My family is usually private with a capital P. We keep to ourselves and we’re just not the type to advertise our personal lives. But when my dad was diagnosed with cancer last year—a shocking surprise and initially a very bleak prognosis—we knew we couldn’t stay so private anymore. To care for him (and ourselves) we’d need support.
This was such a learning experience for us—how would we find a comfortable way of letting people in? How would we keep everyone informed?
When we were at our most overwhelmed, my wonderful (and computer savvy) aunt stepped in with a creative solution—she got us set up on Tyze, a totally private and secure online site where we could keep everything and everyone organized and informed. Tyze became a hub where we could reach out, get practical support for dad, and comfortably share a little bit of what was going on in all of our lives. It brought several different generations of our family together in one place. It was also the catalyst that helped us see all of the love and support that surrounds us.
A Comfortable Way to Connect
When my aunt first set up our Tyze site, we decided we’d just use it as an experiment. We figured, hey, why don’t we just try it? Thank goodness my aunt was the one who took the reins in the beginning part to get us set up, because we wouldn’t have been able to manage something new at the time. Actually, it’s ironic that it was just too overwhelming to think about setting up a network at the very minute when you need it the most. Now I always tell people, you know what, if you’re witnessing someone you love deal with a challenge, go ahead and set them up a network—it only takes you a few minutes and it’s a huge gift.
Our network has about 30 people on it—my grandma, our immediate family, extended family living out of town, and some close friends. At first we used it as a space to keep people updated about appointments and chemo and things like that. For example dad would have chemo, then mom would put up a post to say it went fine. Then many people on the network would show their support by adding comments and messages. Essentially, Tyze is a tidy place we keep everything organized. It’s a huge time saver.
In the beginning the network was all about dad, but now we also use it for all kinds of stories and photos and for staying connected in general. Really, dad wanted to be keeping up to date with the happenings in everyone else’s lives, so we just started encouraging everyone to share. For example, I posted a story about a snowboarding trip and my brother’s girlfriend posted photos of a surprise birthday party. And lots of people on the network seem to be having babies right now, so every time they have a baby we get to see those pictures.
My dad has surprised us by being a really active user of the Tyze site. He’s not normally a computer guy so in the beginning I didn’t expect he’d be on there much at all. But we bought him an iPad right around Christmas and now he’s on there, like, non-stop. He just sits there and flips through all the pictures people have put up and he really enjoys it.
“Tyze”ing it all Together
In retrospect, I think that we didn’t realize the support we really had when this crisis first happened. But now, with Tyze, we’ve been able to open up the door and embrace the idea of a network.
The powerful response we’ve gotten back from our group is very affirming. In a way it’s been like connecting the dots as far as all the important, trusted people we have out there. When you put them all together and scroll down that list—when you really realize how many people you could actually ask for help if you needed it—it’s a safety net. For my dad, it’s comforting to see how many people are there for us.
Today, my dad is in remission. He’s clearly exceeded the doctor’s expectations. Now that his condition stabilized, life has kept trucking on, except now it’s filled with chemo appointments, lab tests and lots of concern and support from friends and family.
My advice to people thinking of starting up a Tyze network is, first, do it! Second, start small, learn as you go. Once a few people understand the concept and start posting stories and photos, it gets really easy to orient new people. Seeing the support around you is comforting—contributing and caring is a contagious feeling. For me, it’s all about paying it forward and trying to make things better for other people.
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