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 mo