Lynne Doebber lives to learn. She’s not just curious. She’s intensely curious, high-octane curious. She’s “I-go-on-archaeological-digs-for-fun” kind of curious. Today, Doebber lives a semi-retired life in Asheville, North Carolina, where she volunteers at a lifelong learning center. Before moving to Asheville, she worked as a history teacher and a librarian for a pharmaceutical company.
She used those skills to tackle a late-in-life diagnosis with common variable immunodeficiency (CVID), a primary immune system problem. “This was not a death sentence, I told myself. Being a librarian, I had the research skills and as a teacher, an active mind. I said someday I’ll own this disease.”
And own it, she does. Over the last eight years, Doebber has guided more than 600 newly diagnosed PI patients. She counsels them about the simple mechanics of an immunoglobulin infusion and the sometimes complicated mechanics of hope and perseverance. Here’s how she describes her role:
“An advocate provides a listening ear, takes a hand, opens a heart, opens a mind and helps show the way.”
What is the most interesting thing about Lynne Doebber? We let her answer that.
Age of diagnosis with CVID:
54
I’m proudest of:
My daughter, Rachel, my son, Ian, and my grandchildren, Mikala and Grayson.
Goal I’m striving toward now:
To learn something new every day and stay active and interested.
Something I learned the hard way:
I’ve learned to say no. After my diagnosis, I felt much better but I couldn’t catch up on everything like I thought I could. I was going through a rough time. I just learned I had CVID, my mother had been battling Alzheimer’s for 13 years and would die six months later, I was coming back from encephalitis and learning to infuse. I set my energies on things that were important, like getting healthy and helping my father cope with the loss of my mother. Eventually, when I got better, I would go back to work part-time and take classes at the Reuter Center, the University of North Carolina-Asheville headquarters of the Osher Lifelong Learning Institute, a college for seniors.
Best advice anyone ever gave me:
I developed a friendship with an older widow. She told me, “Lynne, when a door closes, another one opens.”
My idea of the perfect day:
I’ve already experienced a perfect day. A while ago, my husband and I went to Kelly Place, a bed and breakfast at an amazing archeological site in Colorado. We spent the day there and we took a tour of the Anasazi “cliff-dweller” ruins. We were part of a group that helped the Bureau of Land Management sort through artifacts. They only had so much time and they never had enough help cleaning, counting and cataloging. They had mainly pottery shards - black on white, polychrome colors, gray pottery with texture into clay. The coup was to find the lid of a jar because those are the rarest.
That was exciting, just to feel and touch something someone had created around 1000 A.D. to 1300 A.D. I felt I was going back in time, like in a time machine and having a little window into how other people lived and the crafts they perfected. I felt this tremendous connection. Usually in museums, you can look but not touch. By the end of the day, we were dirty and exhausted but happy to share some pizza and beer.
Favorite artist: Georgia O’Keefe. I love her flowers. My favorite of her paintings is Black Hollyhock, Blue Larkspur. I admire Georgia O’Keefe as a strong woman. She made a name for herself at a time when women were supposed to sit with their hands in their laps. She was the mother of modernism.
Favorite musician:
Joan Baez. I lived during that time. What she thought was important, I valued too. Her music takes me back. Very powerful.
Favorite movie:
I have four and all of these movies are about people who made a difference:
My most prized possession:
My mother’s 1946 engagement ring. I wear it on special occasions. During hard times, she never hocked it. I’m going to pass it on to my daughter. I really feel close to my mother when I wear it.
Something people don’t know about archaeology:
Archaeology helps us figure out where we are. In archaeology, we look at ancient people and try to construct what their lives were like. What we often forget is that there are similarities among all people. Humans have shared the same desires and we have more in common than we think – family, friends, love of our children. All want to live safely and free of threats. We want food and clean water. People stress on the differences and the hatreds. Our forefathers said “life, liberty and the pursuit of happiness” and we’re not there yet. We need to focus on the positive that we’re all one people and share this world together.
Something most people don’t know/understand about CVID:
CVID is an invisible disease. People look at you and think you’re a healthy person, but they don’t realize what you’ve gone through to look like that. You’re never going to be better. It’s a life-long commitment and a challenge. It took me 11 doctors and more than nine years to get a diagnosis, until I found someone who really listened and looked for patterns and saw the forest for the trees.
Most common question people ask about my illness:
When people hear I have this disease, they actually move away from me. Or they don’t want to shake my hand. I tell everyone it’s not contagious. I tell them it’s genetic. I also tell people CVID is not one size fits all, hence the name “variable.” It affects people differently.
My advice to anyone who’s living with CVID:
Don’t throw up your hands in defeat. You have to be your own advocate. It took a while to get sick, it will take you a while to come back. Have patience. Gain knowledge. The more you know, the better decisions you’ll make. Don’t be afraid to ask questions. It’s not the same treatment for everyone. You have options. There are a lot of variables that can be tweaked. The best thing I can give a newly diagnosed person is hope.
The most interesting thing about me is:
My ability to make people laugh. I have a very sarcastic sense of humor and I’m straight faced. Sometimes the best way to fight fear is to laugh. When I attend advocates’ training, I’m always cracking jokes even though I look like a stern librarian. People tell me, “Lynne, you should have been a stand-up comedian.” I try not to take life too seriously. You just have to laugh. That’s how I’ve stayed married 43 years.
