“Most people are afraid of suffering. But suffering is a kind of mud to help the lotus flower of happiness grow. There can be no lotus flower without the mud.” - Thich Nhat Hanh
The image of the unfolding lotus flower called to me during my search for healing and understanding. I had become very ill with a blood disease and I started looking towards books, images, and meditation for any emotional help they could offer. Suddenly the lotus was everywhere in my new sick world. I learned that in some religions and cultures the flower symbolized a variety of notions such as purity, awakening, or rebirth. When I read the sentiment, ‘Out of the mud grows the lotus’, I quickly latched onto that one. I made artwork inspired by the lotus and meditated to the image. My mind’s eye could see that beautiful flower reaching and opening for the sun, for the light. I desperately wanted to be the lotus flower and get well. I certainly felt like I was deep in the mud. Long-term illness can feel dark, isolating, disorientating, and suffocating.
The year before I was diagnosed, my oldest daughter Josie began kindergarten. I should have known she wouldn’t like it. Every time I tried to sing the ABC’s with her she covered her ears and screamed for me to stop. When she counted, she refused to say the number thirteen even though she knew full well it existed. As the school year approached she announced to anyone who would listen that she was not attending kindergarten in September. Josie is very intelligent, creative, curious and feisty, so my husband and I dismissed her cries and believed she would rise to the challenge. We thought she just needed a bit of a shove.
Well, we were very wrong. The school year began and our family blindly stumbled along trying to manage our busy work, childcare and school schedules. At first it seemed okay, even though her eyes were always wide and unsettled when I left her in the classroom in the morning. We hoped it was part of adjustment. She was a head shorter than the majority of the other kids and most likely one of the youngest due to when her birthday falls. But she spelled the word ‘abracadabra’ correctly by the end of the first week. The experienced teacher reported she was doing fine.
Josie did not seem to agree with the teacher’s assessment though. When I picked her up at the end of the day she typically had an epic meltdown right outside the school building, while other kids calmly walked with their parents towards home or ran to the playground. She would wing off her shoes, get splinters from the bark chips, and then howl inconsolably. Or she would walk around like a wide-eyed zombie while her classmates played on the monkey bars that she was too short to reach. One day Josie got stuck in the slats of the playground ladder. She was capable of getting out but would not trust me to help and she was too emotionally distressed to do it for herself. She just screamed “I’m stuck!”
Getting Josie to school in the morning was stomach-wrenching and nerve popping. She would struggle daily to put socks with seams on, a problem she didn’t have before. She would hiss and growl at us for asking her to dress or brush teeth. She began a maddening habit of sucking on her hands and feet. My husband or I would need to lie with her at night for two hours or more, waiting for her to settle down to sleep. And then she wouldn’t eat lunch. She came home with a full lunch bag, and would leave her drink untouched. Josie’s health began to fail. She had digestive issues, acne on her face, and strange red sores on the corners of her eyes.
It seems so obvious now, but denial is a powerful thing. It wasn’t until she told me that kindergarten took away her imagination and that I didn’t understand her spirit that I was jolted awake. I cracked open when she told me those things and I could finally see the truth. She was completely overwhelmed by school. My husband and I admitted that this kindergarten thing was not working out.
We yanked her out of there six weeks into the school year without any professional consultation. We were running on gut feelings. The teacher and school counselor thought my husband and I were deranged when we told them of our decision. I resigned from my stressful job and stayed home with Josie and her younger sister. In the first few weeks of losing the certainty of school and work we sort of shuffled around in shock. When friendly strangers asked Josie if she was in school my daughter would tell them with a bit of pride and an upward lift of her chin that she “quit kindergarten.” No one, including myself, knew what to say to that.
As the weather got colder we hunkered down to lick our wounds. I felt an inner collapse as our lives slowed down. My girls and I spent hours that fall and winter drawing, reading and sewing by the fireplace. I tried to feed Josie constantly to plump her up. We traveled some and listened to audio storybooks all the time. I read a life-changing book about highly sensitive people who feel things deeply but can be overwhelmed easily. Something clicked loudly inside me, as I clearly understood my daughter, and myself, under this lens. I, too, was benefitting from all the quiet, intimate time our family suddenly had.
