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 boys. Gabe is now 23 and Ben is 17.
How did your leak affect them?
I leaked for the first time in 2017. The boys were affected by my illness but didn’t talk about it. They came into my room to say hi after school or work, and they saw me at mealtimes when I got up and sometimes sat at the table, but they were scared. They were also resilient. They spent a lot of time with their friends, and they connected to their father more. They did more chores and they kind of just got on. It was a strange time. A difficult time. A horrible time. I then got well. I was up. Back at work. Back to myself. However, if I did any yoga, gym, or heavy lifting, my head went funny and a tiny voice in my head said, “Stop. Go slow.” I didn’t tell the boys. Then August 2020 I was bedridden again with a leak. I had two blood patches and lots of coffee and a new team of doctors and support from fellow sufferers online. But this time the boys were indignant: how could this have happened again? Gabe was absent a lot, but Ben was affected the most. He saw how incapacitated I was. He resented doing laundry and garbage and helping with the running of a home.
What was the most difficult part of mothering while leaking?
The difficult part of mothering through a time like this is that you are clawing your way to helping yourself. Thoughts of “heal and seal” was all that consumed me. I focused on trying to shower, eat, connect with people, trying to resist drifting into a world of pain and pressured fog that was endless and unforgiving. I felt like I abandoned my children and relinquished my responsibilities to my husband.
What was the most creative way you managed to parent while being ill?
I wrote them letters and texts. I sent them pictures of the cats.
How are things now?
Now I am feeling better, and things are different. The boys are older. Gabe is living interstate. Ben is in his second to last year of high school. He has a girlfriend and talks on the phone with her for hours. He has a great group of friends. I am different. I am much more introspective. Much more connected to myself and my body. Gentle with my time and guarded by my limitations. Curious about what has happened and what will happen. More sensitive to other people’s plights and life journeys. Committed to making good choices regarding recovery and maintenance. Learning to be slow and to move mindfully and consciously. I’m figuring out my new me.
What do you want other moms to know?
I want other moms to reach out to other moms. There were friends who dropped in with food. Who sat at the end of my bed and just spoke and shared their stories. It helped.