They’ve got my back

There is no medicine more powerful than empathy. There is true, unique healing that comes from the depth of understanding of someone who has been down the same path as you. Been there, done that, have the road scars to prove it. The commiseration of shared experiences is the foundation of empathy. “I know how you feel because I’ve been there, too.”

Sympathy – the expression of sorrow and sadness and compassion and imagining how it must feel – can be a wonderful embodiment of love and friendship, but it is not quite the same as empathy. “I am so sorry for your pain. I can only imagine how much this must hurt.” Sympathy is more at a distance while empathy is full in with sleeves rolled up and hands in the muck.

When I went through my back surgeries in 2000 and 2002, I had nobody to commiserate with. I was barely in my 30s; “spinal fusion” was not a road anyone I knew had even considered traveling, let alone heard of. Everyone in my world was more focused on career growth and stock options and day care pick-ups.

The internet existed back then but social media didn’t so there really wasn’t any way for me to meet folks empathetic to my back brace, walker, zipper scar, tingly feet, and terror that the pain might never go completely away.

The closest I got to an empathetic moment was one day in my surgeon’s waiting room. Another post-op patient and I were chatting, both standing up because sitting still hurt. While we were talking, my fellow commiserator accidentally dropped the cap to his water bottle. We both stood there and stared at it on the floor, wondering how we might pick it up (post-op bending was much frowned upon, assuming it was physically possible at all). He and I then looked at each other and burst into laughter – FINALLY someone understood how even the simplest tasks could be such impossible mountains!

A friendship never formed, sadly. The guy was nearly twice my age and I didn’t know how to have older friends back then. Instead, the cap stayed on the floor and we exchanged a knowing smile when one of us was called into the exam room.

Fast-forward to 2008. Rob and I had left California and were trying to figure out our new life in the trees and dampness of Woodhaven. Facebook was well on the scene and I had been part of its cyberfamily for about a year. I hadn’t had anymore back surgeries but it was clear the two I did have didn’t fix everything. Chronic pain, inability to work, and insomnia had taken up residence in our new home despite never having been invited.

One night, during one particularly long and frustrating cycle of no sleep, I meandered my way to a Facebook group for people who had had surgeries similar to mine. The group existed to chat and compare notes and commiserate. I immediately joined, thrilled to have finally found a tribe of “Me, too’s!”

There was obviously a pent-up demand because the group became quite large in just a matter of months. Then the people who started the group got all dramatic. Pain can do that. With the drama and the nearly 100 members, the group stopped being the haven of understanding that it had once been. Entertaining, yes. Helpful, not so much.

Another woman felt similarly and with a few emails and keystrokes, eight of us broke off and formed our own group. Yeah, maybe it was a little bit of “FINE! We’re just going to take our toys and go home!” but the eight of us had bonded and were growing weary of the silliness that the anonymity of social media can elicit in large groups.

So on July 4, 2010, we declared our independence and Got Your Back was formed. Secretly, privately, quietly. Don’t try bothering searching for it. If we’ve done our job right, you’ll never find it. Thank you for your barriers, Mark Zuckerberg!

Our tribal flag

A few more people were added over the next couple of years, bringing the total to 12. Well aware of how dramatically things changed with the large group before, we agreed as a group to cap it. No more members. People could leave but nobody else could join.

While again that might sound like playground neener neeners, it was really meant to protect the deep trust that was developing amongst this group of strangers with a common thread. We were starting to share some very personal thoughts and fears in those secret Facebook posts. Bringing in new people changed the dynamic and caused some of us to pull back a bit until we learned we could trust the newbie. While this happens in any group, it seems particularly tricky online. No voices, no tones, no body language. Just typed words and occasional photos to learn a person and her heart.

And so we have been 12 women sharing the experience of chronic back pain for almost five years. Yes, oddly without planning it, we are all women. The youngest is in her 20s, the oldest in her 60s. We are scattered all over the US and one is in Canada. Some are married, some have kids, some have grandkids. One has given birth during our time as a group and we all feel like honorary aunties to the adorable Ellie. Many of us have a deep faith in God, prompting me to wonder what the connection might be between a life of pain and a hope for and belief in something so much better down the road.

Over the five years, we have vented, whined, cried, celebrated, and rejoiced together. We have asked for advice and we have given advice. We have compared notes and we have compared MRIs. We have celebrated births and graduations and successful surgeries. We have bemoaned failed medications and insurance policies and scary trips to the ER. We have asked for prayers and we have prayed intensely. We have shared our lives. All at a distance.

So the trip to Hershey, Pennsylvania a few weeks ago wasn’t just to roll around in chocolate all weekend. Although that IS highly recommended and worth a return visit. The true purpose of the trip was to meet some of these dear friends in person for the first time. We had hoped to get as many of the 12 as possible to join in the gathering; unfortunately as life and pain would have it, just four of us were there. But wow, what a weekend.

I had already met one of the women (Joyce) in person several years ago when she had a family wedding to attend on the west coast. Since that first meeting, Joyce and I have become real friends, not just Facebook friends, despite the many miles between Washington and Virginia. So I knew that it was very possible that meeting Donna and Barb would be similarly easy and seamless and powerful.

But I have also watched enough episodes of “Catfish” to know that online personas and real life don’t always match. Not to mention, I am sure I am not the only person who has a blast chatting away on Facebook with someone only for it to feel all weird and awkward and almost forced when trying to continue the conversation face-to-face. Right? I’m not the only one?

So I was prepared for the awkward but hoping for the seamless when Rob and I first entered the Hershey Theater…our rendezvous with Donna and Barb.

Huge smiles, bigger hugs, and “YOU LOOK JUST LIKE YOUR PICTURES!” echoed off the marble in the theater’s lobby. Within moments, it was clear we were old friends, had been for years, and will be for years more. It was fantastic.

But not just that. The entire weekend was weirdly wonderful. We were four women and three husbands meeting for the first time but feeling like we had been sharing lives and stories for years. Some conversations started new, others picked up where they had left off on Facebook just days before.

It was also strange to be in a group with that empathy thing going on all over the place. We are all so used to wearing a mask and plugging along and dealing with the pain later. And so we did. Except that we all know what that looks like so we watched out for each other and cared for each other and changed plans for each other. We had each other’s back.

We agreed how refreshing and unfamiliar it was not to have to explain or make polite excuses for not doing an activity or wanting to sit in a particular chair. A simple “I’m done” or “I can’t” was all that was needed. Instead of explanations, there was understanding. Instead of disappointment, there was commiseration. Instead of distance, the bonds of friendship grew closer.

If you read my travelblog, you know we left very little chocolate unsampled in Hershey. The four of us agreed that we had a blast …and probably did a little too much. All of us were in deep recovery mode for days after, none regretting the bonus pain one bit.

We also agreed that this Got Your Back Get Together was the first but not the last. I already feel closer to Barb and Donna simply for having hugged them and heard their voices. I want to feel that same surge of bonding with Sharon and Lisa and Sara and the rest. So while the next gathering might be a little more low-keyed…I’m thinking a spa weekend sounds fun…I know for certain that it will be a gathering of old friends simply meeting for the first time.

Despite appearances, we did not coordinate our outfits.  Freaky, huh?