Jooly's Joint: people with MS supporting each other

[Make Friends] [Be Inspired] [News] [Contact Jooly]

My Life

by Jeff Newman

Today, I saw something that I do not like to see: other people who have Multiple Sclerosis like I do, struggling with their disease. I once had trouble seeing, walking, and talking - just like them. No, I did not stare or laugh at them, because I used to be like them. I have a lot of respect for other people with this disease. I hope people with this disease do not think life is over, because it has instead, just started over for us. I also hope that after reading this, other people will be encouraged in their lives with MS. I want to start with my background before I got MS and then bring the story up to to date.

When I was eight years old, the first sport that I tried was soccer. This sport was fun, but it wasn't for me. I wanted to try basketball, which was a good sport for me. During YBA, I found out that I wasn't bad. That same year, my dad introduced me to baseball. My father had told me that I just had to try this sport. When I first played, I was good, thanks to my dad. He first taught me how to act toward everybody, and how to act like a big kid around adults, as well as the other kids. Then he started to teach me how to pitch. I remember standing in my old driveway. My father would 'take a knee' and be my catcher. I practiced all day, until I got it right in his eyes. Then one day, my father told me to close my eyes and pitch. So I did. I threw the ball with all my might and energy. Then I heard a big crash. I opened my eyes to find that I had thrown the ball through the rear window of my older brother's car. I started to cry, but my dad was laughing! He told me that my pitch was good and that I shouldn't worry about the windshield.

Sixth Grade: I had a great time playing flag football. One of my best memories was when I threw a 30-yard touchdown pass to my good friend. During that year, I also started basketball. I was able to help my school win League. I did well, and so did everybody else. My mom and dad were very proud of me.

Baseball came around again. I did very well during that year, except in All Stars. I had been picked to start the first game against Centralia, who had a very good team. The first guy that I faced hit a home run that went up as high as a light pole. We ended up losing that game. My father told me that I would do very well, as long as I kept practicing and working hard, especially at my schoolwork. My father was at every game, when he did not have to work. If he did have to work, he would always call home, and check on how the team and I had done. When he called, he always asked how my mother and brother were doing also. Then he would ask how school went, if I had homework, and whom I was dating. At the end of our talk, he would always say, "I love you." I bet you can understand me when I say that phone call was the biggest highlight of my night, because even though he could not be present at the game, he always made sure to ask, win or lose, how I was and how I did. I loved those moments very much.

Seventh Grade: My seventh grade year started off with football. I was chosen to be the center that year. I was good, but I did not care for football.

I did a real good job at basketball. At the end of the year, I attended a basketball camp at the University of Oregon State. I thought it was pretty awesome.

During baseball, I did very well at pitching. By the time I was done pitching a full game, my arm would hurt. I would tell my dad and coaches that my arm did not hurt and kept pitching over and over again for the rest of the year because I loved it so much. This was not a very smart thing to do because I ended up with a small tear in my right shoulder's rotator cuff.

High School, Freshman Year: To be honest, I was nervous, but I had a lot of older good friends. They showed me a lot of good things - and bad things. I started lifting weights and dating older girls. Then I started getting really cocky. I played football, even though, as you already know, I didn't care for this sport. I finished and did well, but decided that would be my last year.

Basketball was really good. The team and I did very well.

The High School got a new JV coach for baseball. He was tough, but fair. The coach and I got to be real good friends. I pitched eight games for the team. After the games, I had a 0.00 ERA. Then I was picked to pitch for the varsity. The first game I pitched was against the Tumwater T-Birds, who were number one at the time. I was nervous and scared. After I finished my warm up pitches, I was told to look up into the stands. I could see that the game was being announced over the radio. That made me even more nervous, but I went ahead and pitched three innings. I only gave up one run on five hits, but we still lost the game. After this all the girls liked me, but I did not like the reason that they liked me.

During the summer, my friend and I were picked to play summer basketball. I could not believe that the head coach picked us to play! We went to Yakima, played very hard, and did well. It was that summer that my father became very ill. Very soon, we found out that he had Leukemia. I was very scared for my father, as I didn't want to lose him. Whenever I stayed home to help or be near him, though, he would tell me to go play. We lost him during that year. Also, during my dad's illness, my grandfather developed a severe case of shingles, which required hospitalization. While at the hospital, he had a heart attack and passed away the same year.

My grandfather was one of the first people to bring baseball to Grays Harbor County, Washington. When I was 12 years old, he (along with my dad) taught me to love the game. My grandfather had lost the use of one of his hands in WWII, but that never stopped him. He taught me determination and perseverance by watching him live with one good hand. He would take me fishing and taught me how to pull up a crab pot from 200 feet down in the water. I remember one hot day at Hood Canal when I was pulling up a crab pot; I asked him if I could take a break. He told me to take a deep breath and then said "break's over." He made me keep pulling until the crab pot was all the way up. He told me that if I stopped pulling before the pot was up, I would lose the crabs.

