Voices of Limb Loss: A Bionic Perspective Series

Voices of Limb Loss is a written interview series from The Bionic Perspective. One community, every voice, told in their own words: people living with limb loss and limb difference, and the prosthetists, clinicians, researchers, and advocates who dedicate their lives to this work. No manufactured narrative. Every participant reviews and approves their story before it is published.

Todd’s Story, Part One

Before we talk about limb loss, who is Todd?

At my core and at my best, I try to treat people with dignity and respect. One of my favorite things in the world is making people laugh and laughing alongside them, but just as important to me is making people feel heard.

I have always been someone who wants to know people beyond the surface. Some might call that nosy. I see it as wanting to understand someone beyond their job, their family, or the basic details of their life. I want to know what makes them tick.

I love deep conversations, although I have not always been brave enough to have them. As I have gotten older, I have made a conscious decision to pursue deeper friendships and more meaningful connections.

After my cancer treatment and amputation, I spent many years isolated from the world. When I came back out into it, I was almost white-knuckling the experience. I was trying to rediscover how to build friendships and connect with people.

The quality I am most proud of is my ability to sit down with someone, have a genuine conversation, and help them feel heard. Friends have described me as someone who will do anything he can to help another person. That has also been true professionally. After a recent layoff, former colleagues told me what they remembered was not simply the work I completed, but the way I treated people.

I want people to walk away from knowing me feeling comfortable, supported, and like they have someone in their corner. Am I always successful at that? No. I am human, and humans are not perfect. But it is something I work toward every day.

One thing people may misunderstand about me is my quietness. When I am out with people, I try to be engaged, excited, and part of the group. But there are also times when I need to be quiet, recharge, and process. If I do not give myself that time, everything begins to pile up, and I cannot be the kind of friend or family member I want to be.

What was your life like before your diagnosis? Who were you before cancer entered the picture?

I grew up in Palm Bay, Florida, and later attended the University of North Florida in Jacksonville. I have often described my life in terms of before cancer and after cancer, but there were several moments like that: before and after my parents’ separation when I was nine, before and after becoming estranged from my father, and before and after leaving for college. For this part of the story, it makes the most sense to begin with who I was in college, shortly before my diagnosis.

I struggled enormously when I first moved away. Jacksonville was only about three hours from Palm Bay, but to me, it might as well have been the moon. I had always been a homebody, and I was extremely close to my mother and grandmother. Going to college did not feel like an exciting adventure or an opportunity to find myself. For the first couple of years, it often felt like torture. More than once I talked with my mother about whether I could continue, but somehow, I stuck it out.

Even before college, I had been experiencing strange and severe pain in my left hand. I had seen doctors and received explanations such as tendinitis, but no one seemed to understand what was really happening. The worst pain was between my index and middle fingers. If someone bumped my hand in exactly the wrong place, the pain could literally bring me to my knees. Once, my mother pulled up the emergency brake in her car and accidentally struck my hand with her elbow. I sat in the passenger seat for what felt like twenty-five minutes, waiting for the pain to subside. I now know the pain was connected to the cancer, but at the time, it was simply a strange and frightening part of my life that no one could explain.

Outside of that, I was incredibly shy. In high school, I loved editing clips and setting footage to music, but I could not bring myself to appear on camera. I was afraid of being judged. Looking back, my harshest judge was usually myself.

My first two years at UNF were difficult, and one of my closest friends played an enormous role in helping me survive them. There were laughs, tears, good moments, and bad ones. I will never forget how much her friendship meant to me.

By my junior year, life had finally begun to feel settled. I had known for several years that I was gay, but I had initially shared that with only a few people, including that friend and my mother. I came out to my mother in a Walmart parking lot after she asked why I had been going to Walmart so often. The honest answer was that there was a cute guy working the register in the garden department, and I wanted to see him.

That year, I met the person who would become my first serious partner. I will leave his name out to respect his privacy, but I was head over heels from the moment I saw him. He was European, charming, funny, sweet, and seemed to embody everything I imagined a fairy-tale relationship would be. I may have been wearing rose-colored glasses, but I was genuinely happy.

For the first time since leaving Palm Bay, things were beginning to go well. I had close friends, a stable home, and a relationship that felt full of possibility.

Then cancer entered the picture.

When did you first realize something was seriously wrong with your hand?

I was still in the honeymoon phase of my first serious relationship. I was completely smitten. That was probably one reason I did not pay closer attention to what was happening with my hand. I have always been very good at avoidance.

