I read this passage on Eva Markvoort’s Livejournal. Danielle linked to Eva on Twitter about a month ago, and I’ve been following her posts, as she nears the end of her lifelong battle with cystic fibrosis, ever since.
David Casarett, M.D. wrote the article, and in it he discusses how most cancer reporting in traditional media barely mentions death and pain.
He ends with this:
Nevertheless, the future isn’t entirely bleak, because we have access to a wide range of other sources of information that can offer a more honest view of what it’s like to live (and die) with serious illnesses like cancer. For instance, people are turning to social networking sites like Facebook to stay in touch with friends and family members who are struggling with serious illness. In fact, some sites like CarePages are designed specifically for this purpose. Those sites provide a wealth of facts and feelings and beliefs, raw and unfiltered.
And blogs, of course, are becoming a widely available source of genuine perspectives of real people. Honest, direct, and passionate, many blogs tell it like it is. Like the wonderful blog of Eva Markvoort, a young woman dying of Cystic Fibrosis, who shares what she learns from each day that she has left.
Eva’s blog, and many others like it, carry messages of hope, of course. In that regard they’re not so different than what we’d get from the New York Times. They tell us what we want to hear.
But they also don’t shy away from the realities that people with serious illnesses like cancer face every day. They tell us not only about the good days, but about the bad days, too. They’re not just about hope, but also about despair. That is, they’re telling us not just what we want to hear, but also what we need to hear.
Asthma is not like cancer or cystic fibrosis. It can be life-threatening, but usually it’s not. It is serious, for some more than others, and it is life-changing.
Blogging helps. It provides a connection and a shared experience for parents like me and for patients like my kid, but it also holds the chance to illuminate details and change perceptions of the chronic illness itself.
You are in such a better place than I am….right now, I’m still just mad, and need a safe place to be mad. My hope is that I can get past being mad, and move toward being a resource.
I do think it’s important to blog about things like asthma and other chronic (whether life threatening, or life ending, or not) so that there IS awareness. Keep up the good work.
Great post Amy. Thanks for bringing Dr Casaretts article to a broader audience. I hope Eva gets her miracle.
Thank you again for your site here. The information and resources are great, and, of course, the knowing that others are going through this too. Having a sick child is so very traumatic. I try to explain to people that just because she has been doing better, my anxiety does not go away. After her first pnuemonia, and just hearing the rattling in her chest when she was trying to breathe and all really will always stick in my mind. I do make all my parenting decisions now, etc., based on trying to prevent her from getting like that again. I know that her being on the higher dose of Flovent for about a year and a half now helps, but she was on this same dose with the 2nd, though significantly milder, pnuemonia (lower right lung only). Reading the experiences of others living with Asthma in their lives really helps me to keep (some of) my sanity.
You and AG do such a wonderful job! And, I have to say that reading your site has made me take my asthma more seriously and be more careful & proactive about it.
Thanks for posting this Amy.
Blogging does help, a lot. I’ve learned a lot and grown up a bit since starting my blog and I hope I’ve helped others in some small way.
I sometimes shy away from giving out the nitty gritty details though. Often I’ll write a post on a bad day or after a bad night that expresses my frustration, only to delete it because I don’t like the negative tone of it. I almost didn’t post the one yesterday about springtime running. That being said, maybe it would be better to express some of those things because there’s no doubt somebody out there can relate.
I know I’ve definitely learned a lot from blogging and the online community as a whole. None of the people in my life really get the whole “weird” asthma thing, but a lot of you guys do. This has been an awesome and crazy journey for me — thanks to everyone who’s shared in it!
If I had started this blog before 2007, when my kid was younger and during her uncontrolled years, it would’ve been a lot more negative and a “safe place to be mad,” as Sara mentions. I was angry and terrified for a long time. And we’re still feeling the repercussions of those early years, but our lives–and my kid’s health–are at least stable in a way they never used to be.
Asthma Mom is more of a resource and an awareness-raising tool now only because we’ve gone through the bad health years (and, I hope, the toughest ones) and come out okay on the other side, where I hope we’ll stay.
Both kinds of posting are crucial–people need to understand how bad asthma (and any other chronic condition) can get AND how much better it can get, too. Meaning the nitty gritty’s important (I’m looking at you, Danielle), and so is the hope.