So let's pick up where we left off yesterday. What can the book "The Fault in our Stars", by John Green, teach us? Or, another way to look at it is--what can it teach us? Let me just focus on a few quotes:
1] Hazel, the main character of the book and its narrator, who is 15 and has cancer, reports that at her support group, most talk about "fighting" their cancer, in one way or another. At times she gets tired of this. But at other times she admits--that is some of way those with cancer do.
And sometimes that is what we with Moebius have to do. No, it is not exactly the same. Most of us are not fighting for our lives against a dangerous, metastasizing disease.
But still, we fight. It can be hard when your eyes don't work just like most others' do. It can be hard when your speech is different. It can be difficult when other people maybe are slow to accept you. But we do the best we can--to make ourselves understood, to be successful, to make lives for ourselves, despite the obstacles we face.
2] At one point, Hazel doesn't really want to go to her support group. But her mom convinces her to do so; and when she drops Hazel off, her mother calls out the window "Make friends!"
Two things struck me about this. First--this is really relevant to many of us in the Moebius community. Isn't it? How many of you Moebius moms and dads, who have kids with Moebius who are 8 years old, or 10, or 12, or are teenagers--how many of you want to, every day, urge your kids to make friends? Probably many of you do. Being shy is one of the hardest things Moebius children have to deal with. Making friends can be hard.
Okay but, now...second thing: Moebius moms and dads--DON'T SAY THIS. Or anything like it. Don't tell your kids this! Yes, I mean, of course--you want your kids to have friends. And yes, of course, you want to do what you can to encourage them to do so. But just telling them--"make friends!"--as if there's nothing to it, as if it's easy, as if all one needs is to be reminded to make friends, and then it will happen--just isn't helpful. Many of us with Moebius know we need to make friends. We know we need to get out there, and not be hermits. But it isn't easy. Don't suggest anything else.
3] Later: Hazel is frustrated about something, and so she lists several things that bother her. And one of the things she says is that she wished she did not have "lungs that suck at being lungs." (Her cancer was mainly in her lungs and affected them.)
In other words, she's kind of saying--ugh, she wished she didn't have cancer. Now this doesn't fit in with the image that we sometimes want to create of those who are suffering. We imagine them as people who are strong, courageous, who never complain and deal with everything perfectly. But of course, that's not true. People with cancer get frustrated, tired, angry, fearful, etc. And that is perfectly okay.
And you know what? It's perfectly okay for those with Moebius to let out their frustrations sometimes, too. It can be hard to have Moebius. At times it's no fun. And we all know why that is. There's nothing wrong with acknowledging that. With letting it out sometimes. As long as you don't allow it to keep you from having a life.
John Green wrote a great book. More lessons to come!
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