Keynote Address: Paula Lazzeri

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Hello everyone. It is wonderful to be here with all of you. Over the past weekend, it has been great to spend time with my old friends, and it has been wonderful to make new friends with so many of you. We all share a very special bond.

No matter where we come from or our backgrounds, we all share some life changing experiences. If you have Transverse Myelitis or ADEM or Devic’s disease or Optic Neuritis, I understand what you have been through. I can relate to the experiences you’ve had. We can share these experiences in words, and by sharing we can help each other feel better, or we can just sit with each other in silence, and we will both know and understand. We do have a very special bond.

I have had Transverse Myelitis for 25 years. I was a happy, healthy 12 year old girl. I was very athletic and had been involved in gymnastics since I was three years old . I had hopes of one day making the US Olympic team. It was around the time my parents were considering private training that my life was about to change.

One morning in 1979 I woke up with extreme back pain. It was so bad that my parents took me to the emergency room. The doctors said that it was probably just a pinched nerve, and they sent me home later that morning. They said that I would be fine. By the time I got home, my knees began to buckle, my balance was off, and the pain in my back was horrible. No one in my family could believe that anything was seriously wrong with me as we had just returned from the emergency room. I laid down trying to rest and stay calm and I felt a wave of paralysis go from my feet to my neck. In less than one day I went from running around and doing cartwheels to becoming a C 6-7 paraplegic bound to a wheelchair. The same doctors that had seen me early that morning were there to see me paralyzed that afternoon, and I believe we were all shocked, scared, and confused. It took a month before my parents, family, and I heard the words Transverse Myelitis.

The time before I received the TM diagnosis was agonizing for me and for my family. I was only able to see my family through a glass window, because the doctors were afraid that I had something that was contagious. I endured many tests. I repeatedly asked the doctors and nurses, “Am I going to die?” No one would respond to my question. It was a frightening time for my family. It was a terrifying time for me.

We finally heard the diagnosis, Transverse Myelitis. The diagnosis did not clarify for us anything about what had happened to me. We were just surrounded by uncertainty and we had no idea at all what the future held in store for me. I felt like I was totally alone on a deserted island.

Through the support and encouragement of my family, I decided early on that I was not going to let Transverse Myelitis and my symptoms defeat me. I refused to accept the admonition from my doctors that I would always need help, that I would never walk, or that I would not be able to do anything for myself or that I would lead the life of a normal woman. The struggles were varied and frequent, occasionally painful, always frustrating, and at times filled with tears.

My family was always full of determination not to let these ideas get the best of me. Their love and their nurturing carried me through many difficult times. They believed in me, and they helped me to be able to believe in myself. My brothers and sisters did not treat me like an invalid. I was given no special treatment. My brothers would play football in the living room when my parents weren’t home. As I couldn’t play with them, I would tell them that I was going to tell our Mom and Dad on them as soon as they got home. My brothers would push me in my chair into the corner of the room, nose first, and would wedge tennis shoes behind my wheels so that I couldn’t move. Okay, not very nice but I survived. Plus I knew my Mom would serve her brand of justice when she got home.

I once heard a football coach say, “You are never a loser until you quit trying.” I understand that concept and I agree with it wholeheartedly.

I have pushed on through four major spinal surgeries, three of which failed. The fourth was finally a success. I had a full spinal fusion to handle the scoliosis that I had developed after getting TM. I have endured the months and months of separation from my family while I lived at Children’s Orthopedic Hospital in Seattle with only short visits to home on the weekends. I tried to keep my determination in tact while I fought for my rights and the rights of other young people in the hospital. We wanted to be treated with dignity and with respect. The staff at the hospital was treating all of us like infants, and it was demoralizing and disheartening. The results of my efforts were that the hospital instituted some major changes regarding its policies impacting young male and female patients and their needs.

I persevered through three years of high school. While pushing my way across the campus, I suffered a collapsed lung. Those were three years of very sore palms and battered feelings. Those were three years of very few friendships and very limited access to school functions. High school can be a difficult experience when you look and act just like everyone else. It can be excruciatingly difficult when you look and act differently than everyone else.

