiing, mountain biking (in CO and UT), and rock-climbing. I ran for exercise and practiced yoga every morning. While still in-patient at Yale-New Haven Hospital, the surgeon Dr. Kaplan, in response to my panicky question “What will I do now?” replied “You will be able to do anything you want.” Startled, and doubtful, I challenged him. “Really? How long before I can bike and ski again?” I asked. “Two years,” he replied confidently. Trusting his assurance helped me to look for a path forward, for specific steps I could take to return to my favorite outdoor activities. It took longer than he predicted, closer to five years, for me to return to outdoor sports, but his confidence gave me the encouragement to believe I could do it. I worked with a personal trainer to get strong again and swam regularly to build fitness. I attended adaptive recreation events to explore outdoor activities in a supportive environment: rock-climbing, kayaking, golfing, bicycling. Now that I live on the shoreline, kayaking has become a favorite. By 2010 I was skiing in Vermont and by 2018 I was surfing in Costa Rica. In 2019 I obtained Scuba certification and in 2022 I went diving in the Caribbean.

In addition to outdoor recreation, I returned to earlier creative interests like painting and knitting. I gave myself permission to try new things, such as silversmithing and mosaics. Even though I may not be able to ski or bicycle as well as I used to, I can learn to enjoy them at my current ability level and explore new activities.

One Step at a Time

Following my injury, I didn’t see much of a future, but over the next several months I learned to adapt. Post-hospitalization, my focus turned to regaining life skills that would allow me to live independently. I learned to walk with a prosthesis— at first with crutches, then with a cane, and then one day I left my cane in the car and I didn’t pick it up again. I relearned how to accomplish daily chores such as cooking, shopping, vacuuming—normal home tasks, whether standing or in a wheelchair. I found a job, moved into my own apartment, and my dog came to live with me again. Caring for him was a big step in learning the power of focus outside of myself as part of the healing process. Every day he needed a walk, giving me a reason to get out of bed and out of the house. Day by day, my life settled into a new normal as I learned to live with my disability.

Many friends, when they learned of my injury, called my family or sent notes of encouragement and—oddly, it seemed to me—congratulations on my bravery. They told me how strong I was to have survived, how I was a hero for my courage to face my disability. I didn’t feel like a hero and I didn’t feel strong. I felt weak and vulnerable and, honestly, afraid of the world. I knew that I was lucky, not strong or brave or courageous. I was lucky to survive, as my friend had not. I was lucky to have a future, whatever it may turn out to be.

Recovery and rehabilitation are a process—progression from injury or illness back to life, from fear and despair back to hope. It starts with one step—followed by another step, and another—to move forward.

My “New Normal” Life

By 2014, six years after my injury, I had settled into a new life, my “new normal.” I moved to a cottage in a small coastal town in Connecticut, close to family. I have found new friends and built community connections, forming a living web that supports and protects me.

Connections—family, friends, community—have been the key to my process of regaining my life following traumatic change. They create a network of support and also responsibility. Support groups are one important part of that network, providing support for the specific needs of survivors of trauma, cancer, limb loss, etc.

Over the next few years, I became more and more involved in amputee advocacy. Working together, my friend Herb (also an above-knee amputee) and I led efforts for new legislation in the State of Connecticut to protect health insurance coverage for prosthetics. We formed the Connecticut Amputee Network to organize grassroots support for the law and for limb loss education efforts. With strong backing from our local State Senators and Representatives, legislation passed in mid-2018 and became law in 2019. Advocacy for the limb loss community became a central activity of my new life.

After passage of the Connecticut State law, Amputee Coalition invited me and Herb to become Lead Advocates and to join other limb loss activists across the country to advocate for insurance protection at the federal level. In 2019 we participated in “Hill Day,” visiting our Connecticut Representatives’ and Senators’ offices on Capitol Hill in Washington DC to discuss the need for a federal law to protect insurance coverage for prosthetics and to ask for support funding the National Limb Loss Resource Center. We were invited to speak at the Amputee Coalition 2019 Annual Conference and 2021 Virtual Volunteer Summit. Herb and I continue to work together to train certified amputee peer visitors and to educate healthcare workers about the effectiveness of peer visits and support groups in improving long-term health outcomes.

