Things in Erin’s Head

At the end of February I received a few synchronicities. The common message in all of them was SHOW UP. Admittedly, sometimes I show up in the same way a cat peeks around the corner at the cat carrier you just hauled in from the garage. Curious, yet primed and ready to bolt. 

As I mentioned in my newsletter a few weeks ago, I’ve been very much in the mode of “F*ck Around and Find Out” and I decided to attend a virtual organ transplant support group to see how I’d fit in and what support I could offer to the community. In theory, each of these transplant recipients also has a caregiver or a caregiving team. “That’s where my PEOPLE are,” I told Jerry, both hands flung in the air with a sassy twist of the wrist, blatantly exposing my Sicilian heritage. 

I was the third person to log in, on time (of course I was). As the only new face in the group, I was offered the opportunity to give a brief introduction of myself and I was one of three caregivers in the Zoom meeting. For this particular gathering there was no special guest or speaker, and there was no agenda (okay, so I was a little twitchy about the free for all), and as more people logged on the group started chatting, which I expect is normal for most support groups. 

At some point, I’m guessing halfway through the 90 minute Zoom meeting, someone asked a question about medications. I’m not comfortable sharing their exact question, but I personally didn’t find it weird or out of line. 

Backing up just a SMIDGE – transplant recipients rely on a LOT of medications to survive. I think Jerry took twenty pills the day he left the hospital. Now I think he’s down to six prescriptions and some are for regular health maintenance, unrelated to his liver transplant. Transplant meds are highly individualized, there are many variants, and everyone has different side effects. They are lifetime drugs. I would like to believe that if you get as far as receiving a new organ you have kind of been schooled in this… but I know there are exceptions to every… ah-hem… “rule.” 

BUT (I swear when I’m in the middle of these scenarios I sit there wondering HOW I ended up there and wonder WHAT I’m supposed to be learning).

Someone in the group didn’t like the question. 

They didn’t like talking about medications (mainly for the reasons I mentioned above and added fear someone would make a change without talking to their medical team).

I completely understand the need, desire, or worry for wanting to share that concern.

However, it didn’t END with the statement. It didn’t END with a disclosure. It didn’t END by a moderator saying, “Yes we will (or no we won’t) continue with this topic.” A cyclical pattern developed where someone would try to answer the question, and the objector would object. Louder. More aggressively, because they seemingly were not getting their way. No one told them they didn’t have to participate if they didn’t like the direction the meeting was taking.

Eventually, another participant jumped in to counter the nay-sayer. As the energies escalated and voices raised, the yellow highlight surrounding the “speaker image” bounced back and forth violently and my brain began to shut down. All I could do was focus on not making really weird “What are y’all DOING,” faces (I am a terrible poker player <<First Name>>, my face will show you everything, every time). Another participant jumped in the mix and as people talked over one another, the yellow box hopped around even more sporadically, making my eyes dart across the screen in a seizure-inducing pace. 

I watched other people retreat from the meeting, leaving comments in the chat box, “Have a great evening!” and my screen would reorient to accommodate the absence of their image. 

I don’t know why I stayed. More than anything it was likely my freeze response to the arguing. Granted it was a much milder level of disassociation than when I had jury duty last year… (I have yet to share that whole experience with you guys – but it was reminiscent of the movie “12 Angry Men” complete with people having to be held back from pummeling one another #trauma).

As we reached the 90 minute mark, there was no indication that the “convincing” was winding down, and I excused myself with a few friendly keystrokes, a smile, and I firmly hit that red “LEAVE MEETING” button.

I laid awake for quite a while that night wondering what on Earth had happened and what it really meant for ME.

First, I decided I’m going to go back and try again. I know speakers are planned for future meetings and in my heart, I believe this was an anomaly (good Lord I hope so!). I also feel like I was witness to this particular shit show for a reason. 

And here it is…

My book. My message for the world. It was designed for people who don’t go to support groups. Not because support groups are bad – oh contrary! Support groups are invaluable tools for so many communities. But they aren’t for everyone. 

I never once stepped foot in a caregiver support group.

Why?

I could not hold space for anyone else. 

I was not comfortable asking for help.

If I was tired and worried and scared and had been in the meeting I had just experienced? I would have felt judged and shamed. 

Deep in my caregiving mode my patience was limited because I was tired, not eating properly, and terrified. 

Just because I was doing it privately didn’t mean I didn’t have all of the same feelings and concerns that any other caregiver has. I still felt alone. I was still afraid. I was still feeling guilty. I was sad. And there were no other resources for me (the beautiful caregiving books telling me I’m an angel from heaven… those didn’t fit me either). That’s why I was called to write my book. I created a resource for the people who need to cocoon in their little worlds to care for their loved one. Something to let them know they aren’t the only one who loses their car in the hospital parking lot every time they visit. Something to let them know that there’s at least one other person in the Universe who is TERRIFIED by the life or death situation a pill box presents. Something to offer them helpful hints to make it through the days, to help soften the journey.

Something to let them know there is no right way. There is no wrong way. There’s only love. 

Because it’s all about love

P.S. I would L.O.V.E. to hear about support groups you have participated in that helped fill your cup. It can be any kind… medical, pain, al-anon, AA… What made them work for you? What would your dream support group look like? If you’ve never NEEDED a support group, what do you imagine a successful group to look like? I’m curious to know…

XOXO