Living and Dying in Cyberspace

This week's editorial touches on a somber subject and there's a personal reason for that. This past week has been a tough one for me, with the deaths of two different family members. It made me stop and think a lot about life and how we live it today, and it also impressed upon me how the Internet has changed not just our lives, but also many of the little rituals surrounding our deaths.

The first to leave us was my cousin, Kim. She was only forty-seven years old, but she had been battling cancer for over a year, enduring chemo and radiation and fighting the disease as hard as she could. For a time, the treatments seemed to be working. She went back to work full time in January (as a teacher) and was able to finish the semester. Then, this summer, an MRI (another miracle of today's technology) came back with bad news: the tumors had spread and the doctors gave her only a few months to live. True to her spirit, she didn't give up. She traveled to noted cancer hospitals such as M.D. Anderson, which she was able to find out about through Internet resources, and pursued new treatments, but modern medicine failed her and she spent the last month in home hospice, surrounded by her loving family and many friends.

She also had friends she'd never even met, people who intimately understood what she was going through because they'd been through it themselves. Shortly after her diagnosis, she joined the CaringBridge web site (CaringBridge. Free Websites That Support And Connect Loved Ones During Critical Illness.). It's devoted to providing support for people with serious illnesses and to their families. Each patient can create a personalized web site with a blog/journal where you can share your thoughts and experiences and a guestbook where others can leave you messages. It's a way people can keep in touch with the outside world at a time when they may be too sick to get out and do things. And even during the last days, when the person is no longer able to participate, it can be a real lifeline for the family and other caretakers.

When my mom was in hospice care at the end of her life, people were always calling me to find out how she was doing. I appreciated the support and concern, but sometimes I didn't really feel like talking. Sometimes they called when I was trying to catch a little sleep. Sometimes I wasn't able to talk about what was happening without my voice breaking. Sometimes I got tired of repeating the same details over and over to different people. Today, there's another way to keep people informed. Almost everyone has an Internet connection. Kim's daughter took over the CaringBridge journal and posted almost every day about her condition. My other cousins and I checked the web site daily, rather than inundate them with phone calls. We still visited her, of course, but we live over an hour's drive away and weren't able to be there every day - but thanks to the web journal, we knew when she had a good day or a bad one, knew when they changed her meds and what the hospice workers were telling the family. We could leave words of encouragement for the family that they could read at their own convenience and messages of support for Kim that they could read to her.

When the end came, I found out through a private Facebook message from another family member just a short time after it happened, enabling me to call my aunt and offer any help I could give without waiting for her to think about calling me. My cousins and I used email to coordinate our plans to go to the funeral together, which is much easier than multiple phone calls when you're communicating between a large group of people. I remember when you had to go to a local florist shop to order flowers to be delivered to the funeral home, but now we can do it quickly and easily over the web. Some funeral homes also set up nice pages in tribute to each of the deceased, with photos that document their lives and guest books where friends can pay their virtual respects. The day after Kim's death, I got a message on Facebook that one of my other cousin's daughters was trying to get in touch with me by phone. I called her and found out that another of my cousins, Keith, had passed away following surgery that morning. Talk about a one-two punch. I was able to let my own friends know that I would be out of pocket for a few days, and why, via the various social networking sites I belong to. That was a lot easier than making calls or even sending individual email messages. And the responses that I got were so touching - it made the awful time a little easier, knowing so many people (many of whom I'd never met face to face) cared about me and my family.

Those people who say online friendships are not as "real" as the F2F kind must not have any online friends like mine. Many of the friendships that began through discussion lists or newsgroups (remember those?) or social networks have morphed into real world relationships over the years; I've gotten together with people from as far away as Australia, whom I originally "met" through a computer screen. Other long-time relationships have stayed confined to cyberspace but we're no less close. I have online friends I know more about than some of the people I've known in the "real world" for just as many years. I have groups of online friends I talk to almost every day.

Once upon a time, writers and others who worked at home ran the risk of becoming isolated but with the Internet, you're never alone if you don't want to be. No matter what time of the day or night it is, I can log onto Facebook and it's likely somebody I know will be online for me to talk to. There is something different, though, about relationships with people who live hundreds or thousands of miles away. In many cases, I've also met the spouses or other family members of my online friends - either in person or through the cyberworld. But I know many other folks through the Internet whose loved ones aren't involved in the online world. Sometimes one of these folks will just disappear from my Inbox or social networking posts for a while, and it always makes me a little anxious. What if that person is in the hospital or died suddenly? Will I ever even know for sure?

I've lost a few online friends to death over the years. The emotional impact was surprisingly strong, considering that I'd never gotten the opportunity to meet them in person. But then, maybe it's not surprising at all. After all, people cry over the deaths of celebrities and politicians who never knew they existed, and at least my relationships with my online friends went two ways.

I do think it's a good idea for those of us who have important online relationships to have a plan, in case something happens to us. My husband is involved in many of the same groups as I, and has met many of my online friends so I know he would notify people, and/or they would contact him, if something happened to me. I would hate to just disappear without a trace and leave people wondering what happened. That's another change the Internet has brought to our way of life - and of death.

What do you think? Are these changes beneficial? Or was the old way better, where such news was conveyed by phone or in person? Or does it matter? Have you ever had an online friend just drop out of sight, and wondered what happened? Have you lost any of your cyberfriends? Were you surprised at how much it affected you or did it seem less real than losing a "face to face" friend? In what other ways has the Internet changed things for the dying and their families, and the ways that the rest of us pay our respects? We invite you to discuss this topic