The Importance of Community

The other evening, I participated in my first Zoom meeting involving others who've survived a SCAD.

I honestly don't recall exactly how I found out about the group.  I received a welcome e-mail and some attachments, including a huge manual, which I printed off.  

As I thumbed through the material, I began to wonder what to expect at the meeting.  A lot of the information I received would have been news to me two years ago, but not so much now. I wondered if I was getting into a series of education sessions, complete with homework.

Now, don't get me wrong, there's definitely a place for patient education.  There are things I learned the hard way that I wish I hadn't.  And understanding any health condition is key to effective self-care and advocacy, for sure.  But that's not what I feel I really need right now.

While I've been part of other heart and stroke related groups, I've had next to no contact with anyone who has experienced a SCAD.  SCAD survivors are a different bunch - mostly female, with few or no risk factors typically associated with heart disease prior to the event.  

The saying "misery loves company" is not entirely without basis: no one likes to feel alone in their experience of disease, trauma, etc. And recently I have realized I am no different. In fact, I want to hear the stories of others who have faced SCAD. I want to see what is similar and different about their experiences.  I want to hear what they felt, what they fear, what they hope for.  I want to see their faces and hear their voices.  I want proof that I truly am not alone.

So with some trepidation, I readied myself for the virtual meeting.  I changed my sweater, drew on some eyebrows and put on a little lip gloss.  I checked my connection and signed in a little early, just to get used to how I needed to balance my tablet on my lap.

Soon the others connected.  Most had the video turned on, so I could look at their faces.

As the meeting began, it became clear that this would not be a formal education session.  The focus would be on sharing stories, answering questions and sharing information arising out of those stories.  I was thrilled! 

Two hours later, the meeting ended.  My mind was awash in all I had experienced.  While I was the last one to join the group and it was only the fourth meeting, it was clear that the rapport between participants was growing.  People listened and validated, they asked questions, they acknowledged challenges and successes.  

Most importantly, they understood; and not in an academic, "I-know-because-I-read-about-it" sort of way. They understood because they could ground the stories of others in their own lived experiences.

Even though the meeting ended at 9:30 p.m. and I am usually tired by that time of day, I was wired and already looking forward to the next one in two weeks' time.  For the first time since my SCAD in 2018, I no longer felt alone in my diagnosis.  I had been welcomed into a community of women who were eager to share and support.

While I may have long understand the importance of community, this week I am feeling just how much I need it.  

And I am profoundly grateful to have found it.