“Success depends on the support of other people. The only hurdle between you and what you want to be is the support of other people.” – David Joseph Schwartz
Shortly after Dave was diagnosed, and I had moved to California, he needed to go on a business trip. It was a driveable distance from our home. He was somewhere between apprehensive and terrified about making the trip. Kind of like someone who is elderly gets when they just are too uncomfortable with the idea of “leaving home” to visit family or friends.
I suggested that I go with him. He considered my offer and decided that he would give it a go. I was thrilled. If you have been reading my blog for a while, or my Caring Bridge site before, you know that my job, as I saw it, was to help Dave regain some confidence in himself to get through all of this in one piece and maintain some resemblance of who he was before. I knew he could do it, it was my job to get him to believe in himself and to pick him up if he fell. But to do it in a way that was indeed supportive and gentle. It needed to be as much his decision as was possible. Since he wasn’t outright saying no to the idea and that he mentioned it to me instead of hiding it from me, was hopeful. He wanted to go, he was ready, he just needed a little encouragement, and also he was probably testing my reaction to the idea, did I think it was possible. Understandable. Plans were made for me to join him on this 3 day trip to the San Jose area. It was at a lovely location, an old estate, with botanical gardens on the grounds. I was looking forward to getting out of the house.
While Dave was in meetings I perched myself in the garden with my laptop and continued my Myeloma Research and surfing the web for some sort of “connection”. Somehow I found myself on a social website, for cancer patients. I ventured into a chat room there and into a conversation with someone who was battling cancer for some time. She was gracious, kind, and reaching out to me, welcoming me into the conversation. As it turned out, this little website was in the UK, only about 3,000 members (it has since merged with a bigger site and doesn’t have quite the same intimate feel, but it has some other benefits in the changes). I put up a profile, began to respond to blogs and forums and every day I ventured into the chat room. I found myself drawn to these folks and being bolstered and supported. It felt remarkably good. Given the time difference it was amazing that I would find people awake, unable to sleep in the chat room in the wee hours of the UK clock. I had my “midnight” friends I could almost always find online and then I had my daytime friends. It became a ritual for me. For a very long time, it was my mainstay of support. Where I could talk to people, patients and caregivers, dealing with cancer. It was enriching and I learned a lot, about myself, and about what Dave was going through.
There are a lot of sites out there. I’m sorry I can’t direct you to any. I searched general terms and couldn’t come up with any of the ones I know about, like MacMillan, CancerCompass, Acor. And I can’t remember how I “found” them. But as you surf the web, look for them. Try them on for size. They are all very different in how they feel, their ease of use, etc. If you are on the computer and like me, you don’t have a support group nearby, I urge you to give it a try. I made many friends there and even found another cancer caregiver on the UK site who lives near me here in California and even has our same doctor – small world! We met for dinner and it was fabulous. Many of the friends I made are now friends with me on FaceBook. If I ever get over to the UK, I will be meeting up with several of them.
While there is great value in an in person connection, sometimes its just not very doable. Sometimes they meet only once a month or on a Wednesday and its 2 am on a Sunday. The internet never sleeps. Many of these sites are worldwide. You will meet people from Australia, Canada, and many other places around the world. Its fascinating. The song, “Margaritaville” comes to mind. Its “that time” somewhere. So while it may be 2 am for you, its 2 pm for someone else and you most likely will always find someone to chat with about most anything.
Some basic tips for those of you “concerned” about opening yourself up on a website. Pick a screen name that you are comfortable with, most don’t use their real name. Most sites will protect your email address and only need them to identify you as you login or send you administrative emails from the site, which are rare. If someone wants to contact you, they do it in a self contained way on the site. If you get some funky emails from people selling you snake oil or something else, most sites have a way for you to report it and they appreciate it very much when you take the time to let them know. They will block that user off the site as a spammer. It doesn’t happen a lot, but it does from time to time.
What would be really nice with this post is if some of you would put your favorite social networking sites in the comment section. Who knows, maybe someone venturing here could really use the connection.
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