At any moment in life, anything can happen to permanently affect your life. Have you ever taken anything for granted? I used to until I became disabled. The night after thanksgiving 2008, I became disabled from a rare neurological disorder called Transverse Myelitis. This disorder is caused by inflammation across both sides of one level, or segment of the spinal cord. Researchers are uncertain of the exact causes of transverse myelitis. This rare disorder can happen at any age. The peak ages that this disorder affects are between the ages of 10-19 years and 30-39 years of age. In the United States there are around 1400 new cases each year. Never take life for granted; you do not know what life will bring you tomorrow.
I am a forty-one year old wife and mother of a fifteen-year-old son who plays football and a six year old over active daughter. I was born in Oregon, but raised in Washington and California. Growing up, I was a very active child. As an adult I worked a lot with my father, as we started a low voltage telecommunication company together. At the age of 36, my life changed.
The day after spending thanksgiving with my family, I woke up feeling great. In fact, I was one of those crazy people up before daylight shopping the “Black Friday” sales. Later that evening, since my older brother Je’an’s family was still in town visiting, everyone decided to drive to Roseville to John’s Incredible Pizza. I remember that my neck felt like I had a kink in it. After getting home that evening I went to sleep, hoping that the kink would go away.
In the middle of the night the right side on my face became numb. Within an hour, I started feeling uncomfortable. I decided to take a hot shower to see if that would help at all. On the way to the shower I had difficulty walking. The right side of my body was a little weak. After the shower I went back to sleep. Within two hours I was awake again, but this time I had to wake my husband up. Within a half hour, my mother and older brother were at my house. I was losing control of the right side of my body. My husband and brother helped me to the car. My brother took my children back to my parents’ house and my husband and my mother then drove me to Rideout, the local hospital.
I was taken into the emergency room. By this time I was in a lot of pain. The doctor thought that I had a stroke but they could not understand why I was talking normally. I was admitted into the hospital. They did a couple of MRI’s, a CT scan and x-rays. Rideout could not figure out what was causing the right side of my body to weaken. Monday morning the nurse drew a lot of blood from me. The doctor came in and told me that he was not sure what was wrong with me. They sent my blood out for testing and I was going to be sent home. I left the hospital walking with a walker. After getting home, I made an appointment to see my doctor in Sacramento.
On Wednesday, I went to my doctor’s and he also took some blood. He told me that if anything new happened he wanted my family to take me to UC Davis. Within a couple hours after my appointment I started to feel everything start to come on again. Once again I was on my way to the hospital, but this time it was UC Davis. This time the pain came on faster. I don’t remember much about the waiting room, except they took forever to get me into the back room. By that time, I could not move the right side of my body. I remember lying there with my husband looking at me with fear in his eyes. I could tell that he was holding back tears because he felt so helpless. I was sent to have another MRI and then admitted into the hospital. Unlike Rideout, UC Davis noticed the inflammation located on the right side of the C2 area of my spinal cord. The doctors told my family and me that I had a rare disorder called transverse myelitis. My new label was idiopathic transverse myelitis. Idiopathic means that the doctors do not know what caused the lesion. Transverse myelitis is so rare that UC Davis has only seen one patient each year with it.
The doctor put me on three days of corticosteroid medications to help reduce the inflammation. After the steroid treatments, the doctors tried to talk me into a new treatment called Plasma Exchange. Plasma exchange has been used for other health problems, but some doctors think that it helps patients with transverse myelitis. I chose not to do this treatment.
I was temporarily paralyzed on the right side of my body and the left side of my body I could not feel pain or temperature. I had two choices – stay in the hospital and get physical therapy six days a week or go home and go to outpatient therapy two days a week. This was a hard choice because I had two young children at home. My son Ivan was turning ten years old and my daughter Desirae was a year and a half. After reading more information about transverse myelitis it was easier to make the choice to stay in the hospital. From the cases that I read, people that had more physical therapy had better chances of recovery.
During the first week of being in the hospital, the therapist came to my room to work with me. This tiny little lady told me that she was going to be my therapist until a bed opened up for me on the rehabilitation wing. I didn’t believe she was going to be able to help me stand. To my surprise, she had me standing on my feet. She came my room a couple times a day to help me move my right leg and arm around to prepare me for the rehabilitation.
On Sunday I was moved to the rehabilitation wing. This time I was put in a room with a woman that had a brain tumor removed. She did not talk much and could not walk. I was in a hurry to get better because she would push the nurse’s button whenever she needed to go to the bathroom. Our room got stinky at times. Monday morning I was starting full time therapy, getting me one step closer to learning to walk again. I was learning to dress myself and was given a wheel chair. With the odors in my room caused by my roommate, I learned really fast how to get myself out of bed and into my wheel chair.
With my family in Marysville and me in Sacramento, it was hard on all of us. My husband would stop by on his way home from work to visit me. My parents brought my children in every day to see me. Physical therapy was going well. My family could see my progress every day. Within three weeks, I was able to walk with a left hand side walker. I spent a month in the hospital, learning to walk with my right leg again. An occupational therapist worked with my right arm and hand, helping me gain strength. There were times that I wanted to give up and go home. My son Ivan celebrated his tenth birthday at the hospital. On Christmas day, the hospital let me go home for eight hours. On New Year’s Eve I made the choice to go home. I could not be away from my family any longer.
I have been told that the normal prognosis for recovery is two years. I was also told that about one-third of people affected with transverse myelitis experience good or full recovery from their symptoms; but this has affected the right side of my body. I cannot feel with my right hand unless I see what I am trying to pick up. I had to learn to write with my left hand. Over the past four years I have learned to type at a good speed with just my left hand. I am grateful that I have recovered enough to walk and function through life without needing much help from others. I am a very strong-minded person who accomplishes everything that I start; I do not let my disability get in the way. I am very grateful that I have a loving family that is always there for me. I don’t know how I would have made it through this difficult time in my life without them.
Today I have returned to school with a goal to obtain my Associate’s Degree in Accounting. I want to be an example for my children; to teach them that a college degree pays off. I have achieved most of my goals in the last year and a half. In May of 2014, I will be graduating from Yuba College. No one knows what life will throw at him or her. You should never take anything for granted. Life is too short. What happened to me is rare but accidents can happen at any time. Enjoy life and live life to the fullest. Help people in need, because you never know if you’re going to be the one needing help.
~ Dessa Ibsen