Sophomore Year: In the fall of my sophomore year I did not play football.

I started playing basketball, but would throw up after running lines. I also began to have balance problems. I lost a lot of weight and began to look scary. I did not know what was wrong or why. My Mom was getting nervous about me, and so was I. The first neurologist that I went to took a blood sample, but could not tell us anything. MS cannot be detected through blood work.

We then went to another doctor, who took more blood, again with no diagnosis. Six months later, we finally found a doctor who I really liked. She also took some blood, but added an MRI scan. The scan revealed spots (lesions) on my brain that are caused by MS. I asked if the lesions could be removed surgically and was told that they could not be removed at all. From that point on, I was completely nervous, because I did not know if I was going to live or die.

My mom told my doctor that I was stressed out about the disease, so the next day the doctor had me come in to talk about how I was doing. I told her that I was afraid of dying. She then told me that this disease couldn't kill me unless I let it. After this talk, I went back to playing basketball.

In the first six months I still felt decent, but I started having numb spots on my body, first in my chest, and then in my left leg. But I wouldn't let it stop me. One game I particularly remember was when we were playing Centralia. I had been fouled, and when I went to the free throw line, I had to call for a time out, because I started feeling sick. I ran into the bathroom to throw up. When I came back, the coach made me sit, and I did not play any more basketball after that.

During baseball, I started out feeling really good. I had been picked to pitch the first game. I ran out onto the field. I looked and felt normal. I struck out the first three people that I faced. Then in the fifth inning, I started to sweat and get hot. I began to see double in my vision. From that point on I could not throw a strike. I threw my mitt on the ground and called a time-out. The coach came out to the mound and asked what I was doing. I asked him if he would please take me out. At first he said, "no way," but I insisted, so he finally took me out for which I thanked him. After the game, I sat him down and explained to him what was going on with the MS face to face.

I also remember being at the senior Babe Ruth games where I would stand in the dugout and cheer. During one of these games, I heard somebody yell out my name behind me. I turned around to find that it was a local businessman. He offered me a job; he had heard that I was looking and that I had been turned down twice. Right after this I had been picked to be on the Senior Babe Ruth Team that was going to Utah to play in the World Series. Even though the coach knew all about me, he did not want me to miss the experience. I did not do badly, but the heat got to me.

During the summer, I continued to deteriorate to the point that I could no longer walk on my own. My left foot would drag, throwing my entire balance off. One neurologist that I went to told me that I would never walk again and should get a wheelchair. He also told my mom that I should be placed in a nursing home for the rest of my life. I sunk into a deep depression as the doctor's words replayed in my mind. My goal in life had been to be a major league baseball player, now it seemed that everything had been taken from me. I lay in bed unwilling to get up.

My family, however, was unwilling to let me lay. My mother was a strong support for me. She told me not to listen to that doctor and said, "you might bring every gray hair out of my head, but you will walk!". She told me I was not allowed to lay around, but to get moving and do somthing, ANYTHING, even if that meant pulling weeds from the flower beds on my stomach.

My uncle Bill introduced me to "no pain, no gain." He came in the house one day and saw me sitting on the couch. He came toward me and held out his hand and told me there were two ways to go for a walk: either take his hand, or he would pick me up and carry me out. I took his hand.

My brother was very understanding and helped out in the same way as my Uncle Bill. I always looked up to my brother and there was always a need within me to out-do him in sports. If he did well in a sport, then I wanted to do it better. I remember playing Babe Ruth when I was 12 years old. My goal that season was to out-do my brother who had thrown a no-hitter when he was in Babe Ruth. Even though I was not able to do so, I was able to hit a home run, which was something that he had not been able to do. We still tease each other about that. During this time of my life, my brother was still making challenges for me to overcome, but now the challenges involved learning to perform the daily necessities of living.

The first time that I was hospitalized (for dehydration), my uncle Ken came to take me for walks. I remember one time when I had stayed with him to watch him play in a slow-pitch game. He was playing in the far right field in a box of four fields. I was there watching him. When it came time to leave, he gave me a piggyback ride all the way back across those fields. Since I am over six feet tall, that was no small chore. When we got back he told me that he was "getting too old for this."

Junior Year: This was a tough year. I did not play any sports. Instead I tried something new: physical therapy, which helps me very much. During this period I learned the truth of the "no pain, no gain" rule. This saying is absolutely true for anyone like me. Feeling the pain makes your brain remember the muscle that you once had and can 'wake it up'. I made good friends at physical therapy. One man, a retired sheriff, helped me with the stair stepper. At first I could only last a couple minutes. It was hard, but my friends made me show them what I could do each time I came. They helped me to realize that this was not a game that I was working for; it was my life I was fighting for.

