My third-grade teacher announced our math quiz scores. “Thomas ~ 10, Julia ~ 9, Albert ~ 10, Marilyn ~ 0. “Why can’t you do simple percentages like Barbara! She gets all A’s,” Mom said. My older sister was popular, never had to study, great at tennis, softball, and cheerleading. The only student who received consistent zeros, I was an easy target for bullies. Some were teachers. My teachers did not seem to care or have the resources to help me with math, writing, or reading. In that era, dyscalculia and dyslexia were rarely known terms. Educators did not appear to understand the learning difficulties I had. Barbara, 12–years old at the time, pointed out the reversed ‘D’ I wrote during a homework assignment. Ashamed and humiliated, I wished to be Peter Pan who lived in Never Land and had wonderful adventures. Teachers discussed my grades with Mom and Dad. Marilyn is listless and daydreams in class, they said. I felt like Cinderella who endured abuse and was treated unfairly. Drawn to Grimm’s Fairy Tales, I empathized with “Little Match Girl,” casted aside, cold, hungry, starving for love and acceptance. Dad bullied me about my difficulties counting coins, paper currency, and figuring out how much change we would receive when shopping and buying gas. Attacked by two dogs, I had a breakdown before my senior year in high school. I stayed in my room all summer convinced I was dying from rabies. My days were filled with panic attacks, fearing the sight of water, and contracting lockjaw. A tiny red change purse with a yellow smiley face sat in the top dresser drawer with my tee–shirts. Like a monster, it hurled vicious words at me. Haunted by night terrors, I woke up clammy, my heart threatening to implode. Dad rarely spoke to me. Without warning, he barged into my room, pinched my shoulders with his huge construction worker hands, shook me, and said, “Get over this nonsense!” That did not work. Despite placing in the poor readers group, books became one of my coping skills. I dreamed of being a pirate on Captain Hook’s ship, The Jolly Roger, and journeys on the Mississippi River with Huckleberry Finn. From ages 6–14 my parents sent me away to sleepaway camp in the Catskill Mountains. Last to be chosen for softball, soccer, and tennis teams, I was sad and lonely. After a classmate died from leukemia, I was sure to die next. Obsessed with catching germs, I tucked a hand under my tee–shirt, grabbed doorknobs, and turned them. I did not use public bathrooms. I washed my hands until they bled. Mumbling my obsessive-compulsive disorder (OCD) and anxiety symptoms to the family doctor, he prescribed Valium. He laughed and warned Mom and Dad about teen–age hormones. He never mentioned Agoraphobia. My sister Barb predicted I would never leave home, destined to live a life of failure and despair. She provided the motivation I needed to plan my escape from home. “You’ll never pass your driving test or make the grades to go to college,” Mom reminded me, over, and over…. You’re living in a fantasy world.” Mom’s dreams of becoming an oil painter and living an independent life died when she married Dad. The valium worked. At summer’s end, I studied and struggled to pass my New York State Regent exams required for college. I overcompensated for my dyslexia by ruminating over each word on the test while stressing out on the time limit for each exam. Barely passing math, I scored better in Spanish, History, and Science. I went to driving school and passed my test the first time, proving Mom’s prophesy wrong. After graduating from high school, I commuted to a state university by car for one year. Higher education institutions did not provide learning disability services at this time. Still, would I have sought out help and suffer through the stigma attached to my needs? I maintained a C average, transferred to a private college, and moved into the dorms. Struggling to function on my own, I created coping skills. When my test scores were low, I asked professors for extra credit term paper assignments. Besides books, writing, and learning became my passions. Still, I had mini breakdowns during those years. Pressured to succeed and show Mom was wrong, I was obsessed with getting all A’s. I majored in education to support other students and parents navigating the learning disability maze of services and lack thereof. Graduating Cum Laude with a Batchelor of Science in special and elementary education, I earned a Master of Science degree in education, as well. After Mom’s death my fear of dogs escalated to dangerous proportions. I darted between parked cars and stepped into moving traffic to avoid loose and leashed animals. I ran away too, not a great reaction since dogs enjoy the chase. My boyfriend Ed grabbed me and pulled me to onto the sidewalks. Filling the hollowness I felt from Mom’s death, I overate cookies, cakes, and candy, gaining 60 pounds. The stress of my first job in the education