I awoke from surgery to find that the doctor had removed not only half my nose but also half of my upper lip, muscle and bone from my right cheek, the shelf of my eye, six teeth, and part of my hard palate.
I was shocked by the severity of the procedure, but I was mostly just grateful that I still had my right eye, as that was the biggest risk I felt I had to face when I went into surgery.
My doctor promised to make me ‘streetable’ – a term I believed meant that I would be able to walk down the street like any other ‘acceptable’ citizen – before I left the hospital. What I didn’t realise then was that this was his way of preparing me for a life of disfigurement.
A few months before this surgery, my life was smooth sailing. Age 20, I was a junior at the University of California, Berkeley, a confident, athletic, successful student.
Many considered me handsome, and a few years earlier while in high school, I was even voted the homecoming prince. I was living life on ‘easy street’.
But that year, several people asked if something was wrong with my nose. My right nostril appeared to be flared out, and I eventually noticed a bump pushing against the inside of it.
When it didn’t go away within a week or so, I made an appointment with a doctor.
After initially telling me it was probably a pimple, he finally suggested a biopsy when it was still there three weeks later.
It turned out that I had a malignant maxillary tumour, a rare fibrosarcoma. I would later discover how lucky I was that I got the right diagnosis, given how few of these tumours pathologists see.
The bulk of the tumour was removed during the biopsy, but I underwent surgery to take out any of its remaining cells.
Fortunately, the procedure was minor and with only a few stitches, I returned to classes looking like I had been in a fight with someone.
But six months later, I discovered a new lump in the same nostril. Then my cheek began tingling. Numerous specialists confirmed that my tumor had spread.
Prescribing more surgery, my doctor warned that I might lose part of my nose, but his main concern was saving my life. I suppose I was too young to contemplate dying, but the notion of disfigurement was devastating.
However, when I woke from the surgery, the doctor informed me just how much had been removed from my face.
I was devastated, but was certain my doctor would get me reconstructed back to the ‘old Terry’ as we had previously discussed. Looking in the mirror, I saw the elephant man looking back at me and decided I wouldn’t look at my reflection for a very long time.
Within a few days though, I gathered the courage to get out of bed with my IV stand, desperate to move about. I walked the halls of the hospital, believing everyone who looked at me must have been convinced I was some kind of freak.
As I re-entered the world three weeks later, I noticed adults staring and children pointing — and sometimes laughing — at me. My hospital room had protected me; outside of it, I was vulnerable and exposed.
Of course, I cared what other people thought of me; I relished the admiring looks the old Terry had received. Now I was petrified of potential reactions to the new Terry.
During the following months, I encountered many friends whose occasional and inadvertently negative reactions left an indelible mark.
One of my fraternity brothers saw me walking down the hallway toward him, and all he could say was ‘Whoa’. Another had been overheard saying that if he were me, he would hide inside or hang himself. And one night at a bar I ran into an old high school friend who could only say ‘What in the f**k happened to you?’
Even worse, radiation treatments were shrinking my facial tissue, magnifying my deformity.
My self-esteem sank increasingly lower, and I constantly sought reassurance from others: ‘Do I look OK?’, ‘Is it awkward for you to hang out with me?’
During radiation treatment following the surgery, I re-enrolled in school and went back to work part-time. I wanted to be as busy as possible to ensure I didn’t dwell on my medical challenges or spend time worrying about a recurrence.
Five years and 20 reconstructive surgeries later, I was still plagued with insecurity.
During my last procedure, I met a woman receiving treatment at my hospital. We began dating, but after hearing me ask — for the umpteenth time — how she felt about my looks, she ripped into me.
The bulk of my problem, she informed me, was not my physical appearance, but my emotional insecurity. Her honesty helped me realise that my mental and emotional scars were far more disfiguring than my physical ones.
Once I got over the devastation that she was no longer interested in me, I began to realise how lucky I was that she had highlighted my greatest weakness.
With a fresh perspective, I realised that surgery wasn’t something I could control. What I could control was focusing on rebuilding what was inside.
I began examining myself from the inside out, and used prayer and support from loved ones to boost my spirit and self-esteem. I volunteered at The Wellness Community (now the Cancer Support Community) and discovered that helping others is great therapy.
I felt progressively better as I offered inspiration and hope to those coping with cancer. With time, my emotional pain subsided.
We all wrestle with insecurity. For me, it took something devastating to recognise that battle scars make people interesting and wise; trauma helps us appreciate life and prepares us for its inevitable adversities.
Today I am thankful for who I am — a much stronger and wiser person than the old Terry.
I am grateful for my experience because I appreciate every day of my life, and I am more forgiving and tolerant than ever before. I remain cancer-free 36 years after treatment.
I rarely notice people pointing or staring at me anymore. If I do notice it, I carry myself with confidence, so I don’t remember the last time anyone even asked about my face.
Yes, I get stares now and then in restaurants, or standing in line at the coffee shop. It doesn’t bother me any longer, as I am content with who I am today. I don’t stew about it. I am happy to be here, living for today.
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