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Tom Rogers: A Life Worth Living

Tom Rogers: A Life Worth Living

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Published by William Macfadyen
The autobiography of the late Santa Barbara County Supervisor Tom Rogers, as told to Randy Weiss. Reposted with permission from the Rogers family.
The autobiography of the late Santa Barbara County Supervisor Tom Rogers, as told to Randy Weiss. Reposted with permission from the Rogers family.

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Published by: William Macfadyen on Jan 18, 2013
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07/10/2013

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Editors Note: Tom Rogers, a champion of environmental projects, served on the Santa Barbara City Council and Santa Barbara County Board of Supervisors. tr{e was diagnosed with Amyohophic Lateral Sclerosis (ALS) or Lou Gehrig's Disease in 1994 and retired from public life. His illness and friendship with United States Congressional Representatives Walter and Lois Capps, led to new Federal law waiving the two-year waiting period for Medicare benefits for ALS patients. Tom's 50tn birthdaywas August 16,2001.

A LIFE WORTH LIVING
My Story by Tom Rogers

I ulwuy, wanted to live to be 100 years old. I am now marking the halfiray point in a
very different place than I had thought I would be. Longevity runs in my family. My grandparents lived into their eighties and nineties so I figured I had a good chance of getting at least, that far. People have said that in one's lifetime, you actually live many lives. This is very true in my case. My first life started in New Jersey in a large and loving family with the best parents one could hope for. We loved and he$ed one another and still do. As kids, we played together everyday. Whenever we traveled, it was as family. It didn't matter where we were or whether it was a special place, the important thing and, what made everything special, was that we were together. Through my family, I developed my appreciation for helping others and a deep love of nature. I liked new adventures. The security provided by my family was a foundation from which I felt anything was possible. This proved to be the basis for many risk-taking opportunities as risks are easier to take when someone is waiting to catch you. Sharing these new experiences with my family was exciting and pushed me to want to do more. The outdoors and changing seasons, the ebb and flow of nature, have been a special comfort and delight in my life. Early on, I realized we all have responsibility protecting the natural beauty surrounding us. Memories of the outdoors, of saiiing during the summers on the Long Island Sound at our grandparents' home in Niantic, Connecticut with cousins anO skiing the winter slopes ofNew England are always onmymind. In my family, my brother, Jim, is a year older than me, while Matt is a year younger and Nancy is five years younger. I remember going to the hospital when she was born. Liam came two years after Nancy. He and I roomed together for many yeaxs. At the ripe, old age of 13, I remember thinking, "What a young kid he was at six!" Everyone was keated the same. This seemed fair until high school. I realized Nancy was the only grrl and growing up all the same as her brothers was something that she might not want! It never bothered her and we enjoyed our time together.

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It was an idyllic childhood. We were very lucky.

A Long Way From Home
Wanting to live to 100 is funny for a couple of reasons. The first is I have a disease, known as ALS or Lou Gehrig's Disease, and the second is I'm aiready living on borrowed time. My prognosis would have given me only until age 44, or at the most, 48. I remember the day our lives changed forever. It was seven years ago in Rochester, Minnesota. Two previous years were spent haveling around California tyrng to find out what was wrong with me. The continual pains and lack of coordination and strength increased daily. Since my doctors couldn't provide a diagnosis, I called the famous Mayo Clinic. After almost one week of examinations at Mayo, we still did not have an answer. I was determined to stay as long as it took. On Thursday, April 21,1994I stayed up most of the night writing a letter to my "quarterback doctor" who was directing my tests. I told him that I sensed some hesitancy by other doctors in leveling with me about what disease I might have. I said I was ready to take any test, do any medical experiment, see any doctor at Mayo until we knew the complete story. I desperately needed a diagnosis to know what I had so I could begrn working to restore what I had lost. The next moming, he acknowledged reading my letter. It was an awkward moment when I confronted him, but I finally had someone's attention! He had already scheduled an immediate appointment with a specialist visiting from Great Britain. This doctor didn't tell me what his specialty was nor did I ask. He introduced himself as a neurologist. During my brief examination, it appeared he already knew what he was going to say. "I believe you have ALS,U he said when finished. Those words were devastating. My sister, Nancy, and my wife, Katie, exploded into crying. I stood up and threw my arms around them. I couldn't have made it through without either of them. I didn't want to be
alone.

I knew I had to be strong from that moment on. Since tlen, I have thought of this scene a million times replaying the tape in my head. I've never talked in detail about this with anyone before. It is virlually impossible to accurately describe in words the feelings that I felt at that time and over the last seven years. 'I was overcome with pain, fear and a range of powerful emotions realizing my life, as well as those of my loved ones, had changed forever. There was a crushing weight upon my view of the future, of that moment and my view of myself. I was fighting this feeiing with all that I had, yet, the disease had taken so much from me already. ALS had me in its grasp. It had first weakened me, and then tested my resistance. It only now shows its face. At that moment, it hurt my wife, my siiter and knocked the wind out of me. I wanted to kill it, but it was in me. I was detennined not to let it crush
me.

