A Personal Odyssey
— Raina Emma Angelina Hubbard
Odysseus had many challenges on his quest to return home to Ithaca. As someone with athetoid cerebral palsy, I also have challenges on my life quest to overcome! The challenges include not being able to communicate (in particular, communicating my physical limitations to others) and learning appropriate responses and behavior. In addition, I have been faced with not being able to walk, dance, eat, open a book, or move my hands the same as other people.
Meet my Polyphemus. She was impatience. The spring sunlight was coming into Langley Middle School, Room 208. The impatient lady with her red curls looked at me crossly. I was filled with fury towards her. I wanted to yell at her because she didn’t understand what I couldn’t do without help. I tried to be civil to her, but she did not understand my signs. I was signing, “I can’t do this! I need help! Please help me!” My Polyphemus then said, “Too bad. You need to learn how to go to the bathroom all by yourself. I can’t help you!” I knew I couldn’t stay all by myself there. I was hurt inside my heart. Looking as red as an apple with embarrassment, I could have fled. Instead, I just stayed as still as a soldier, staring directly at the lady as my eyes filled with salty tears. My temperature quickly rising, I felt as if I must yell angrily at her! I cried all day.
In high school last year, my first aide asked me if I can write all by myself. I answered, ”Yes, I could write.” So she said my responsibility was to write everything. I got exhausted after writing just a few sentences. My aide did not understand that I needed help. I told her again and again that I was exhausted! Still, she forced me to write everything all by myself. Angry, frustrated, and disappointed, I yelled at her and started to cry. My body felt fragile, ready to sleep instantly. My head felt as if it had been hit by a bomb and exploded. It ached severely. From my experiences and frustrations communicating with people, I learned patience and love towards others. From the challenge of people refusing to help me, I learned the value of independence and kindness toward others.
Laughing at unhappy scenarios or at inappropriate times is sometimes a problem for me. Like Circe warning Odysseus about troubles he would face on his journey home to Ithaca, my older sister, Kira Anne, taught me what an inappropriate thing it was to laugh at unhappy events. When I was 13, attending Kira’s graduation, I laughed at a story someone was telling about some people in her family who died. This was not funny but I was laughing anyway. After Kira explained that it was not polite to laugh, my face looked like it had been hit by the wall. I felt perplexed and confused. Like Circe, Kira Anne was encouraging me on my journey, leading me through the waters of appropriate responses.
As Athena supported Odysseus to overthrow his enemies, my dearest electric wheelchair, Diana, supports my disability. She can “jump and run” so quickly I feel as though I am flying. Diana is my Mercedes-Benz, zooming me through the highway halls of Edmonds-Woodway High School. Vanessa, my sweet speaking computer, talks for me. She is my violin voice! CC, my darling cochlear implant, helps me hear music and people talking: she transforms my world of silence to sound. She is also the enthusiastic orchestra conductor of my favorite singing and music, beautiful and slow. Music touches my heart. It makes me want to move, dance, and twirl around!
Because Odysseus kept thinking about Penelope, she helped him to arrive home. Likewise, my demanding physical therapist, Lauri, has kept me mindful of my physical goals. Lauri has been supporting me for the last two years by teaching me how to walk, stand, and sit up properly.
When I was younger, my habit to go to bed was to drive my electric wheelchair (Diana) forward, get out, stand up, turn around, sit in my bed, and lie down.
After diligently working in therapy, one evening last year, without really thinking about what I was doing, I walked four steps to my bed. Yelling out in excitement, I showed Father and Mum how I did it. They were so amazed, excited, and thrilled! Feeling like crying, I smiled at myself for standing and walking independently. Penelope had high expectations for Odysseus to return home; similarly Lauri has amazing expectations for me.
As I learned to endure all my difficulties, my Polyphemus has become the friend who taught me the value of patience and caring. My Penelope has high expectations and encourages me to be courageous. Athena is all my technology: mobility and communication tools that solve my frustrations interfacing with other people. Circe is a ballerina leading me through the dance of appropriateness. All the Greek gods and goddesses helped Odysseus to return to Ithaca; similarly, Kira Anne, Lauri, my assistive technology, and my old aide from middle school all encouraged me to overcome difficulties in my life.
Raina Emma Angelina Hubbard is an 18-year-old student at Edmonds Woodway High School who loves reading, writing, listening to music, dancing, and moving. She is handicapped, has athetoid cerebral palsy, and is deaf. To walk and support her balance, she uses an electric wheelchair, a walker, and AFOs. Miss Raina Emma is so astute and amazing that people who see her writing and speaking with her augmentative communicating device are highly impressed! In spite of her cerebral palsy, Miss Raina Emma is a ballerina who always loves dancing to lovely slow music.