I had it in my head and heart that I was going to walk across the stage to receive my high school diploma at graduation. I worked really hard with my physical therapist. There was blood, sweat and a river of tears, but the final result was that with the aid of a walker, I took 15 steps across the stage and accepted my diploma from the hand of the principal. It was truly one of the most satisfying moments of my life. I went into high school quiet and trying to blend in but left it with a bang! I still see fellow students and their families every now and then who tell me what an impact that made on them that day.

I went on to college and graduated with a degree in business. I have worked as a tax accountant for the past 15 years. Working has also had its ups and downs but by far the experience has been worth it. Not long ago I gained a nick-name from my co-workers. I recently got a new wheelchair and for the first time I had the seat set at an angle. I was not used to the way it was balanced. While delivering files one day, I ran into a cubicle wall and flipped over backwards. Thankfully, a coworker that sat close by came to my rescue. I felt totally helpless and embarrassed, and I shed more than a few tears. I was mortified. A few minutes after the fall, I talked to Sandy about it. He helped me to dust off my ego and we had a good laugh about it. I moved on and tried not to look back. My coworkers now call me “Flipper.” I made the mistake of sharing the story with my husband and son and the new nickname has now traveled home and to my church.

Twenty years ago I met the man of my dreams. We have been married for over 17 years. He is an incredible husband who is sensitive, romantic, and devoted to me, always making me feel beautiful and successful. Our decision to have a family was another milestone in my life. With the help of a high risk OB we forged ahead blindly for there was no information that existed medically on pregnancy and TM. I call my 11 year old son, Jesse, my little miracle baby because he is just that! Motherhood has been so rewarding, not always easy, but I’d never do it any other way.

I have served as the treasurer for the TMA the past ten years, I drive my own van, I take care of my home, and I love to play and watch sports. I sit snow ski but will never be a Picabo Street. I play tennis but will never be a Serena or Venus Williams. I ride a hand-powered bike but will never be a Lance Armstrong.

I believe we can accomplish anything we set our minds and our hearts to do. If you are willing to work hard at it, and to believe in yourself, and maintain a positive attitude, and remain focused on your goals, you can reach for and achieve your dreams. I have succeeded because I won’t give up. Picabo Street or the Williams Sisters or Lance Armstrong cannot outdo my determination and perseverance; they cannot outdo my spirit and my heart.

I have come to believe that if this had not happened to me, I would likely have gone on as a healthy, happy human being but perhaps never fully realizing the blessings that were truly mine. Today I am thankful for the use of my hands, my eyes, my ears, my mouth, my mind, and my heart. My parents tell me I had an extrasensory smile before I got sick and that I never lost my smile through it all. People react to my smile. I intend to keep that smile throughout eternity, so get used to it.

That smile reflects my attitude about life. I have had to face many challenges in my life. I have had to endure numerous physical and emotional hardships. But my positive attitude and my sense of hope for today and the future have never been diminished. My life is good, because I will have it no other way. My life is beautiful, because I choose to see life this way. We cannot control all of what happens with our bodies, and we cannot control what goes on in the world around us. But we do control how we think about and feel about ourselves and our families and the world we live in. And it is all good; life is very very good.

My extended family is always supportive and ever close to me, as you see in my sister Donna who is here in Baltimore with me. Love you, Donna. My TMA family has fast become a huge part of my life. There are several people here Sandy, Debbie, Stephen, Doug, Adam, Chitra, Heather, and Drema to name a few who mean the world to me and get me through life with TM. I cannot forget to mention one person who is not here, Jim Lubin, who is an amazing person. His philosophy is “When life isn’t the way you like it, like it the way it is, one day at a time.” He is so inspiring to me and to everyone who knows him. I am so privileged to be able to see Jim and Helena and to spend time with them.

I am constantly blessed by a heavenly father who took this broken clay vessel and reshaped it into the woman I am today and continues to use me to reach others who need to hear what we can all become with His love and with our own minds and hearts and spirits.

I’d like to end with a favorite verse from the bible. “Consider it pure joy, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.”