Epilepsy Blog Relay: Building a Bigger and Bigger Circle of Support when You Have Epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

We all get by with our friends’ support.  Or is it our family?  Or are they one?

I’ve walked through life, my needs have changed.  As a child, I needed the care, feeding, and guidance of my parents.  As an adolescent, my friends were everything to me, my mother became even closer, my father more distant.  Then, when epilepsy slammesd my life at age 18, my parents, once again, became the drivers for my care.  But this is just my story.

In his book, A Mind Unraveled, heralded writer Kurt Eichenwald tells of the “family” he found in his roommates at Swarthmore College.  They looked after him during seizures and were his advocates in the world outside their dorm room.  These were acts born of desire to protect one’s own, and Eichenwald, even artificially thrown together with them as a roommate, had become a part of their family.  It was exhausting, though, and the caregivers could only take so much. 

His story is a lesson we all could stand to keep in mind.  Our caregivers, our family by birth or by friendship, can be drawn on for the basics of life, strength, support, and friendship during our most difficult times.  And in the case of those of us with epilepsy, we often need them for the most difficult years or much longer, even full lifetimes. 

But we, too, need to care for them as best we are able, making sure they have what they need to survive all that we ask of them.

Perhaps a way for us to do this is to build our support system, our “family,” loving them for what they give and mindfully asking for what kind of support we need from each individually.  Is it physical or emotional?  And if the latter, do you need someone who will empathize or someone who will help you solve whatever troubles you?  Do you need rides, food, or other sustenance if stuck at home – and, for that matter, must you rely on family to get them?  The trick is to find additional sources.

If we are unable to support ourselves financially, then perhaps parents or spouses can care for us – again, our mindfully loving them for it.  If we need cheering on, however, sometimes these same people don’t have the energy left to do it, and we can draw from friends or associates from work or community groups.  Then, if we are able to afford it financially, we can take advantage of car services, home delivery from supermarkets.  If we don’t have the money, we can look for government- or nonprofit-sponsored services such as rides for the disabled or resources provided by local affiliates of the Epilepsy Foundation. 

And in drawing on the non-family members, we put ourselves out there.  Many of us hide our epilepsy or shy away from others with fear that we’ll have seizures.  Perhaps in expanding our support beyond our family of relatives, friends, and associates, we might grow.

NEXT UP: Be sure to check out the next post by Michael at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.