Ceremony

– Tayo’s Troubles Essay, Research Paper

Part 1

In 1983, I was almost two years old. My mom and dad had just bought a brand new house, and my younger brother Matthew was about to be born. Little did I know that these next few months would redefine the fundamental constructs of our family life. One morning, my mom awoke to find that she was suffering from what she thought were just normal symptoms of being seven months pregnant. She had numbness in her legs, and her vision was blurred. The symptoms she was experiencing turned out to be much worse than typical pregnancy symptoms. Looking for some relief, she went to the doctor s office. After months of tests and debates, she was diagnosed with Multiple Sclerosis, a chronic illness that slowly deteriorates the myelin sheathing surrounding the nerves. The myelin sheath s job is to protect the transmission of neural impulses from the brain to various parts of the body. Without transmission integrity, it would be difficult for the brain to communicate effectively, making simple body movement and control quite challenging. The course that this peculiar disease assumes is not the same for all. Many can live a relatively healthy life managing well within the confines of the disease, while for others it robs them of all quality of life. For Mom, it was the latter and for me, a quite different childhood than what many might consider normal. As you might imagine, the resulting childhood experiences taught me some of life s most valuable lessons and served as the foundation from which I developed my own personal values.

The disease s progression was swift. When I was five years old, mom started out trying steroid treatments to help her get through the rougher exacerbations. When things took a turn for the worse, she looked to experimental chemotherapy treatments in hopes of getting the upper hand on the disease. The drug induction and resultant rehabilitation had her in the hospital for three months. She was personally battling the disease head on; her will and determination left an indelible impression on the spirit of our family. I was only able to see her on weekends, as it was such a long drive to the rehab center where she was being treated. My brother and I would spend the scarce time we had with her as if nothing was wrong, truly believing all was going to be made right. We were in a state of denial. I can remember driving matchbox cars along her baldhead. We remained mischievous and juvenile. As the years passed and I grew older, I found myself becoming less the child and more the caregiver. I was blindly taking on responsibility with the same will and determination that she displayed in her fight with the disease. Now, I could see how her condition was providing the foundation on which I was maturing.

Upon her release from the rehabilitation hospital, everything was fine for a few years. She re-acquired a driver s license and submerged herself in family life. We all thought she was in the clear. However, problems began to resurface. My brother and I would come home from school only to find that she could not make it out of bed and had fallen, hopelessly, on the floor. Every day, we would arrive wondering what condition we would find her in. Eventually, we had to buy special equipment that would notify her friends if she needed help. Dinnertime became a chore, as she could no longer handle silverware as a result of the tremors. During these times, I witnessed my mom s undying determination and will to overcome this wretched disease. Some days she would not have the energy for more than two trips up and down the stairs, but somehow she managed to accomplish her tasks. Her courage was impressive because it came after a false hope when we thought her problems were over. She demonstrated the will to do it all over again. Mom would never give up.

Despite Mom s inability to physically care for herself and her children, she found ways to manage the on-goings of the house. Through her actions, I learned some of my first lessons in leadership. She had a monitoring system put in the house to allow communications between different rooms. Little did my brother and I know that this was a way for her to monitor her growing boys. She also had remote controls for the front door and some appliances. She used these and other devices from what we called her Command and Control Center in the living room. This demonstration of independence in the face of her physical trials unconsciously became part of me as I mimicked the behaviors I was witnessing. From her disability, she developed a sixth sense for what was going on well beyond the extent of her other senses. Only in retrospect do I realize she was actually doing more parenting than I had ever thought.

For the next six to seven years, she was in and out of the hospital. Her doctors were giving her the latest and greatest drugs but they were not proving successful. Nothing seemed to work. When the doctors and clinical science could do no more, she looked to other sources. She turned to homeopathy and found possibilities in bee venom in 1993. For over eight months, my dad would sting her in various places around the body in hopes the venom would positively stimulate the nerves, twenty times every other day. For a short period she thought she was benefiting, but the pain from the repeated stings soon began to outweigh the small benefit. I must not have been more than twelve years old, but I clearly remember learning about taking risks. It instilled in me a level of confidence to take my own risks and a willingness to stretch and go beyond the confines of my comfort zone.

By the time I was twelve years old, mom s MS was becoming about as predictable as the weather. Some days would simply be easier for her than others. To accommodate for her increasingly limited capabilities, we installed additional aids and equipment throughout the house in an attempt to maintain her level of activity. It was a losing battle. She was no longer able to care for herself, and became fully dependant on my dad, brother, and me to do the things everyone else takes for granted. We had to do everything including emptying her catheter, feeding her, bathing her, and positioning her to avoid bedsores. As more and more responsibility came my way in caring for her and keeping our household running, I developed a great appreciation for the simple things. Washing clothes, talking about school, ironing, cooking, and being there to support one another were so important to growing up.

Since 1994, Mom has been completely bedridden and unable to communicate. She can sometimes move her head or eyes in an attempt to respond but even that has become a daily challenge. She is not able to feed herself, and she can t swallow food or drink. Her quality of life could not be much worse. She has a special nurse, three doctors, and a physical therapist. Someone must be with her at all times. Throughout her trials, from the lost ability to hold a fork to her endless visits at the hospital, she remains a living testimony to what the late, Jimmy Valvano once said, Don t give up, don t ever give up. For as long as my mom lives, she will never lose hope. This is Mom s most important legacy to our family.