A friend of my family, who was the school Superintendent, knew I was struggling with my schoolwork, so he got me a good tutor that really helped me out. When I would get to school in the morning, I always had help walking through the parking lot and to each one of my classes. Since I was not able to drive during the winter, my mom drove me to school. I remember one time when I got to school and pulled into the icy parking lot that the whole wrestling team came walking toward the car. The first guy that made it to the car (one of my very good friends), pulled the car door open and asked, "Are you ready?".

Before I got the chance to answer, he turned and told the team to pick me up and carry me to class. They didn't want me to slip on the ice and hurt myself. All of this helped me during what turned out to be one of my toughest years in High School and my life in general. During the year, I kept asking myself, "What is going to happen next?". I did finish that year, but I knew that I still had one more year left to go.

During the summer I made an oath to myself that this disease was not going to beat me. I decided that God had put me in this situation to see what I would do. I had never quit in my life. I had always hated the word 'quit' passionately. A football player cannot drop the ball, but must run for the touchdown, believing that he can make it.

After this decision, I had to learn the difference between what I could do and what I could not do realistically. This is a lot tougher than you may think. I was doing a little walking on my own by that time. I still have scars on my arms from when I would practice walking in the yard, going from bush to bush and falling down every three steps; getting cut in the process.

Senior Year: My friends continued to help me out in getting to my classes. They also nominated me for the homecoming court. At a football game, they announced the winner, but instead of having the couples walk up onto a platform, they took it easy on me, letting us stay on the ground. Even though I did not win, I had a lot of fun. With my friends' help, the winter was not as tough as I had thought it might be. I continued to work very hard with my tutor. I also did some new and wonderful things that year. I got the chance to go skydiving just before graduation. It was a total rush! Also, another friend helped to arrange for me to be baptized. A new world was beginning to open up for me.

High School Graduation: This was such an important time for me. GRADUATION! I got to walk down the aisle with a good friend. When they finally called my name, I stood up and so did everybody else in that gym. After I stood up, I got a long, loud round of applause. After I got my diploma, I received a big kiss on my cheek from a good friend of the family. I then walked back out with my escort, and I gave her a kiss and said, "Thank you". Everybody afterwards came out to the room just outside of the gym were we all shook hands and kissed and hugged each other. I also went to the all-night graduation party, where there were dancing, games, pictures to remember, and good food. I stayed up until 3am dancing.

Employment: My first job was at Barrier West when I was 17 years old (1992).

My first day was a lot of fun and interesting. I learned many things and made some good friends. I was walking on my own, but still very shakily. During this time, I would still look out at the ITT Paper Mill across the way where my grandmother, dad, and brother worked. It was my dream to work at the ITT Paper Mill. I told a bunch of my friends that I wanted to work there. My friends would tell me that I was too sick, and that they would never hire someone like me.

When ITT closed the mill, a local businessman (the same one who hired me at Barrier West) reopened it with the help of a group of local investors. When the new Grays Harbor Paper mill got started, I was told to get training on three computer programs: Word, Excel, and Access. After I did this, I got the job that I had wanted for so long at the paper mill, working as a receptionist. I was 20 (1995) when I got the job. It was one of the biggest accomplishments of my life.

Today: I am now 25 (2000) years old. These days I have been feeling good, and still holding down my very good job at the paper mill. I still exercise with physical therapy, and eat healthy foods. I recently went on a cancer walk and helped to raise $2,500 by walking seven miles over a two-day period. I play golf - not well, but I have a lot of fun.

My dream was once to become a major league baseball player, now my focus is on the joy of living and the new things I can learn every day.

I hope that after reading this, people will be helped and realize that life with MS is not over; it is just newly starting over again.

I want to encourage you to try, if you don't you will never know if you can make it or not. You are the first barrier to cross. Convince yourself to hate the word 'can't'. I want to do better than the cards that I was dealt; you can too. If you want it, go after it. Dreams are important, but we are the ones who must work hard to fulfill them.

I know that God is a reality, and believe that my dad and grandfather are with Him. I always believed that God was helping me in every step I took when I was learning to walk again. I knew that if my foot was dragging, then it was a test for me to see if I would do my part or go to the nursing home.

It is easy to fall into the trap of expecting God to do everything for us, when it is He who allows events in our life to see what we will do. We cannot, by the force of our will, make hope live in our hearts, but God can place it there, then it is up to us to do our part. We must direct our mind and heart by determination to do what we can do for ourselves, trusting God with the heart changes and other things that we cannot do.

Everybody take care, and remember that your life is not over; it is just the beginning of a new adventure.

[Make Friends] [Be Inspired] [News] [Contact Jooly]