by Andi Buchanan
Ann Fields is passionate about education. She’s spent the past 31 years as a special education teacher. And so it’s no surprise that she views her upcoming retirement party, on June 2, as a teachable moment. Even the invitations she made to hand out among her local community double as brochures to educate friends, family, and strangers alike about the signs and symptoms of a condition called spinal cerebrospinal fluid (CSF) leak.
Ann’s experience with a spinal CSF leak began after sneezing one day in 2015. That sneeze was all it took to cause a tear in her dura mater, the tough membrane surrounding the brain and spinal cord. Unbeknownst to her, she had a herniated disc that had calcified and was systematically rubbing on one small area of her dura. Her sneeze caused that weakened spot to tear open, which allowed cerebrospinal fluid to leak out. Like many patients, she had debilitating head pain, as well as other neurological symptoms, including tremors. Doctors misdiagnosed her with migraine, tension headache, and even mental illness before finally recognizing that what she had was a spontaneous spinal CSF leak.
“As an educator, I’m extraordinarily frustrated that education [about this condition] is a problem,” she says. “That’s why I wanted my invitations to have educational information embedded, so that anybody who picks up my invitation leaves educated.”
Now that Ann is healed from her leak, she is passionate about working to raise awareness. She was initially reluctant to have a party celebrating her retirement, as she already felt so indebted to the friends and family who supported her during her illness. “I really didn’t want anybody to give me anything, because these same people have surrounded me like a village, and protected me and supported me and loved me. They’ve already given me everything I could possibly ask for,” she says. But she began to envision a retirement party as a way for the whole community to come together, and a way for her to raise money for research so that patients who are still suffering might benefit.
A local bar and restaurant agreed to donate the space for the afternoon, shutting down the restaurant to host the party, which is free to anyone who wants to attend. Ann has worked with a committee of friends and colleagues to create a raffle for people to enter, themed gift baskets for guests to bid on, and T-shirts for sale boasting the acronym Ann came up with for CSF: Courage, Strength, and Faith. The money she raises through donations, the raffle, gifts baskets, and T-shirt sales will go to the Spinal CSF Leak Foundation.
“Retiring is bittersweet,” says Ann. “I love teaching. It’s me. When people say, Well, what are you going to do in retirement? The answer is, well, obviously, I’m going to work! I’ll be doing that long into retirement, just to stay connected.”
Mostly, she says, she hopes to inspire people to be brave. “I’ve wanted to do something to help support spinal CSF leak research, but I was just so intimidated, because I didn’t want to ask people for stuff or draw any more attention to myself. But I realized, not only do I really want to do this, I really need to do this. And so I had to overcome that fear.”
One of the things she learned while living with her spinal CSF leak was that while she couldn’t control what was happening to her, she was able to control how she responded to it. And that’s a lesson she plans to carry with her into recovery and beyond.
“As I graduate from school—that’s what I’m calling my retirement—it’s time for me just to start sharing my insight on what kept me brave throughout all this,” she says. “So I know what I need to do, one step at a time. I want to just first catch my breath, and understand what the trajectory for me is moving forward after this major life change. But I know that opportunities will be there. And I know that the right opportunity will just happen to say, ‘Hey, Ann, did you notice this?’ I just know it will.”
Her graduation party this weekend is a perfect start.