Eighteen years ago, I would never have imagined my mom s battle with this disease would come this far. It has definitely put our whole family s lives on another track. I will never know what some other track would have brought, but it does not matter. In some respects, living side by side with this disease has proven to be quite a positive influence on my development into a young adult. I have learned many valuable life lessons. With Multiple Sclerosis as the backdrop to seventeen of my eighteen years, my mother has parentally sewn into my being a value system that is rooted in perseverance, prudent risk taking, tolerance, respect, and leadership.

These lessons have served me well to date. In caring for Mom, I realized how important it is to be genuinely considerate of everyone. This trait has helped me feel better about myself and has helped me build strong relationships with peers. I met a mentally retarded teenager while in high school, who had very few friends. I did not judge him by what I saw on the outside, but probed deeper to find out who he really was. We became friends, and to this day, he will never forget the times we spent together, and I will never forget the sense of accomplishment and pride I received from being able to positively influence his life, just as my mother had done for me.

From my mother and her valiant battle against Multiple Sclerosis, I have learned to face adversity and challenges head on with courage, optimism, and determination. There is nothing that I cannot accomplish. She has shown me how to live. Her passion for life leads me to savor each passing moment, never forgetting that life is a precious gift. Of course, I would trade everything I have learned for her to be well, but I ll take the downside with the good and be better for it.

PART 2

In Ceremony, the main character Tayo must come to terms with himself and his surrounding environment upon his return from World War II. Tayo was someone who had a great sense of human nature and maturity. These traits helped him to overcome the hard times he encountered. The affect of my mom s illness on my maturation into a young adult is very similar. As it was for Tayo, my life has had many obstacles to overcome, sometimes even needing the help of others.

At the beginning of the story, Tayo is back from the war and is suffering from a posttraumatic stress disorder that has affected him physically and emotionally. To make his problems worse, he is half Caucasian and half Mexican, so he must deal with the problems associated with mixed culture. He is torn between the Native Americans and the white world, and he is unable to find security and comfort. Like Tayo, I also faced many tough times in my life. Growing up watching my mom s disease slowly deteriorate her was very disturbing. Aside from her illness I, in essence, grew up without a fully functioning mother. She was not there to help me when I was having hard times due to the limitations her disease put on her. Compounding my problems further, my dad worked four hundred miles away from home when I was in high school. Though, through all the times Tayo and I went through, we had someone by our side or something to learn from our experiences.

Tayo always had people standing by his side. When he was sick, the medicine man, Betonie, cures the sickness that white-man medicine could not cure. More importantly, Betonie helped Tayo to realize that the war between the races had been an on-going ritual for generations and that he was only one actor among many. Tayo was then able to understand the interdependence of everything in the world, and that everyone is a player in the drama of life, but the things we do affect others. We learn from experiences and the people around us. Most of what I learned about life while I was living at home, I learned from the events and the people associated with my mom. In seeing her go through the pain and agony that she endured every day, I developed a respect for everything that I used to take for granted. The people involved in the every day care for her helped me to realize the good I was doing in caring for her and the long-term effects it would have on my life. I learned from the responsibility that my dad took on as a caregiver, that sometimes we must drop everything to help someone in need.

Tayo was a risk taker. When he looked to Betonie for help, he was taking a huge risk because Betonie used old Indian ceremonies in his practice. Tayo knew that this would cause him to become an outcast. I clearly remember learning about taking risks (Dudek, 4). Being by my mom s side, through all of her tough times helped me to realize that taking risks was a part of life. It also, at times, caused me to be an outcast. For instance, when I was hanging out with Ryan, the mentally retarded teenager, some of my friends would question why I was going out with Ryan instead of them. This was one of the risks I took that ended up teaching me a life-long lesson in caring.

Ever since Tayo was born, he was looked down upon because he was biracial. His aunt made a point of making him realize that he was an outcast in their society.

She was careful that Rocky did not share these things with Tayo, that they kept a distance between themselves and him. But she would not let Tayo go outside or play in another room alone. She wanted him close enough to feel excluded, to be aware of the distance between them. (67)

This was evident even within his house. Rocky was afforded more opportunities than Tayo. For instance, when his aunt was sewing, she gave a piece of fabric and some thread to Rocky to play with while Tayo had to sit and watch. Tayo s condition was similar to mine. Throughout my teenage years, I was considered by some as an outcast because of all of the extra responsibilities I had. On Friday nights when all of my friends went out, I would often have to decline and stay home with my mom. When we had parent s night at school, my mom would come in her wheelchair with me pushing her along. These subtle differences between my peer s lives and mine often times left me to a disadvantage in the social realm of school.

During my journey through the teenage years, I was coming to terms with myself and the identity I established within my community. By living side by side with Multiple Sclerosis, I developed into a mature young adult much sooner than the ordinary teenager, just as Tayo did. Tayo and I created a value system that is rooted in perseverance, prudent risk taking, tolerance, respect, and leadership (Dudek, 6). The hardships we endured truly embedded into us a great sense of human nature and maturity.