Limb Loss Or Life Loss
Hi, everyone! I am Suranjana Ghosh, an Osteosarcoma survivor and above knee amputee from Mumbai, India. Most people mangle my name, so I go by an abbreviated version of it, which is Su.
I am here on The Active Amputee, to share some of my experiences and perspectives from being a South Asian, brown woman with an acquired disability. For this first post, I’d like to start by telling you a bit of my story.
A Mysterious, Nonstop Pain
I was a teenager, a student of Fashion Design and in my first year of college in late 1993 when I discovered a painful bump below my left knee. I was puzzled, because I hadn’t injured myself. Over the next few weeks and months, it grew to become a 24/7 throbbing pain. I couldn’t flex my foot and I realized the pain prevented me from running or walking fast. My skin stretched over the bump and was increasingly tender to the touch. Winter turned to early summer and when I was visiting my parents during a mid-semester break in March 1994, I mentioned the mysterious, nonstop pain to them.
Things happened in quick succession after that. My parents took me to a doctor, whose expert eye knew this wasn’t just some random knee pain. An x-ray followed by a biopsy and then a CT scan, confirmed the doctor’s worst fears. It was Osteosarcoma and a rapidly growing tumour was lodged on my left tibia.
We were recommended to consult a doctor in Southern India, who was trying out an experimental form of limb salvage surgery. When I met him, I first learnt about my Cancer prognosis. My immediate response was, “Why me?” and my second reaction was, “Will I lose all my hair?”
At that age, I was more concerned about losing my hair from the aggressive chemotherapy I would now require. Little did I know, I was also going to have my mobility altered forever.
The limb salvage surgery meant removing the knee joint, some portion of the femur and a large part of the tibia of my left leg. These would be replaced by a titanium implant. Amputation as an option wasn’t discussed in detail, and I was just happy I was going to get to keep my leg pretty much intact.
Chemotherapy And Surgeries
The reality was different. I underwent my first surgery in June 1994 after four cycles of pre-op chemo. Soon after, I realized there was very little flexibility in the knee, thanks to muscle wastage and a stiff titanium knee joint.
Months of painful physiotherapy later, I had barely achieved a few degrees of knee flexion, and was always forced to sit with my left leg stretched straight out. A nerve had been disturbed and I developed a marked foot drop as well. Even as I learnt to walk from scratch and resumed college, I kept undergoing chemotherapy.
Some months later in the summer of 1995, in the middle of a regular day at college I suddenly collapsed in a heap while walking. Classmates carried me to a restroom, where I discovered the left leg was hanging at an odd angle from the knee. An x-ray showed I’d suffered a stress fracture. The implant had broken at its junction with my tibia. Back I went, for my second limb salvage surgery. Another implant replacement. Learning to walk all over again.
I know this may sound like a particularly bad joke, but in less than a year I suffered another implant fracture! I was riding pillion on a motorcycle with my brother. It was a Sunday evening in January 1996. We took a fall and I was thrown off the bike. Both of us had scratches, but no major injuries.
Imagine my horror, when I discovered I was unable to put my weight on the left leg. I spent months on crutches, avoiding surgery for as long as I could and finally underwent my third limb salvage surgery and implant insertion in October 1996.
I repeated the whole drill again – post operative physiotherapy, relearning to walk, ditching the crutches as soon as I could. I was 21 and this was the third time I was doing this – I was becoming quite the pro! The chemotherapy had stopped, the Cancer hadn’t spread thankfully.
Facing Hard Choices
A few months later in June 1997, there was suddenly a little hole that appeared on my left shin. A steady stream of viscous liquid began to flow out from it. The implant had developed an infection and the mix of corroded metal and pus was difficult to check, even with multiple layers of bandages. I was losing close to 1000cc of fluid a day from my body. My weight dropped to a skeletal 40 kilos.
This time, the surgeon didn’t hold out any hope for me. My tibia was now too depleted to sustain another surgery and refitting of an implant. He gave me two options. One, remove the implant and leave me bedridden for many months to see if the infection would heal. Two, opt for an amputation to be sure the infection was rooted out.
It had been three and a half years of constant surgeries and I was exhausted by this time. I was ready to throw in the towel, but something made me consider amputation. I asked the surgeon, if there was anything I could read to prepare myself for what to expect. He was utterly unhelpful and suggested instead I watch an Indian film about a real life dancer who is a below knee amputee.
My access to the internet was nonexistent at this time. I needed to take a quick decision. I had no information on what to expect, how to prep and recuperate from an amputation. Overnight, I made up my mind and elected to go in for it.
A couple of days later, I walked for the last time on my own two feet to the operating theatre. The night before, I had painted my toenails a lovely, silvery lilac. The nurse asked me why I was bothering with nailpaint, when I was undergoing a surgery the next morning. I replied, “Because it’s the last time I’ll be painting all ten of my toenails.”
Nothing Prepared Me For The Horrors Of Phantom Pain
When I gained consciousness after the surgery, nothing had prepared me for the horror of phantom pain. It was real and yet my leg was no longer there. Was I imagining things? All my severed nerve ends were flashing alarmed messages.
My right foot was going crazy trying to locate its mate. My body felt diminished and took up a small portion of the wide hospital bed. I couldn’t bring myself to look at the left side of my body. I rolled over and couldn’t balance myself if I tried to lie on my side.
The pain was excruciating for the first couple of days. At one point, I almost considered taking my life. I was 22 and the future seemed to stretch ahead - uncertain and bleak. Insomnia plagued me.
I was surrounded by my parents and a family who looked after me like their own. The children were a little younger than me, and their banter and playfulness kept me from slipping into an irretrievably dark place.
When I was discharged from hospital, I gradually learnt to balance myself on the pot without sliding right off it. My stump was on the smaller side. I had quite a few falls in those early days in the bathroom. I discovered I was going to be very dependent on my two crutches. I grew painfully conscious of the unkind or sympathetic stares and nudges I invited, when people saw the empty flap-flap of my jeans’ left leg.
The turning point came one rainy afternoon, when I was introduced to a famous surgeon who was in transit. That day, he told me something that has become the byline for the rest of my life. He said, “The number of things you will still be able to do, will always outnumber what you can’t any longer.”
I had lost a big piece of my body forever. Now, it remained to be seen if I would allow this to steal a big part of my identity as well. Would I be diminished or defined by my disability?
To be continued...
Guest post by Suranjana Ghosh. Suranjana is a senior Marketing Communications specialist based in Mumbai/India who has worked in several multinational firms. An Osteosarcoma survivor and above knee amputee for more than two decades, she is an accessibility solutions enthusiast. She loves storytelling through prose and photography and believes these are important tools to mainstream disability narratives and debunk common misconceptions.