Updated: Jun 25, 2020
| This is the 447th story of Our Life Logs |
I was born with a rare genetic disorder that wasn’t properly diagnosed until I was two years old. The doctors discovered I was suffering from scoliosis kyphosis. I could walk, but I had a very prominent rib hump that made sitting in a chair nearly impossible.
My life has been a mixture of blessings and curses depending on which part of it you observe. But it is the severity of the curses that made the blessings so sweet.
Although I was born in 1974 in Buenos Aires, Argentina, to Italian immigrants, we moved to the US when I was four years old. From as early as I can remember, I wore orthopedic braces and body casts until I was about 11. Not only did they make me look bulky and out of place, but they also invited a lot of ridicule from my able-bodied classmates. I never had friends with whom I could gossip or go to the movies—but honestly, I couldn’t even go to the movies because I couldn’t sit back in the chairs.
Even if anyone wanted to be my friend, my father never would have allowed it. While my mom was kind and supportive, my father was ashamed of me. He tried to hide me away and refused to let me go out and socialize. So, I spent most of my time doodling thin strokes of graphite into my notebooks. It was the only way I could live with the loneliness I felt. I was miserable, especially when the intensity of my illness skyrocketed.
When I was just 10 years old, the doctors discovered that I needed an emergency open-back surgery. They said that the type of kyphoscoliosis I had was deadly. My ribs were collapsing on my lungs and my spine was headed in the same direction, teetering on edge, with the chance of caving at any moment.
They caught in it in time to place a rod in to stop my spine from curving any further. Unfortunately, I spent the next three months in the hospital on the brink of death, recovering from a massive infection from the procedure. One wrong move and I would become comatose. Luckily, I had a great team of doctors behind me, and I physically recovered. But, I don’t think the emotional scars ever fully healed.
When I was 13, we moved to Florida where I still lived as a shut-in. While girls my age were going on dates and learning to drive, I was wallowing at home. Between my rib hump, the unrelenting pain, subsequent migraines, and the cycle of surgeries and doctor’s appointments, my confidence was lower than the bottom of a Florida swamp.
By then I was faced with the big question of, “What are you going to do with your life?” I wasn’t quite sure, but when a family friend who taught at the Fashion Institute of Technology in New York City suggested I apply because she’d seen my sketches on her visits, I obliged. It was the perfect opportunity to get away from my dad and start over. I applied. I was accepted. And for the first time in a while, I felt like I was free.
In 1996, I packed my bags and headed for the Big Apple to find my calling. I decided to study textile design, but I soon realized it was not the path for me. I much preferred drawing and painting to fashion. I had a wonderful art teacher, Susan Reitman, who always supported me and my work. She knew some of my past and motivated me to believe in myself. Without her, I may not have made it. I kept in the program, refusing to return to my restrictive home, and I graduated in 2000.
I was fully ready to begin drawing and pursuing what I wanted out of life, but something, rather someone, got in the way. With little idea of how I deserved to be treated after my father’s mental abuse, I married a man shortly after graduation who was abusive and cold to me. His venomous words and fists would cut deep into my soul, but it took me years to leave him because I didn’t think I could do better. In fact, I didn’t think I’d get another chance at finding love. I thought I was unlovable. I began to lose hope in myself and in my passions and found myself returning back to the 10-year-old in the hospital bed, waiting for more bad news.
In 2004, I finally mustered up enough courage to leave, but by then, my health took another nosedive. I had endometriosis, a painful disorder affecting uterine tissue. With another diagnosis came another surgery. Five, to be exact. And much like the other times, these surgeries brought complications. But none of them compared to the complication I faced in late 2004.
I was in surgery to correct my prominent rib hump. We thought it went well but about seven months later, because I had a very rare and aggressive type of kyphoscoliosis, the process caused my spine to collapse at a faster rate. At the velocity it was happening, the doctors told me they couldn’t help. They simply didn’t have the knowledge or tools to. I would have to start using a wheelchair and eventually die from the deterioration. The promise of death loomed over me.
The intense medication was the only thing keeping me alive, and most days I was bedridden and miserable. By 2006, I had a side curve of 115 degrees and a concave curve of 120 degrees. With only state insurance, no one could help me without putting me in deep financial debt. It was scary to know that my life was coming to end all because I couldn’t cover an over $500,000 surgery.
And so, I grabbed a handful of pills. I thought that if I had to wait to die, I’d beat it to the punch. But then…
As soon as they reached my stomach, I realized I’d made a horrible mistake. I called for my sister and begged her to take me to the hospital to have my stomach pumped. As she rushed to me, I slid into oblivion.
A dream came to me in my slumber. In it, a being (who I believed to be God) was surrounded by white light. I asked him, “Am I going to die?” He replied, “No. And remember, I am with you through every hard time.” And then, I woke up.
I didn’t grow up with religion or ever considered myself a Christian before then, but I felt a peace I’d never known.
Call it a miracle, call it fate, call it coincidence—two weeks later, I found the doctor who would later save my life. My brother came across a pamphlet on a plane for a business trip for Dr. Shelekov and his Texas-based team who specialized in correcting spines. When my brother relayed the news, we reached out to him. The kind-hearted doctor offered to perform the surgery pro bono, given my situation. It was going to be a very dangerous and long procedure (12 hours) but my desperation to live overcame most of my fears.
The doctor corrected my collapsed spine by adding two rods and 26 screws to my frame. He was able to minimize the rib hump by cutting nine ribs down, and I even grew five inches from the surgery! The success of my operation was called “a miracle” by Dr. Shelekov and his entire team. For the next few years I lived without all the pain I had once thought was permanent. I was free, for a while, to live a little better than before. But still, I wasn’t throwing myself back into my passions. I was simply coasting