Water was deep in my ears and trickled down the sides of my face as I continued to scrub my hair in the small bathroom sink, when I heard him say “hey.” He brushed past me, his hand grazing my back. I couldn’t tell whether it was intentional or not, but his touch made a slight shiver go down my back.
We were in a bit of an awkward living situation—we lived in close quarters in the freshman residence hall with 33 others who we worked 58 hours a week with, lived with, and hung out with. I was washing my hair in the bathroom sink which was most times cleaner than our publicly shared showers. There was never a dull moment—nor were there very many private moments. His room was two floors below me and I had a crush on him. His appearance in the bathroom while I washed my hair wasn’t a flattering moment for me, but time alone was time alone.
He said something snarky that made me laugh while I rinsed my tight curls–which this time felt different for some reason. In an effort to look cute while taking my head out of the sink, I flipped my hair back to let my wet curls naturally fall into place. He’d already expressed to me that he loved my curls. He was watching me through the mirror. I shifted my gaze from him to me and ran my fingers through my hair before I flipped it from the left to the right. And, in that moment what I saw made my entire body tense up. I felt hot and cold at the same time. I had to work to center myself and remember to breathe. My cute hair flip had revealed a bald spot on my scalp the size of a clementine. The wind was knocked out of me, but I was trying to stay calm so Ryan wouldn’t notice. I had never seen a bald spot on my scalp—or anywhere else for the matter—and was completely unsure of where it came from or what to do about it.
I told Ryan I had forgotten something in my room—which I then fled to, locked the door, and opened my closet to stare into the mounted mirror. I tried to convince myself that the spot was bigger in my mind then it actually was, to not to worry, and breathe. I could deal with it later. I put my hair up and went back to the bathroom. He was still there.
My primary care doctor told me she wasn’t sure why my hair fell out. She told me that the cause could be lupus, or something of that nature and recommended me to see a dermatologist. Her ambiguity, yet definitive concern, alarmed me, further. I was already a nervous wreck. It wasn’t necessarily the loss of hair that terrified me—it was the fear of what that meant. When I thought about hair loss, and balding particularly I thought of incurable autoimmune diseases, of catastrophic diseases like cancer, etc. I was 20- years-old and not ready to face a health crisis like that.
In the waiting room of the dermatologist’s office, I distracted my nerves by texting Ryan and other friends. When my name was called I walked into a plain doctor’s office and started reading brochures for acne treatments. The first thing I noticed when my doctor walked in was his bright orange shirt, with a blue tie that had orange fish to match. He was young, awkward, and distant. There was no charm, no exuberance, no calming tones—he was formal, straight forward, and made horrific clothing choices. Quickly introducing himself and his credentials, he asked me what the problem was. I explained to him the mysterious bald spot, took down my hair as he rounded my chair for a better look. He touched around the spot, looked me in the eye and said, “You have alopecia–which is an autoimmune disease.” I bawled. I had no idea what alopecia was, what I heard the loudest was the word “disease.” The doctor explained that my immune system was attacking my hair follicles and my thyroids (which meant I had to visit an endocrinologist as well).
He told me 1% of American’s have the condition and that they weren’t sure of the causes. There is no definitive cure. The only thing he could offer was a series of five shots in the bald spot to stimulate growth. I would have to repeat this once a month for three months. He then proceeded to check the rest of my head for spots. I tentatively asked if I would lose all my hair and he said there was no way to know how bad it could or would get or whether or not I would lose more hair on the rest of my body (which at that point hadn’t even occurred to me). He said it was a good sign that I only had one spot for now.
He left and came back with the needles for the five shots, administered them and I left.
I drove home feeling numb. I still wasn’t sure what he said—all I knew was that I had an incurable disease I had never heard of and didn’t know why I got it or how far it could spread. The thoughts of being completely bald—without eyebrows, leg hair, hair on any part of me brought back to a fit of tears. I called my mom. I drove to my childhood home where she was, got in bed and didn’t move for several hours.
