Updated: Jun 27, 2020
| This is the 354th story of Our Life Logs |
Immediately after I was born in Pima, Arizona, in the spring of 1980, I was given up for adoption and sent to a Catholic orphanage. Within six weeks, a family came and took me home. My new parents were loving, good-hearted people who tried to adopt children with special needs who otherwise might not get the care they needed. They hit the jackpot with me. I guess I was the lucky girl in that sense, but unfortunately, I came with an array of physical problems that stemmed from a rare disorder called Wagner Stickler Syndrome, which made my life more than difficult.
Wagner Stickler Syndrome (known as Stickler’s today) is an osteo-optical degenerative disorder. It affects the connective tissues in the body; the bones and eyes usually suffer the most from the effects. In the 1980s, Stickler’s had two forms: A, which was mild, or B, which was severe. I had B and encountered many of the tell-tale symptoms: cleft palate (a hole in the roof of my mouth preventing me from swallowing my food), short chin bone with flattened cheekbones, as well as kidney malfunction and a heart murmur. I was also born deaf and blind.
By age five, I had undergone four surgeries to repair several of my issues. I had detached retina surgery in both eyes to restore my sight, tubes in my ears to restore my hearing, skin grafting to repair my cleft palate, and ureter replacement to correct my kidney malfunction. By the end of my stay in the hospital for my last surgery, all my veins in my arms and hands had collapsed due to overuse. As you can imagine, all these hospital visits and physical problems traumatized the little girl inside me. I became terrified of any doctor or nurse I encountered.
When I turned 13, I received very disturbing news from the retinal specialists. I had gone almost completely blind in my left eye. Over the next year I underwent four more surgeries to repair the vision. I suffered several side effects from the surgeries: violent bouts of vomiting, vertigo, migraines, and depression. My terror grew immensely every time the doctor said I needed another surgery. I begged my parents not to make me have each new suggested surgery, but of course, they wanted the best for me and didn’t listen to my pleas.
I sobbed as I was pinned down to be given injection after injection. I even kicked the nurses and tried to run. Even having to go to the nurse’s office for a routine check would cause me to break out into hives and cry uncontrollably. I had such a fear of the medical community and what they might find wrong with my body that I couldn’t be consoled. What’s worse was that I couldn’t explain my fear. I was met with frustration instead of understanding, which just added more stress and more tears.
All the years of other people making decisions about my body and talking about me even when I wasn’t sitting right in the same room took a toll on me. I began to hate myself as I entered my mid-teens.
One day, a friend was at my house and showed me a small cut she had on her leg. She said she cut herself on purpose. I was taken aback. Why on earth would anyone do that? When I asked her why, she laughed and said, “It makes me feel better.”
I looked at her like she was nuts, and that was the end of it. But, days later, I kept remembering that cut. It wasn’t deep or concerning to anyone who didn’t know its background. But, it fascinated me. Could it really be that simple? Could I “feel better” if I just cut my own skin?
The next time I began to have a panic attack, I decided to try hurting myself to calm my terror. I dragged my fingernails down my upper arm and large welts raised on my skin. Within minutes, a calm fell over me. She was right.
I was fascinated by the red marks. I went to the bathroom, carefully cleaned them and gently ran my fingertips across them. Feeling the pain on my arm helped me forget about the terror I had previously felt. Hurting myself was so therapeutic because bringing pain from the inside that you couldn’t “fix” to the outside where it was physically treatable gave me a deep sense of calm and relief. It was something tangible to focus on.
Over the next few years, I would calm my panic, rage or sadness by hurting myself. I would punch walls until my knuckles bruised and bled. I would viciously rake my nails down my body. I even began cutting myself with scissors, knives and my preferred choice: razor blades. I cleaned each of the wounds with care and bandaged myself up, making sure the cuts stayed above my t-shirt sleeve or hidden by pants. I never told anybody. It was my secret way of coping. Every time I bathed, and the water hit the wounds, I would sigh in relief. The cutting released endorphins which gave me a euphoric feeling I couldn’t otherwise feel. It was about control; controlling how I experienced pain.
