<p>"Most of us will never know how the world sees us. Ana always will. Most of us assume the world accepts us for who we are. Ana can’t. She knows the blatant stare, the averted glance, the pointing-out. She knows the pity, the presumptions and exaggerated concern.</p>
<p>She doesn’t like the attention, and she doesn’t completely understand it. Over the years, shyness has become her primary defense, the only power she can exert over circumstances beyond her control.</p>
<p>When I met Ana, I made the association to Joseph Merrick, the famed Elephant Man, whose appearance, notably captured in the 1980 movie by David Lynch, was similar to hers. I assumed that like Merrick, Ana had found the terms of her life defined by disfigurement, in her case the result of a genetic condition affecting the protein that regulates cell division…</p>
<p>The symmetry of eyes, ears, nose and mouth, the arrangement of hair and the line of the jaw help convey critical information, such as age, sex, ethnicity and emotion. They also give rise to assumptions about kindliness, stupidity or even malice that, right or wrong, establish our initial understanding of one another.</p>
<p>Throughout her life, Ana has had to face these assumptions – the child who cried in fright upon seeing her, the strangers who hugged and blessed her – and she has had to adapt to the isolation and helplessness they created.</p>
<p>She may have felt normal, but normal isn’t something we decide upon ourselves. Normal is acceptable, and acceptable is in the eye of the beholder…
[Step</a> by surgical step, a life is transformed - Los Angeles Times](<a href=“Step by surgical step, a life is transformed”>Step by surgical step, a life is transformed)</p>