So, in keeping with the primary lessons I’ve learned this year — that human relationships are far more important than any of us would ever think, and human life — even if it’s measured at a century-level — is far too short and unpredictable to delay gratitude, there is a group I’ve left out, usually out of respect for privacy, but I’ve come to realize that the youth cancer movement is now needed more than ever.
I wish I’d known the youth support group when I had my first brain tumor, or the second, and it’s only because I had to spend a year (or close to it) hanging around a hospital that I got to meet you guys, but it was critical that I did. I spent most of my life thinking that what cancer patients needed — particularly young cancer patients — was better care providers, or better funding, or better meds, but there’s something it needs, far more, with a fierce urgency.
It needs heroes.
I needed you guys 17 years ago, six years ago, and, in the year when I actually had real, honest-to-God cancer (brain tumor patients always get that line, “Well, thankfully it wasn’t malignant,” as if a spelunking expedition through the frontal lobes isn’t worthy of concern), it was beyond reassuring to know that I wasn’t alone, that others had gone through the abyss. When neuralgia kept me awake a 2 am, I thought of you guys (in addition to the great line from Lawrence of Arabia, “The trick is not minding that it hurts.”), I’m not kidding.
We had a meeting the other evening and some new folks were talking about the depressing survival statistics; one of my online GBM support groups kept me going at various points because people would chime in, “17-year survivor, no recurrences or metastasis, yet.” You guys are the flesh-based version of that, and, even if no one else says it, you make a difference. Your mere presence has saved lives.
To quote you the immortal Neil Gaiman,”We need individual stories. Without individuals we see only numbers: a thousand dead, a hundred thousand dead, ‘casualties may rise to a million’. With individual stories, the statistics become people.” (Sarah, if you’re reading, ask Katie in the writing group about my favorite Neil Gaiman quote).
I thought — for over a decade — that the only way to pay my fortune (or misfortune, depending on how you look at it), when the better, easier (for me, anyway) way to do that would be just to show up, and swap stories. To tell people that there is light at the edge of the abyss, but you do have to trek through hell to get there.
I am heading back to Mother Dearest’s this weekend, and I will do my best to show up, again, but life is strange and turbulent, and you all deserve to know, if I don’t get the chance to say it again, in-person, thank you so, so much. I will write.
PS; in case the next group wants to know what a year of experimental infusions looks like, here I am in June-ish, halfway through:
We can all do it.