I was always very careful with my cutting until, one time, I slipped up and it changed everything.
As a teenager, I continued living in constant fear of my health problems. Most of all, I was terrified I’d still lose my sight because even years after the surgery, I suffered from side effects such as flashes of light, eye pain, blurred vision and vertigo. I would see a sudden flash or feel a debilitating stab in my eye and panic. I’d be certain I was going blind right then. My heart would race, and my stomach would heave in terror. I just needed all the fear to stop.
I remember grabbing the razor blade from my desk drawer one day, and standing in front of my bedroom mirror. I glared into my own eyes, full of disgust for the person reflected at me. I brought the blade down on my flesh and began slashing. I couldn’t stop, the euphoric feeling taking over. I grew dizzy as the blood ran furiously down my arm. That’s when I snapped back to reality. I cupped my elbow to keep the blood from hitting the floor. My heart pounded in my ears as I tried to remain calm. I slowly walked into the bathroom, avoiding the mirror, and started the shower.
I wasn’t sure what else to do. I knew the cuts were bad, and they were bleeding profusely. There were so many of them that I couldn’t tell how bad it really was. I got in the shower and put my arm under the stream. Red water pooled at my feet with no signs of stopping. Eventually the bleeding did slow, but it did not stop.
I got out of the shower and grabbed a massive amount of toilet paper to shove against the cuts. When I made my way back to my room, I inspected the damage I had done. I needed stitches. There were several extremely deep cuts that were still bleeding. I cleaned them, bandaged them and put on a t-shirt. The irony was not lost on me that I had just inflicted damage that was bad enough I needed to see the people I would be most scared of—doctors. But I never went, partly because of my fear. I cleaned and bandaged those cuts for weeks. I put on butterfly Band-Aids and wrapped them loosely with gauze. The skin healed, but the physical damage was permanent, leaving keloid scars.
That was the last time I lost control and was also the beginning of the end to my cutting. I can’t say I stopped immediately, but I decided it wasn’t worth the fear of getting caught and having to tell my parents what I had done to myself. I knew they’d blame themselves and I couldn’t let them feel that devastation. I also knew I’d be locked up in a hospital for harming myself. People would assume I tried to kill myself, but cutting was never about killing. Cutting was about living with the terrors inside my own body. Yet, I knew then that I needed to make a change.
As the years went on, I found better ways to deal with my anxiety, depression, and PTSD from my childhood. I learned how to play guitar, and I started writing poetry and short stories. To help cope with my emotions, I started taking anti-depressants and anti-anxiety medication, which made all the difference.
As hard as it was at first, I began opening up at doctor appointments about my PTSD and all I had been through medically. I started to take charge of my own medical care. Through my healing, I grew up, graduated school, and got married.
At this point in my life, I can’t say I have completely healed from what I suffered as a child and the effects I still have today from my disorder. I still battle with my anxieties and fears. I still have days I loathe myself, but I also have days I feel lucky. I am thankful for everything I have gone through, because it has made me extremely empathetic to others’ struggles. I do not hide my scars. They are what made me who I am today. They remind me of the battles I have won, and they remind me to keep fighting.
This is the story of Lacy Hayes
Lacy currently lives in Virginia with her husband and their rescue dogs. Lacy was born with a rare genetic disorder called Stickler Syndrome which meant she was in and out of hospitals for the majority of her childhood. Lacy suffered from PTSD due to her illness and eventually turned to self-mutilation to deal with her symptoms of anxiety and depression. Lacy has since overcome her need for self-mutilation, and finds happiness in her song-writing, poetry, storytelling, and the love of rescuing animals.
This story first touched our hearts on June 3, 2019.
| Writer: Stacy Clair | Editor: Kristen Petronio |