field, coupled with difficult co–workers, I had another breakdown. Driving became a trigger. I stopped using my car. I did not leave the house except when Ed took me to the therapist and doctor appointments. Diagnosed OCD (obsessive compulsive), anxiety disorders, dyslexia, and dyscalculia as an adult, the psychiatrist prescribed anti–depressants and medications for anxiety. Desperate for relief from the mental torture, there were many days when hospitalization seemed to be my only option. My dad spent three months in a hospital for depression. I was determined to not be him. Pushing through the darkness, I received treatment at home for agoraphobia anxiety, and OCD. For eight months, under a therapist’s care, I walked down the stairs of our apartment, touched the doorknob, and climbed back up to safety. Taking small steps in my recovery, finally I opened the door and stepped outside. Another four months I walked one block. Then two and three blocks. Ed was worn out from caring for me. I realized he needed a break. Terrified of being left alone, I took the risk and agreed he could go on a sixteen–day tour of Ireland and Wales. I was jealous and determined to live a full life. Yet, dog fears threatened to stop me. I had Exposure Therapy with a trained psychologist. After six months of taking small steps toward the docile Labrador Retriever, then backing away, finally I pet the dog’s coat. My first experience with the dog was a success. Then, we stopped therapy. I should have had more sessions, but the therapist was afraid to retraumatize me. Vacations and moods stir up this trigger. If I am feeling confident and less stressed, small dogs look cute and non-threatening. Still, large dogs terrify me. Despite this trigger we have traveled on 25 cruises to the Caribbean, Mexico, Canada, England, Cuba, and France. COVID was excruciating. I still mask in the airport and go through lots of hand sanitizers on the plane, wipe the phones, TV remotes, and doorknobs in hotels. Last summer we went to Marina del Rey, California. We arrived on a Sunday. After checking into our hotel, lunch was next. Holding my cell phone, I searched the streets for dogs, while walking across the street to the restaurant. Taking pictures of these animals proved I did not get bitten when they came near me. Large and small dogs were everywhere. Yes, I knew that California was one of many dog–friendly states in the US. Dogs sat at the dinner tables beside their humans, ran off–leash throughout the shops, swam in the hotel pool and bay, and sunbathed. Deep breathing, exhaling, and looking at the sparkly water, boats, and perfect summer sky, I managed to distract myself from the triggers. After lunch we went back to our hotel. Exhausted, I watched the sunrays ripple against the water before taking a nap. Resting is another coping skill. On Monday, we took a short walk to a coffee shop. The streets were empty except for people going to work. I distracted myself from the dog fear with taking pictures of flowers, trees, the bay, and the architecture of various buildings. Instead of running, from the triggers, I stopped and observed them. Today, I am stable and living a full life. I am a successful small business owner for 34 years, published writer and author. Teaching creative–writing to adults and teens, I provide encouragement, support, and resources to students needing assistance with written language skills. Following through on a weight–loss program, I lost 60 pounds after one year. My weight fluctuates between a 3-pound gain and loss, which is normal for maintenance. I must use a calculator to add and subtract. My reading and writing have improved. In October 2023 I earned my Peer Support Specialist certification. I am a peer group facilitator for DBSA (Depression, Bipolar, Support Alliance California). Peer Support Specialists are not therapists, doctors, or nurses, and do not prescribe medications. We offer support and resources through our lived experiences. I am not “The Little Match Girl,” starving for love and acceptance. Peter Pan and Captain Hook inspired me to dream. I married Ed. We celebrated 38 years of marriage in 2023. Every day I practice self–care by eating healthy food, exercising, listening to guided meditation, and using my coping skills in stressful situations. Courage, perseverance, therapy, peer groups, physician prescribed medications, and facilitating has spurred me on to achieve a happy life despite my fears, phobias, OCD, and learning disabilities. About the author:
Marilyn June Janson's dyslexia, dyscalculia, OCD, and anxiety disorders were diagnosed when she became an adult. Still, with courage, determination, and reliance, she earned a Master of Science degree in special and elementary education. Ms. Janson teaches creative writing, won three awards for nonfiction, and is a published author. She lives in Phoenix, Arizona with her husband Ed and Bella Rose, a cat.