Reassessing Treatment

Looking back on my experience as a survivor of trauma and PICS, I can see where formal treatment options succeeded and where they fell short. Many of the key elements in my recovery and rehabilitation had been established long before my injury, yet some of these can be integrated into a multidisciplinary PICS treatment protocol.

1. Include in-patient peer visits.

2. Review home situation to ensure it can accommodate or be adapted for patient.

3. Provide psychological assessment for PTSD and PICS, including recommendations for treatment and scheduled follow-up. A full neuropsychological evaluation was helpful for me to understand posttraumatic changes to my mental capabilities.

4. Assess caretaker’s anxiety and stress and provide referrals for support.

Forward!

Building new friendships, maintaining longtime relationships, caring for my physical health, and exploring a purpose I’m passionate about have been key to building a new self-identity. I’m able to use my personal experience to advocate and help people with limb loss regain their lives. In this sense, my disability has become a strength. The thing that I did not want to be recognized for has now become something about me that stands out—literally. I wear shorts and skirts no matter how often people notice or stare. My disability is a part of me now and I continue to live my live—not only living with my limb loss (and the accompanying trauma and PICS) but thriving despite it.

The shift from “living with” my disability to “thriving despite” it is a result of finding a purpose I’m passionate about that promotes positive change to help others living with limb loss. Amputee advocacy takes me outside of myself—my worries, desires, pain — to focus on helping others with similar challenges, putting my traumatic experience to good use supporting the limb loss community.

There are still setbacks. The process of learning to live with my disability, for me, is not over. My limb continues to change over time, causing the fit of my prosthesis to change. I still suffer from chronic (though well-managed) pain, and though in some ways I have become more capable and mobile, there remain things that I have not yet been able to relearn. Daily I see the mutilated skin on my residual limb, the scars on my sound leg that were sources of the skin grafts for my amputated limb, and the scar that runs from my sternum to my pelvis. No one easily accepts the permanent damage major trauma causes to their physical body, but by now I have accepted my prosthetic leg as part of me, part of my self-image, and am not ashamed to show it.

Reflection

As I write this, the COVID-19 pandemic is beginning to subside in the United States. During the pandemic, while we were encouraged to stay home and limit time spent in public places, I felt as if time paused while we all hibernated. Yet while we sheltered in place, nature moved forward outdoors.

Here in New England, springtime doesn’t arrive suddenly or all at once. Instead, tiny steps lead to a burst of buds and blooms. Now, in May, I’m watching goldfinches turn from dull gray to bright yellow and the rose hedge transform from a thicket of sticks to a bouquet of chartreuse and pink. Spring is defined by the change from chill to warmth and from drabness to bright colors. Sometimes, in New England, the transition is subtle and we don’t recognize we’re in the midst of it until—all at once, it seems—we feel the summer sun on our faces and sizzling sand between our toes. Similarly, I can’t identify the exact date that I was “recovered”—was it when I stopped using a cane? or when my nightmares ceased?

Rehabilitation after major trauma and recovery from PICS is a long winding road. Following injury, progression back to health and hope is a process of a thousand steps—and sometimes falling backwards before again moving forward—with each step building upon completion of the step before, always toward a new future. Looking back, I can identify the phases I’ve passed through to get to where I am now, from dying to thriving, though I did not see them at the time. Challenges continue, some symptoms of PTSD and PICS continue, but I am content and know that I will be able to live with and thrive despite the after-effects of trauma and limb loss.

Brenda Novak, JD

May 2021

The framework I use, “moving from ‘dying from’ to ‘living with’ to ‘thriving despite’,” to describe my recovery from major trauma was created by Celeste Watkins-Hayes in her 2019 book, Remaking a Life: How Women Living with HIV/AIDS Confront Inequality. I have used it here with her permission.