By spring Josie participated in swim and gymnastics classes. She got physically strong and began to feel the pull of gaining skills and reaching accomplishments. My husband and I persevered finding that sweet spot where she was slightly challenged, but not over-stimulated. We did very little socializing but she and her sister connected in a beautiful way. She would often create what we called “Josie’s worlds” where she would reconfigure unrelated household objects and toys into something that made complete sense to her. They were wonderful and complex. We didn’t return to her pre-school and we never sang the ABC’s. Even though we avoided anything that appeared to be traditional “schooling” it seemed to me she was learning everything a five year-old should know.
Then by summer I was diagnosed with a life-threatening illness. I was most likely sick even when I resigned from work seven months prior. I was in the hospital a few times while being diagnosed and getting treatment. Even when I returned home I could barely stand or stay awake, much less parent my girls. They were both distressed, but surprisingly resilient considering the circumstances. Family gathered around, we found a great nanny and we figured out how to function in a disabled sort of way. But it was agonizing to think Josie would try school once more while I was in such a weakened state.
My husband and I met with the principal a few weeks before school began. I felt sheepish and silly sitting there explaining ourselves with my mask on to protect me against germs. We had not even included the principal in our decision to quit school the previous year. But the principal said that he used to be a kindergarten teacher. He agreed that some kids just need more time. Josie had always wisely told me “Mama, you don’t rush a child.”
School began. I braced myself for round two of the kindergarten experience with the little energy I had. My husband and I quaked in fear and were vigilant for signs of deterioration. Within a few days it was obvious. Our girl was simply ready. Josie made friends, learned to read quickly, rarely complained about the seams in her socks and was a master on the monkey bars. It literally felt like a miracle.
Even though my health continued to deteriorate during her kindergarten year, she embraced learning and school anyway. To this day, she still doesn’t eat much of her lunch, but she can now identify that the busy, loud lunch room is just “too activating.” She continues to charmingly hiss and growl when being rushed, but it doesn’t happen nearly as much. Josie didn’t need a change of schools, to be home-schooled, have accommodations or be in a special classroom. What she needed was to develop at her own pace, connect to a secure base and have more time to play. She needed her particular sensitivities to be honored. I was able to give her those essentials, despite my illness. That girl was not stuck in the mud anymore.
A few months into her school year, I had this vivid dream. I was sitting by the raised garden beds that are near the kindergarten classes at Josie’s school. I did not see her, but I knew that my little girl was buried under that dirt. I frantically groped inside for her and at first I could not find her. Finally our arms entangled and I could feel her muscles strain as she emerged out of the dark. We worked together to heave her over the garden bed frame, and she collapsed into my arms. We then clutched onto one another in tears for a long time. Finally I looked at her and said, “Josie, YOU are the lotus”. And she knew that she was. I must have woken up after that.
I had spent so much time obsessed with the lotus because I thought I would triumph over illness and that I would be the blooming lotus that climbed out of the blinding mud. Instead, my wise, sensitive, strong daughter is the lotus I had been falling in love with. As a mother, that is even better. Besides, I suspect she is showing me the way toward the sun anyway.
* My daughter’s name was changed in this story out of respect for her privacy.
The Creative Process:
The act of creating can be a catalyst for healing. This collection of art and writing was created over the last two years while I was dealing with a life-threatening blood disease and parenting the best I could under the circumstances. I want to survive this illness for many reasons, but one of the most compelling is in order to continue to parent my two bright and shiny girls.
In my art I look towards symbols such as lotus flowers, full moons, trees, roots, winged creatures and my very own stem cells as inspiration and fortification. The act of creating helps me make sense of things that don’t seem to make sense. It gives me solace. It turns lightbulbs on. It reminds me of my intentions. Whether it be watercolor, mixed media, or words on a page or screen, it all helps me heal. Being a mom to young children does not allow much time for art, and being ill does not allow much energy for art, but it is exactly what I need to get grounded, recharged and fulfilled during challenging and chaotic times.
I typically don’t title my visual pieces, so I asked my girls for help. The titles of all the artwork are from the minds of my four and half year-old and freshly turned eight year-old. I think they got them right.
About the Artist:
Sally is an artist, an art therapist and a beginning writer. After more than two years with Severe Aplastic Anemia she is finally on her way towards recovery and plans to start private practice in Fall 2016. She will provide art therapy/meditation groups and also individual therapy for adults who are experiencing life-changing health challenges. She lives in Portland, Oregon with her husband and two daughters. If you would like to contact Sally please email her at: firstname.lastname@example.org