Lessons I've Learned From Being Born With Arteriovenous Malformation


When I was a child, I would wake up and wish I could somehow vigorously scrub the arteriovenous malformation (AVM) off my face. I always asked a plethora of questions. For example, “Why me?” “Why am I chosen to look abnormal?” “Why can’t I be like everyone else without a malformation?” I’m glad it wasn’t that easy to just wash it away, or I wouldn’t have all the unspoken lessons and hurtful experiences I’ve learned all these years that have shaped me into who I am.

The author as a baby

I was introduced to the world on January 8, 1996, when technological innovations and research on this rare disease were scarce. The AVM was not present at birth, but just over a few months, my parents noticed red specks and a slight swelling on my right cheek. They knew something was wrong and immediately took me to my pediatrician. After that, I was referred to many doctors. All I can remember when I was a child was hating to go to the doctor’s office. I would hide from my parents on the day of my appointment. After visiting many doctors, I was misdiagnosed and a guinea pig for multiple operations with surgeons who do not specialize in my rare disease. Despite knowing all the complications and risk factors, my parents signed their name at the end of the paperwork and went forth with the procedure, I believe just so I could fit in with society’s standards of looking “normal,” whatever that means. Bottom line is, those procedures did not make any drastic changes, and I am left with the permanent aftermath: scars. I faced a hard reality and lost hope in treatment after four unsuccessful surgeries. I began to gradually accept living with AVM.

 

Fast forward to current 21-year-old me. My arteriovenous malformation has grown in size and has spread all the way to my nasal area. My face is more unsymmetrical than ever, and I have not had treatment for almost a decade now. It has been a part of my identity, and when I look at myself now, I don’t see myself as any different. Despite seeing this as a curse growing up, I believe it is a blessing in disguise. Because I was born unique, I have learned valuable lessons in my life that have driven me to be the best version of myself. I know what qualities I want to have and the character I want to become. I have developed a thick skin when I am being bullied or stared at by a stranger’s critical eyes. Being born unique is something I will never change. I am grateful for the woman I have grown to be and the impact I am making.

I am more than the girl with the rare disease. I am strong. I am compassionate. I am successful. I am Michelle Lai.

The author posing next to a small stuffed llama

We want to hear your story. Become a Mighty contributor here.

TOPICS
JOIN THE CONVERSATION

Related to Arteriovenous Malformation

illustration of two women talking

Debunking the Myth That 'No Two Lupus Patients Are Alike'

As anyone whose life was struck with a sudden, debilitating and permanent illness can attest, there are several stages of coming to terms with life-altering implications of one’s disease. More often than not, its initial onset stirs a period of absolute confusion and a profound sense of aloneness. What is going on with my body? Why [...]
Fireworks in the sky.

Why Fireworks Are Difficult as a Person With Cerebral Palsy

Ordinarily, I forget. I forget about the fireworks. I forget about the sudden bursts of noise. I forget that the Independence Day festivities begin before July 4th and last for days after. I forget about the effect unexpected sensory stimulation has on my jangled nervous system. Every year in early July, I am jolted awake [...]

The Isolation We Experience Because of My Daughter's Rare Disease, SCID

You know that saying, “If you want to make God laugh, tell him your plans?” Well, I am laughing right along with Him! Boy, did I have plans. So many plans. Any parent can tell you that life changes after having a child. It is a warning I heard all too often while pregnant, “your [...]
Brunette woman walking the forest road

The Invisibility of My Chronic Pain

“Well, Taylor, all your tests came back normal. You are good to go.” These words I have heard over and over again. If I’m so “normal,” why am I constantly in pain? Why do I have to move around on the hour at night so my joints don’t hurt as much in the morning? Why [...]