| Posted on April 19, 2004 at 11:10 a.m. | ||
| WHAT: | UAB President Dr. Carol Z. Garrison will present the Arthritis and Musculoskeletal Diseases Center’s Community Service Award to Sandra W. Falkenhagen, director of public health and advocacy for the Alabama Chapter of the Arthritis Foundation. The award is the center’s highest honor presented in recognition of an individual’s contributions through community service to improve the lives of people with arthritis. | |
| WHEN: | Wednesday, April 21, 2004 | |
| WHERE: | UAB President’s Office | |
| WHO: | Falkenhagen was diagnosed with rheumatoid arthritis in 1978 and immediately began her fight against the disease — for herself and on behalf of the more than 70 million people in the United States with arthritis. She signed on as volunteer with the Arthritis Foundation and became actively involved in building on the organization’s programs and resources. Before joining the foundation’s staff in 2000, she held numerous volunteer positions on the local, state and national levels of the organization. As director of public health and advocacy for the foundation’s Alabama Chapter, she continues her service through myriad activities. She makes frequent appearances and presentations at conferences and seminars and is a co-founder of the Coalition of Health Agency Partners, a state advocacy organization for agencies representing people with chronic illnesses. She also coordinates media relations activities; writes grants and provides counseling and assistance to individuals. | |
Sandi’s Story
By Sandi Falkenhagen
I’ve been on staff with the Alabama Chapter since January, 2000, but I’ve actually been involved with the Foundation for more than a quarter century.
I can barely recall what I did yesterday, but my first encounter with the Arthritis Foundation is clear in my memory, because it involved both the happiest and the most distressing junctures of my life. After years of hoping and praying for a child, my husband Brent and I were thrilled when our son was born in October of 1978. But within a week or so, I began experiencing terrible pain, swelling and stiffness in my legs, feet and hands. Soon, instead of relishing the joy of taking care of the baby I’d waited for so long, I was the one being cared for. I found myself completely helpless, unable to perform the simplest tasks. I had to rely on someone else to bathe, feed and dress me. I couldn’t walk, turn my head or chew, hold a glass, turn over in bed or get off the toilet without help. Even more devastating, I couldn’t pin a diaper, hold a bottle or even crook my arm to cradle my son.
The very suggestion of rheumatoid arthritis was like a death sentence for me. I pictured myself like my grandfather: a proud hulk of a man reduced to a cripple, who spent the last 20 years of his life bent and deformed, shuffling along on a cane or crutches, many days unable to move at all. I couldn’t do that to my young family. I prayed to die.
Until then, I’d never had reason to know that something called the Arthritis Foundation existed, but I was desperate for help. The day my diagnosis was confirmed, I asked Brent to look up “arthritis” in the phone book where he found the number of the Arthritis Foundation. He had to dial the number for me and hold the phone to my ear, and when the voice on the other end of the line answered, all I could do was cry. At that time, the Chapter office had two employees. The executive director, who answered my call, waited patiently for me to get enough control to talk. It was obvious that he had been part of this scene all too often. As well as he could, he answered the questions that I had been too stunned to ask the doctor. He had little else to offer — just a listening ear and basic information — but from that day on, I knew I had an ally in my crusade to beat arthritis.
I still haven’t beaten it, but I have been able to enjoy a productive life in spite of it, and the Arthritis Foundation has played a key role. I have learned and grown so much by being an Arthritis Foundation volunteer, not only in terms of dealing with the disease process, but also as a person.
Every time I go to my doctor, I am armed with questions that I would not know to ask if not for the information provided by the Arthritis Foundation through our publications, website and national communiqués. The arsenal of programs and resources that have evolved over the years has been so exciting to me, because I know they can change lives. They changed mine. Each position I’ve held on the branch and chapter boards and event committees has brought with it new personal skills and knowledge. More than once, this Chapter has been on the brink of financial disaster, but it always has been graced with a staff and core group of volunteers that refused to give up. To have been part of that unflagging spirit is priceless.
I’ve also had the great joy to participate in leadership roles at the national level which has enabled me to make friends with other volunteers throughout the country. Most of them have arthritis, and I’ve loved sharing in their triumphs as new medications and treatments have come on line. I’ve learned to be an advocate for others by being an advocate for myself through programs and activities sponsored by the Arthritis Foundation.
From the beginning, I viewed anything I did on behalf of the Foundation as a kind of unspoken pact with God: if I did all I could to help, He would make sure my babies wouldn’t have to go through the hell I experienced. So far, He has lived up to His end of the bargain, and I am a better person for living up to mine. And so are my sons. That baby boy I’d just given birth to when this journey began is now 25 years old, and his little brother is 23. They’ve literally grown up with the Arthritis Foundation. That means they have had probably hundreds of t-shirts of various sizes and event logos, but they also have an ingrained sense of community responsibility and commitment to a cause.
At the end of the century, I decided to retire from a perfectly comfortable, well paying job that I had enjoyed for 27 years in order to follow my heart and devote my energies full-time to this organization and the people we serve. Some friends and family called it my midlife crisis, but I have no regrets about my decision. I have never forgotten the encouragement and understanding I received from the other end of the phone the first time I called the Arthritis Foundation, and I am truly grateful to be in that position now.
Arthritis has affected every aspect of my life — physically, emotionally, spiritually. There have been numerous failed treatments, hospitalizations and surgeries, splints and braces. A bout with breast cancer a couple of years ago was made even more complicated because my immune system is so compromised by the RA and drugs essential for management of the disease. But, as is obvious by my being able to stand upright today, I’ve had wonderful successes, too. Now I can walk all the way from the produce section to the dairy case at the grocery store; you have no idea what an accomplishment that is. I can tie my shoes and turn the pages of a book. Most days I can fasten the catch on a necklace and kneel to pull a weed from my flower bed. Little victories, all. I take no movement for granted.
Nor do I take for granted my great, good fortune to have a loving and supportive family and network of friends, as well as a strong faith that has seen me through the mountaintops and the valleys of this disease. Especially in those early years when my future health outlook appeared to be so dismal, it was invaluable to work for an understanding, caring employer who recognized my worth to the organization in spite of my physical limitations. Workplace accommodations were made for me long before required by law. Receiving an early diagnosis and being treated by a knowledgeable, compassionate rheumatologist all these years has been absolutely essential to managing my arthritis so well, and good medical insurance has made it possible for me to take advantage of the latest treatments. And I have had the Arthritis Foundation. The majority of people with arthritis are not so fortunate. I know, because I talk to them every day, as do my colleagues. We all consider as first priority our role as the “listening ear” to those struggling to find answers, as I was the first time I called. It is for those people that we at the Foundation continue to work to offer help and hope. It is for them that we dream of a cure.
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