Between the index and middle fingers of my left hand, I began to notice a visible lump. The pain and stiffness had already been there, but now there was something I could actually see. The lump grew quickly, over the course of about three months.

I vividly remember standing on the bridge between our dorm and the main campus, I believe with that same close friend, and looking down at my hand. Somewhere inside me, I knew something was seriously wrong. I also knew that I did not want to deal with it. Part of me feared that if I forced someone to look more closely, something terrible might happen. Ignoring it could not prevent that, but avoidance does not operate logically.

My memory of the exact timeline is fuzzy, but I believe I finally went home during spring break and made another appointment with the hand doctor I had been seeing for years. The moment he walked into the examination room and saw my hand, his expression changed. I immediately knew that this appointment was different. He sent me for what I remember as a same-day MRI.

The MRI confirmed a mass approximately the size of a golf ball, along with cancer that appeared to extend throughout my hand. The diagnosis was synovial sarcoma, a very rare form of cancer. Based on the symptoms I had experienced for years, it had probably been present for a long time before anyone recognized it.

After we received the news, the four of us sat together in the car, which I believe was my grandmother’s Jeep: my mother, my grandmother, my boyfriend, and me. We each reacted emotionally in our own way. Nothing felt entirely real. I believe we went to dinner afterward at a nearby crab shack. That detail has always stayed with me. We had just learned that I had cancer, and then somehow we went to a restaurant. I think we were all trying to continue moving through the world because none of us knew what else to do.

The doctor recommended either the Mayo Clinic in Orlando or Shands in Gainesville. He told us that if I were his own child, he would take me to Shands. That made the decision for us. Within about a week, I was in Gainesville being evaluated by an orthopedic surgeon and an oncology team.

From that point forward, everything became about survival. At the same time, my mind was racing through questions that had nothing to do with medical terminology. Would my boyfriend still want to be with me? What would happen to my friendships? What would I do when my friends continued with their lives and I could not?

All of those questions arrived at once.

What was it like hearing the treatment plan, and how did you come to agree to amputation?

My memory of that period is fragmented, but I remember lying in a hospital bed when the orthopedic surgeon and his nurses came into the room. They explained that the safest path forward would be to amputate my entire left hand. The cancer was too extensive, and the cleanest surgical margin would be at the wrist. They also recommended six months of extremely aggressive chemotherapy using Doxorubicin and Ifosfamide. I would spend several days in the hospital receiving treatment, have a short period at home, and then return to do it all over again.

I remember receiving the news and agreeing to the amputation. Realistically, what was the alternative? The alternative was potentially dying, and I was not ready for that.

I was 21 years old. I had a boyfriend, close friends, and a beautiful family. Even though I struggled with depression and anxiety, I had a life that I wanted to live.

I remained in Jacksonville while we traveled back and forth to Gainesville. My mother began taking up temporary residence in various dorm rooms on an air mattress. Sometimes she stayed in my room, sometimes in my friend’s room, and sometimes wherever else the logistics worked.

One memory is still completely vivid. I was sitting at the vanity in my dorm room, wearing one of my boyfriend’s button-down shirts. I loved that shirt because it reminded me of him and of my favorite book at the time, Call Me By Your Name. We were preparing to shave my head.

That was one of the first moments when everything started to feel real. Even then, the people around me found ways to make it less frightening. My boyfriend shaved his head in solidarity with me, something I will never forget. I remember laughter that day. Before he began shaving my head, he leaned down and kissed me. In that moment, I felt like I was going to be okay.

I remember most from that time my mother, my boyfriend, and everyone else simply pushing forward with what needed to be done.

Soon afterward, I went to Gainesville for the amputation. I remember almost nothing about the preparation, the operation itself, or the immediate recovery.

They gave me a nerve block, which became my best friend because it temporarily kept the pain under control. When the nerve block wore off, I experienced the most intense pain I had ever felt. I remember waking in the middle of the night, my mother and boyfriend both there, crying uncontrollably because the pain was so overwhelming. The doctors and nurses struggled for quite some time to bring it under control. In my mind, my body was in shock. It had lost a piece of itself, and I was feeling the physical reaction to that loss.

Much of what happened after that remains blurry. There are memories from those first 24 to 48 hours that seem to be completely blocked. My mother remembers things that I do not. I have been told that some of those moments were horrific, and honestly, I do not want to know what they were. The memories I have are enough.

At one point, the doctor asked whether I felt ready to look at my arm. I was heavily medicated and trying to be brave, so I told him, “Yeah, of course. Let’s do it.”