I had taken the weekend to come home to New Jersey to go to these doctors’ appointments. I did not tell Ryan about the bald sport. All he knew I was having some concerns and had to go to the doctor. Since we were in a budding relationship I didn’t want to worry him, or maybe more honestly, let him in that deep.
My appointment was at 10:00am and by 11:00am he had called me. I didn’t answer. He called again at 11:30. He followed that with a text saying he was worried. I texted him back, blurry eyed and puffy saying, “it was more serious than I expected, but I will be physically okay, thanks for the concern.” He immediately called me and this time I answered.
We had been on less than 3 dates. I felt as though we weren’t close enough yet for this to concern him. But he felt differently. As soon as I was done explaining he told me, “you will be okay, you are still as beautiful as the day I met you, and we will get through this together.”
In my stages of delirium, numbness, crying, and confusion, I remembered a guy I went to high school with, who drew attention for always wearing a hat so low down his forehead. People said he had some sort of disease. I remembered when he came to school without his eyebrows. So I thought—what if I had what Danny had? We hadn’t spoken in years, but I still had his number and decided to text him. In less than an hour we were on the phone. I told him everything and he told me that he had Alopecia too.
He shared experiences and discovered we had gone to the same doctor. I explained to him how awful I felt after the shots and how bad my head still hurt hours later. Danny recommended a homeopathic doctor who helped Danny regain facial hair, the hair on his head, and legs.
By the time I saw Dr. Peter J. Prociuk I had 3 new bald spots— in different places and sizes. I went to his office located in an old row home, decorated with pink hallways, carpeted floors (so you had to take your shoes off upon entrance), and a warm receptionist—who I later found out was his wife. I was led to the doctor’s office—which was at the end of a bright hallway and into a room not like any other Doctor’s office I had been too with silver medical supplies, florescent lights, white walls, and blue gowns. Dr. P’s office was also carpeted with a large floor to ceiling bookshelf, stocked with family photos and had two large windows that allowed natural sunlight in to calm me. I sat in a red plush seat and Ryan sat next to me on a blue couch. I removed the pillow behind me and held it in my lap. Dr. P came in, we exchanged our introductions, and he then sat across from me in a black chair, seated next to a large book—of more than 1,000 pages. He began by asking me questions about my habits, my thoughts—the questions got weirder and deeper as the time pasted. We spent a lot of time talking about my anxieties, fears, stress, and coping mechanisms. He asked Ryan a lot of questions as well, some in follow up to my responses, like “is that true?” or “how do you think she responds to this?” Though we had only been together a few months, Ryan’s answers were honest and showed, without hesitation, that he had dove into the darkest parts of me and wasn’t afraid of what he found.
At the end of our session Dr. P went to the closet located behind me, got a vial of pellets, and asked me to tilt my head back as he sprinkled 5-6 pellets into my mouth. The small white, pellets, melted in my mouth and soon, I felt an overwhelming sense of calmness.
The next few weeks were filled with a lot of tears, and a lot of hair falling. Ryan was right there with me, washing my hair, cleaning out the sink cluttered with hair, and reminding me always that it was okay. He took pictures of my progress and talked frequently with Dr. P. I gained a deeper understanding and a slower acceptance of why this happened to me.
My weeks—which turned into months—of healing were met with simple decisions. I had to decide whether or not I would let stress destroy me. I had come to a point where moments in my day were influenced by anger or sadness to depths that affected me so much my hair was falling out. These were triggered by horrible events in my past that I had to decide whether or not I would let it to continue to influence my present or simply let it go. This ended up being unfathomably hard. Did I want to survive this or did I want to be dragged by the stress?
My body was telling me that I couldn’t handle the stress I was putting on myself. It was telling me that I was killing myself.
I can’t say, with my treatments, that I am fully healed with no bald spots. But I can say that I have learned to listen to my body, my heart, my soul. I have learned how to listen. I have learned when to let myself feel and process emotions—which allows me to be freer and happier. I have learned that although life sometimes is unfair and we struggle to accept the events that inevitably shape who we are, also means it may first destroy us. I have learned to let it flow—to let my body feel in each moment wholeheartedly which has made me happier and less stressed.