ALS was in me, but it was not me. I could concentrate on controlling how it would affect me. I could defeat it ttrat way. But my outlook, my dreams, expeciations, and goals for my family, my daughters and I were now forever different. This doctor told us what the diagnosis meant in medical terms. We were numb and he left us alone for a few minutes. A nurse, specializing in working with ALS families, came in and gave us an information sheet explaining ALS, what it does and what to expect as a
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family. She said for most ALS families, it causes almost unbearable shain and financial ruin. She wanted us to know what we could anticipate.

AMYOTROPHIC LATERAL SCLEROSIS (ALS)
ALS, a disease of the neryous system, is a degenerative and fatal disease. Often known as Lou Gehrig's Disease, this progressive disorder is characterized by muscle wasting, paralysis, speech loss, and inability to swallow and breathe. ALS does not affect the intellect or the senses. There is no known cure at this time.

After answering our many questions, I thanked her for performing her most difficult job. We appreciated her honest description of what to expect and it was not a pretty picture. I also thanked my "quarterback doctor" for a diagnosis. We now knew what "it'
was.

At that time, I really didn't know what I was going to do. It was like living in two different worlds. Tryrng to process what had just taken place in one and keeping it all together for everyone else in the other. I knew I would not last very long iiving like this
so I began bringrng these two worlds together. This would be my new life. Life is what you see in front of you when you open your eyes. We decide what to do with it; we make choices about how to five the lives we are given. We make the direction, the attitude, the decisions, and transcend the threats.

I

desperately needed a diagnosis to know what I hatt so I could begin working to restore what I had lost,

Leaving the hospital with this new information was eerie. While eating dinner at a local restaurant, we noticed someone smiiing at me from the next table. Nancy, Katie and I thought it was a little weird. This guy then walked to our table with his femaie companion and asked, "Aren't you Tom Rogers?" Amazed and miles from home, both literally and figuratively, my immediate thought was, 'oYeah,I'm Tom Rogers, but not for long!" This initial reaction gave insight into how fast my mind was racing in many different directions. Instead, I said something light in response and the three of us laughed. It was just what we needed to break the tension. We leamed this couple had moved to Minnesota from Santa Barbara a few months earlier to work at Mayo. They must have thought we were crazy!

The Wonders of Life
Early the next morning, I took Caroline outside on the patio of our hotel room. She was only one and a half years old. It was somewhat overcast, comfortable and very quiet. While holding her close, I noticed the trees, ba:ren a week eariier, now had small green leaves growing. They had new life.

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I looked at Caroline and saw a new, beautiful and most precious life. I wanted her to have a father, as I did, and told her I would be with her for as long as I could. I remembered the ALS information sheet said, "life expectancy is normally two to five years" and that meant Caroline would be between three and a half and six and a half years old when I would die. That was not acceptable and it lit a fire inme. I was determined to do better than that for her and her sister, Claire, who was only a year older. I walked back and forth on the patio holding her, overwhelmed by nature's beauty and my thoughts. I decided to set about fighting back. There had to be ways to increase the time I had, I would find them and make my new life. I would not be dyrng, I would be living and serving as an example for my children as long as I could. I still had very important work to do, including my most important job as a father and parent. My Mom and Dad were great teachers and role models. I have lived with ALS for over seven years now. Looking back, the illrse who described this disease was absolutely right. It strained our family and our finances. With its awesome destructive powers, it robbed my body to the point where I cannot muster air enough to speak. Lr spite of this, it can never slow my spirit or my determination to be with my guls and my larger family. So, it really doesn't matter to me whether I am 42,49 or 50 (although I am still shooting for 100). It's more pleasurable for me to mark my time by the ages of my daughters, Claire, who turned ten in May, and Caroline, who will be nine in September. What really matters is being with them, knowing what's important to them and for them, and supporting their many activities. They are growing into wonderful young people and I thank God they have done so well with all the challenges they face. I am trulyblessed to outlive the initial ALS life expectancy, thanks to my larger family, my friends, and the wonderful people of Santa Barbara who have helped me in every way imaginable. I have no idea how much longer I'll live. I tell my girls I tha* God for keeping me this long and I will stay as long as He needs me. What I do know is that my daughters give me life. Their love is truly a life-giving joy to me. This makes everyday worth celebrating like it's my birthday...

Special thanlcs to my "House Manager Extraordinaire," Joy Fradin, for helping me articalate and my goodfriend and neighbor, Randy Weiss, for helping me write this piece of my life story.

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