There is nothing quite like seeing the body you have known for 21 years suddenly missing a piece of itself. This was not a cut or a wound. My entire hand was gone. I looked at the staples and stitches where my hand had once been, and the experience was completely surreal. I understood intellectually what had happened, but seeing it made the loss real in an entirely different way.

I remember very little about the healing that followed. One of my college friends came to stay with me at home, perhaps for a weekend. By then, chemotherapy had started and I was not feeling well, so we mostly sat together and talked. In fact, I am sitting in the same room today where we had those conversations.

So much of that period exists in fragments: a hospital room, an air mattress in a dorm, my boyfriend’s shirt, the sound of people laughing as they shaved their heads, unimaginable pain, the first sight of my arm without my hand, and a friend sitting beside me at home.

Those fragments are how I remember the beginning of life after limb loss.

Looking back now, what stands out most about that chapter of your life?

I understand now that, by the time the lump became visible, the future had largely already been written. The cancer was already extensive, and the amputation was going to happen.

There was a time when I was angry about the years of misdiagnoses. Could my hand have been saved? Could my life have unfolded differently? I was also angry that it happened when I was 21, right when my life was finally beginning to go well. I was in love. I had become more comfortable with who I was. Then, almost immediately, everything became about cancer and survival.

The amputation was not the end of that chapter. In many ways, it was only the beginning.

I would spend about four days at a time in a hospital bed in Gainesville receiving chemotherapy. I felt hot, sweaty, nauseated, exhausted, and depressed. I was trying to process the loss of a limb while powerful medications overwhelmed the rest of my body. Then I would return home, my blood counts would fall, and fevers or infections would send me back to the hospital. My life entered a suspended state: go to the hospital, come home, and then go back to the hospital again.

One memory from that period has never left me. I had returned home after several days of chemotherapy when my blood counts dropped, and my oncology team determined that I needed to be transferred back to Gainesville. It was late, I was sick, and I had a fever. I traveled about three hours from Palm Bay to Gainesville in an ambulance. I remember being strapped to the gurney, with very little ability to move. I could see only small pieces of the world through the ambulance windows. At some point, we crossed a bridge in Orlando with distinctive arches. I do not remember the bridge’s name, but I can still see those arches. That image has remained with me all these years.

My boyfriend offered to ride in the ambulance with me. Although our relationship ended a few years later and we have not spoken in a long time, I will never stop being grateful for the support he gave me when I was sick. He slept in uncomfortable hospital chairs and on small couches. He traveled from Jacksonville to Gainesville while he was still attending school so he could sit with me. We would talk, spend time together, and try to create small pockets of normalcy inside a life that had become anything but normal.

We had only been together for a few months when I was diagnosed. A therapist might look back and identify codependency or unhealthy attachment within parts of that relationship. That may be true. But there was also trauma, and we were both responding to circumstances neither of us was prepared to handle. There is no bad blood between us. Our lives simply moved in different directions. Whatever else the relationship became later, he was there when I needed him, and I’m grateful.

The other person I cannot tell this story without mentioning is my mother. She handled virtually everything: appointments, travel, paperwork, hospital stays, and the endless practical needs that accompany serious illness. She was also there when I was at my absolute worst. She heard some of the worst things I said when I was overwhelmed by pain, fear, sadness, and depression.

And she stayed.

People sometimes assume that a mother automatically has to do those things for her child. As I have grown older, I have realized that is not necessarily true. I was 21. I was legally an adult. Every trip she made, every hospital room she slept in, and every difficult moment she endured represented a choice she made to support me. I will always be grateful for that.

There were many other acts of support as well. People in my hometown organized fundraisers. A local bar held a motorcycle run. A restaurant donated a portion of its sales to help my family cover expenses such as gas and food. At the time, I do not think I fully comprehended what any of it meant. I was in survival mode, concentrating on getting through the next treatment, the next fever, or the next hospital stay, while the people around me helped carry me forward.

When I look back at the 21-year-old version of myself today, I see how strong he was. He did not believe he was strong at the time.

There were moments when he did not believe he would survive. There were moments when he was furious and wanted to throw in the towel. There were times when he thought, “Fuck this. What is the point? My life is ruined at 21.”

I understand why he felt that way.

But I am incredibly grateful that he stayed. He kept going through the amputation, the chemotherapy, the infections, the hospital transfers, the fear, and the years of rebuilding that followed. He could not yet see the friendships he would form, the technology he would experience, the stories he would tell, or the person he would eventually become.

He had no way of knowing how much life was still ahead of him.

Today, when I think about that kid, more than anything else, I am proud of him.