I’ve just returned from the annual development conference for the Arthritis Foundation. It’s two and a half days of really intense training sessions intended to increase our ability to serve the mission – which is to Improve Lives. Specifically, if you have never seen it, the Mission of the AF is to improve lives through leadership in the prevention, control and cure of arthritis and related diseases. I attend as a member of the National Volunteer Walk Team. We have a team meeting there just before the conference, and we also assist with some of the presentations.
Naturally, one of the ways we need to serve the mission is to raise the funds to do the work. So, much of the conference is dedicated to that topic. How can we create better partnerships? How can we increase revenue from special events? How can we draw people to our mission?
The overall theme for the agenda was “Telling Your Story”. I can certainly relate to that. After all, that’s really what my blog has been about these past three years. Telling our story….. hoping to spread some awareness, get some help for myself and my family, help some others who might be feeling alone in this journey.
Over the course of the conference, I heard a number of truly moving, truly inspirational stories. I learned about staff who have struggled with the disease personally, in their families or in themselves. And of course, I spoke to other volunteers, who continue to prove that they are often the most effective way to drive the mission.
But it was the closing mission speech that I want to share with you.
My friend Kelli S. was slated to speak last. Kelli is the Dog Walk Chair on the national volunteer team with me. I knew she has RA as well, but frankly, I think of her mostly as a really passionate dog lover. She’s a positive person, but a bit reserved – definitely not the one you’d peg to wear the lampshade or spill her guts.
So when Kelli got up and started talking about how she developed symptoms of her disease 4 months before her wedding, when she was 26 years old – I was shocked. But I was mesmerized. She hooked me in talking about how angry she felt that she was blindsided at the very moment in her life that things were going well. She had two stepsons she was going to be parenting, one whom had special needs, and all of a sudden she was disabled. She couldn’t walk, couldn’t lift her arms, shrouded in pain. At the very cusp of the celebration planning, she had to shift gears completely and start the process of finding successful treatment.
And then she asked how many people in the room were moms. Many, many hands were raised. And then this…. “I could not have biological children of my own, because of arthritis. I could not be off of my medications long enough to endure a pregnancy. I always wanted to have children, to do that… but I didn’t get that choice. Arthritis stole that from me.” I was on the floor. I literally thought I was going to have to run from the room. I was doing that heaving/crying thing into my napkin and I could not keep quiet. because it was so close to home….
I try not to go there in my thoughts about Caitlin. It’s a struggle just dealing with today and getting her over the disappointments that come with the disease, or even just with being a teenager. I honestly can’t stand the thought that one day she will find that she cannot make the choice to have children if she wants to… and that the choice might have been taken from her by some medical decision I’ve made over the years. I cling desperately instead to the stories of people like my friend Mariah, who did manage to have a lovely young baby boy. And even though she has shared her struggles, all the gory little details, her story is so hopeful that I cherish it as it suppresses my fears and guilt in my mind.
Needless to say, Kelli’s story was a powerful truth. It’s the core of why I give so much time and energy – It’s not OK that Kelli had to endure that. Yes, she’s wonderful, her disease is better controlled, She’s overcome and has been a mother to two fabulous boys through marriage. It’s a victory that she is so much better off than she would have been, had she been diagnosed twenty years earlier or even ten years earlier. But that doesn’t mean it’s OK. It’s not OK for the next 26 year old…. or in my case, 3 year old.
She said it best. “I don’t want your sympathy. I want your action!”
Well, Kelli – you have mine. You lit a new fire under my a## with your passion, and bravery in sharing your story. I respect you so much for having the courage to share in front of hundreds of people what you’ve never even shared with some of your close friends before. The best way I can thank you and honor you is to keep the action going.