Over the past year, we have been asked this quite a bit. It always sort of throws me. We didn’t really start this group with a grand plan. We were really just a few people going through the same thing that wanted to get together and talk.
That first meeting was just supposed to be for lunch, but three hours later, we finally parted ways. We had so much to talk about and it just felt good to talk to people going through the same thing. I think we knew then that we were on to something. Back then we couldn’t find any groups for ICD patients. So, after finding each other in an online forum, we decided to start our own.
Since then we have found many great people, some other groups and have gotten lots of support from clinics and hospitals in the area. But still the question keeps coming up, what are we going to be? We discussed it at a few of our meeting with no real decision. But this weekend, at our December meeting, we finally came to agreement.
It was funny how it happened, I asked the question and we began discussing ideas, then suddenly we ended up in several small conversations all talking about what was coming up, what we were going through and what the device companies are developing. Sitting back listening to snippets here and there was amazing. Just then, another member spoke up and pointed out that this is what we want to be… simply a place that anyone can come and talk about anything related to having an ICD.
It sounds so simple, but it just isn’t out there. Other groups have hosted events and have guest speakers to give presentations and doctors will continue to want to talk to us but no one out there is just letting us talk to each other. Every conference and “support” meeting we have found outside of our own spent a good deal of time talking to us about what we are going through. At our meetings, we do quick introductions, get things started with a topic or two and by then, it is a chat session, sometimes to the whole group, sometimes to each other in small groups. But it never fails that we end up spending two or three hours just talking.
As a group, we will also continue to answer email questions or talk on the phone, learn everything we can about this technology and when asked we will visit anyone in the hospital who wants us there. The one thing we have that all the doctors and experts don’t have is real first hand knowledge of what it feels like to live with these devises and we are happy to share it… or just listen while a new member talks.
That is where our group stands out. We are just going to be a place people can come to talk.