Welcome to the club
“I’m so sorry that you are a part of this club but we are grateful you are here.”
David Axelrod said to Miguel and me as we were wrapping up an emotional interview that would be shown during CURE Epilepsy’s annual Chicago benefit. It was 2017 and the first time I had heard someone refer to the epilepsy community as ‘the club’. Adelaide had only been diagnosed with epilepsy less than a year before and our foray into the larger community was just beginning. We were feeling pretty isolated and had no idea how expansive and indiscriminate the membership directory was.
As time went on and I not only accepted our membership, but grew into the advocate I am today, I began to use a version of David’s words with others:
“I’m so sorry that you are a part of this club but please know that you are in incredible company.”
I figured the sense of this club, of belonging, of community had brought me a sense of peace so, hopefully, it could do the same for others.
Of course, those of us card-carrying epilepsy club members often have wallets overflowing with our other club ID cards: the tubie club, the hospital frequent flyer club, the keto club, the caregiver club, and on and on. If it has an awareness day, week, or month, it has a club. Then, of course, I added the worst club of all - the bereaved parent club. No membership card needed, instead they just brand your heart and send you on your way.
With admittance to the bereaved parent club, my active status in all my clubs associated with Adelaide’s conditions and care were revoked. At first I thought I’d lost these communities along with Adelaide. I certainly didn’t want those membership cards when they were handed to me, but eventually they became precious, sometimes even a source of pride. What I understand now is that even though my physical tether to these clubs has been set free, I remain a member. In fact, my membership wasn’t actually revoked - it was simply upgraded to legacy status.
Thinking about these communities as different clubs, like ones I might have voluntarily joined in high school has helped me find balance among them, especially those in which I will always have history, but am no longer an active member. This club concept isn’t just limited to those which I joined with Adelaide - clubs can encompass our entire lives: my time as a hospitality professional, an actress, a blogger, a mom to a neuro-typical child, a soon-to-be adoptive mother, a born and bred Midwesterner to an East coast transplant.
In the craziest Venn diagram you have ever imagined, each of these clubs may only overlap with a couple others but, in the end, they all come together to form me.
After reading one of my blogs from a couple weeks ago, my high school speech coach, Mr. P, who remains a very dear friend, reached out to me and told me about a “lateral journey” my blog had taken him on to a musical from the 1970’s called “The Me Nobody Knows”. Which then got him thinking about all the versions of ourselves and how the version of him that I know, “without, maybe, knowing it…is unique” because it is different than the Mr. P, or in this case, Dad, that his daughter knows, “and, boy! Is it ever not the me that Clyde, my poker buddy knows.” Though, for the record, I would LOVE to know the Mr. P that Clyde knows :).
It is simply crazy to think that there are all these me’s running around out there in other people’s heads that I am completely unaware of. All these me’s that people know through my membership to whatever club connects us - and whether I like their perceived version of me or not, it is their lived truth and all of these me’s somehow come together to make the me in the middle of that wildly complicated Venn diagram. And that me is perhaps the me that only I know - which I think can often be the source of a lot of our loneliness.
We can embrace our various communities, commiserate and seek advice but at the end of the day when we leave our coffee date, or close out of social media, or when whatever manifestation of our club’s membership meeting comes to an end - we’re left with just ourselves, the me that nobody knows.
The trick, I think, is learning to accept that version of ourselves. To acknowledge the symbiotic relationship between our selves and our clubs. Because each of these clubs - whether I applied for membership or was unceremoniously selected - has molded me. They have connected me with amazing humans, provided me with life tools I may have never wanted, but that continue to be useful, and made a version of me that I never could have imagined but am pretty dang proud of.
My club memberships may change in status but will last forever. They are as much a part of me as the ladybug tattoo on my wrist - and, if I let them, can bring me just as much comfort.