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She is the one people see. The one they think they know. But it is only the bones of her. Without me, she is incomplete. I am the night to her day, the weakness to her strength. The wax to her bone. In May 2020, I had a short story published by Reflex Press called “Wax Sister, Bone Sister”. It is based on the Zimbabwean folktale “Sister of Bones” (which I first read in Alexander McCall Smith’s 2004 collection The Girl Who Married a Lion) with motifs from three more Sub-Saharan folktales: “Children of Wax” (Zimbabwe, Ibid.) , “The Wife Who Could Not Work” (Zimbabwe, Ibud.) and “Of the Fat Woman Who Melted Away” (Nigeria, African Myths Ed. Jake Jackson, 2019). “Sister of Bones” tells of a weak sister and a strong sister. When the strong sister dies, the weak sister must take on the departed sister’s chores. The work becomes too much for her. She sings to the river in which her sister drowned, and the crocodiles take pity and put the dead sister’s bones back together. This Bone Sister helps the weak sister carry water, but must remain by the river. So, there are two sisters at the end of the tale: the strong one at the river and the weak one in the village. I developed fibromyalgia in 2016, following a chest infection. At first, when it was undiagnosed, the pain was so bad and the drugs so strong that I was bed-bound. Later, I became able to resume a more “normal” life. But as anyone with the same or a similar condition will know, levels of pain and fatigue can fluctuate wildly from day to day. Sometimes I can go for a five-mile walk or redecorate my hall. Sometimes I can’t even get a bra on. Hence, the motif of the weak and the strong sister. Usually when people look at someone with fibromyalgia or similar conditions, they see only one version of us. We either get overpowering pity that we don’t need, or the cringe-inducing comments, “You don’t look ill,” “You’re looking well” (usually when you haven’t slept properly for three nights), or “Yes, I’ve been quite tired, too.” Most of our friends only see us on our good days, because that’s when we’re able to get out. They don’t see us on those mornings when we’re silently willing the cat to walk over us, just to stimulate any kind of movement in our muscles. They don’t see how, in order to be productive, we must be efficient in the short space of time we have before we collapse on the bed again. What I like about “Sister of Bones” (and its cousin stories listed above) is that it does see us. Both the weak sister and the strong. I come from a line of strong women. I was never one of them, even before I developed fibromyalgia. “The Wife Who Could Not Work” and “Of the Fat Woman Who Melted Away” both depict a woman who is ostracised by the other women in her community because she must sit in the shade all day and not work. They call her lazy. They shame her into working, with disastrous results. I’m not saying my family treats me like that. (Far from it). But those of us with chronic illness or disability can feel that kind of pressure, either from society or from our own thoughts. We can feel guilty about the little we are able to do on our “bad days”. Perhaps we had to give up a job and we now feel guilty about not contributing to the household budget. Perhaps we encounter shaming from others for being on benefits, especially when our disability is not visible to the general public. These two stories recognise that there are perfectly legitimate reasons why some people cannot work. The village learns a lesson. It’s a lesson we all need to learn. The Fat Woman Who Melted is made of oil. The Children of Wax similarly melt if they go into the sun, and must hide away. I find this wax motif very powerful, especially where my fibromyalgia intersects with my depression/anxiety and my asexuality. (I retold “Children of Wax” in my 2020 collection Asexual Myths & Tales). It helps me articulate something about “invisible” disabilities and an “invisible” orientation. That’s why I made it part of “Wax Sister, Bone Sister”. I am the sister no one sees. The silent sister, the indoor sister, who oozes down the stairwell, who quivers in pools on the kitchen floor. The one who – come morning – must be scraped from the slats of the bed. Flaking. Falling. It is inevitable in all these stories that the sisters, wives and children must come out of the shadow and into the sunlight. People must see them melt. It is the same with us. People need to see our “invisible” health conditions, with all their contradictions. The Wax Sister and the Bone Sister. *** Read "Wax Sister, Bone Sister" by Elizabeth Hopkinson. About the author:
Elizabeth Hopkinson is the author of the Asexual Fairy Tales series. She was featured in the BBC’s We Are Bradford project, and was on Stonewall's first ace/aro panel. Her short stories have appeared in The Forgotten & the Fantastical and Dancing with Mr Darcy, along with many other anthologies and magazines. Her story “A Short History of the Dream Library” won the James White Award. Elizabeth has appeared at Leeds LGBT+ Literature Festival, Ilkley Literature Festival Fringe and Swanwick Writers’ Summer School. She lives in Bradford with her husband, daughter and cat. Elizabeth is a romantic asexual and is committed to asexual representation in fiction. She is currently crowdfunding More Asexual Fairy Tales. http://www.elizabethhopkinson.uk |
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