Wednesday, July 18, 2018

Listen In

Last week I listened to the Podcast "Who Lives Like This".  Elizabeth Aquino and Jason Lehmbeck  interviewed special guest Paige Figi. Among a myriad of other things, Paige is the mother of Charlotte (of Charlotte's Web fame). There is much that has been written and televised about Charlotte's story but little about Paige's journey as a caregiver.

Let me just say Paige and I appear to have little in common except for the critical fact we are caregivers to children with intractable epilepsy; Charlotte, age 11, with Dravet, and my Michael, now 33, with what is described by the professionals as "LGS-like" epilepsy.

I was struck by Paige's zest for life and adventure and her commitment to doing what makes her happy so that she is there in every way for her children and all the other caregivers and children she works so zealously for. I encourage you to listen to the interview.

We've been dealing with Michael's epilepsy for over 28 years. We don't have the constant 24/7 scenarios of so many other caregivers because there have been months, even years, when Michael's daytime tonic or other potentially catastrophic seizures were not an issue. That reminds me of Elizabeth's words to her son Oliver, " And some have it better...". However, even during those times of respite there was anxiety regarding the always present uncontrolled nighttime seizures, the pain of observing how the anti-seizure drugs while effective with seizure control were dulling the mind, the experience of other effects of the drugs including behavior issues, lack of concentration, weight gain, weight loss, word finding difficulties, sleep issues, learning difficulties and so on and on and on...

Dealing with a chronic, sometimes, debilitating condition is so much more than dealing with the medical system. That would be enough for sure. But when one adds school system issues, haggling with insurance companies, bullying and isolation, stigma and discrimination---well---it's a lot. If you've been there, you get it. If not, there's a pretty good chance you don't. But, if you listen to the podcast referenced above, you might.

During our most recent battle with the epilepsy beast, I tap danced whenever I could. Yes. Tap danced---FitTAP to be specific. Those hours (sometimes 5 or 6 a week) listening to show tunes, rock, oldies, and Bruno and other contemporary artists while concentrating on  flaps, shuffles, balls, digs and riffs---well---those hours sustained me.

Caregiving can be exhausting and draining. Find that thing that works for you. Whether it be an activity or a place. Find it. Make time for it. Refresh and renew your spirit.

And one more thing. If you're a caregiver, please tune in to Elizabeth and Jason's podcast You'll be inspired and moved to tears as well as laughter--- and you may learn something that will help you to sustain and renew. Promise.