Living with a spinal CSF leak is difficult. And when you’re a caretaker of others, it can be even more of a challenge. Add to that the cultural expectations that exist around motherhood, and many mothers living with leaks find themselves stretched as thin as dura mater in their attempts to handle it all. Dura mater means “tough mother,” but we know from our experience with spinal CSF leak that even this hardy membrane can have its vulnerable spots—and that trying to power through and ignore our symptoms can often make us feel worse. All week this week, we are sharing stories from mothers in our community about what it’s like to mother while leaking. Their experiences of grappling with uncertainty, grief, and resiliency as they navigate illness and parenthood illuminate how learning to be vulnerable, flexible, and creative honors the “tough mother” in all of us.
How many children do you have?
I have two children, 17 and 8, both with autism. My symptoms started after the birth of my eldest child. He just got his driver’s license this month.
What has been the most difficult part of mothering while living with a spinal CSF leak?
The hardest part used to be knowing I was sick when no one else believed me. If nothing else, I am grateful I finally got my tell-tale MRI and diagnosis after so many long years of fighting for it.
These days, it’s hard having to spend so much time physically apart from my family. I miss out on huge chunks of their lives like school concerts and trick-or-treating and family holidays and hikes in the park because I can’t follow them out into the world. I miss a lot of family dinners because I can’t sit up at the table in our kitchen. I’m not the person I used to be.
It’s equally hard having to rely on my spouse to make up for all that I used to do as a super-mom. Now my husband has to shoulder the work and care for all of us, while I lie here sometimes struggling to remember what day it is. We do the best we can—we eat a LOT of takeout, and I have learned to live with a cluttered house that would make my mother turn in her grave. We adjust. Still, it’s tough on our marriage. The stress is not good for his health, and the kids suffer for want of two healthy, involved parents. Plus it hurts them to see me this way.
What was the most creative way you managed to parent while ill?
During the pandemic my daughter attended school online at a desk set up right next to my bed (but I wasn’t the one onscreen, thank goodness). Basically I got to experience every moment of kindergarten through first-grade right alongside her. It was challenging for both of us, but also a very special time between us. I wrote an essay about the experience that was later included in an anthology.
How are things now?
Sadly, in my case diagnosis hasn’t lead to a fix. I’ve been bed-bound for three years this May due to my leak, this after three dural surgeries and more blood patches at more hospitals than I can count. It’s all been traumatic, physically and in every other sense. I’ve been holding on for such a long time now. I’ve proven to myself just how strong I really am, but even the toughest mama bear has her limits. With each passing year I get weaker, and the longer this drags out, the more it looks like “better” just isn’t in the cards for me. That’s the hardest thing of all to come to terms with.
What do you want other moms to know?
My advice to everyone but especially mothers is to trust your instincts. We know our own bodies. We know our children. The medical system as a whole is not doing a great job at seeing and hearing us right now, so as patients or carers for patients we have to become experts in our own conditions, very quickly, and we have to come prepared to advocate for the best possible medical attention. Everybody deserves that much.
Further Reading:
See our “Tough Mother” profiles from 2022:
Ketura spoke about the importance of appreciating small moments.
Kellye spoke about the importance of letting things go.
Lindsay spoke about learning to “ride the wave.”
Sanela spoke about letting your kids help you in their own way.