Those of us with systemic autoimmune arthritis often hear that we are “too young” for arthritis, though we know we are not. If we spoke openly about our health conditions, we would also probably hear frequently how we are “too young” to die. But the truth is that we’re not too young for that either.
In the past week I’ve seen several news stories about the death of 23-year old Sasha McHale, daughter of former Minnesota Timberwolves coach Tom McHale, from lupus-related complications. Then, just in the last few days, I found out that Laura, of the blog Still’s Life, has died of complications from Still’s disease (Juvenille Idiopathic Arthritis). I did not know Sasha, and I wasn’t close to Laura, though I knew her through the twitter #rheum community, so I don’t want to claim that I have any stake in grieving for these two women, except in the way that anyone must grieve for an individual whose life ends just as it should be beginning. And for that I do grieve, as I did for Simone Watson, an Atlanta college student who died from lupus complications just days before her graduation with a dual bachelors/masters degree last spring.
I find myself combing the news articles and memorial posts, trying to figure out what lies beneath the opaque phrase “complications from lupus” or “complications from autoimmune disease.” Did they know this was the end? Or did it come as a surprise to them, as it did to us? I wonder how hard I should be pushing myself, how much time I have left, whether pushing too hard—for my career, for my scholarship—means less time to be in this world that I love with the people I love. I wonder what it is I can offer in return, to make sense of such senseless loss. I’m not afraid of death, but I’m not ready to be done here. Not by far. And I can’t know, but I suspect Sasha, Simone, and Laura weren’t either.
Someone asked the Dalai Lama what surprises him most:
“Man, because he sacrifices his health in order to make money. Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future; he lives as if he is never going to die, and then he dies having never really lived.”
I was thinking today about how I loathe the thought of having to downgrade to “gentle yoga” after several years of a Bikram and power yoga practice. I’m not exactly known for the likelihood of my “go[ing] gentle” into anything. I want to do what’s best for my body, but it’s not always easy to accept its limitations. So on that note, I present a (rather famous) villanelle* by Dylan Thomas.
Do not go gentle into that good night
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
You can listen to Thomas read the poem over at the Academy of American Poets.
*The villanelle is, in my opinion, one of the hardest forms to do well in English because of its reliance on both repetition and rhyme. The form uses only two rhyme sounds (a & b) and has two refrain lines that use the first rhyme sound (a). See Elizabeth Bishop’s “One Art” for another beautiful example.
Hello blog, sorry I’ve been away. Life got in the way and suddenly it’s three weeks later with no updates. I was busy teaching while you were just lounging around the pool, I’m sure. Or whatever it is that blogs do when they’re not being attended by their creators.
I spent the last three weeks teaching in a program for gifted teens. It was both amazing and exhausting. And reminded me why I don’t teach middle school or high school during the rest of the year. Most teenage boys have so little impulse control it’s comical.
In some ways, it was good for me to keep busy. My uncle died suddenly of a heart attack a few weeks ago, so I’ve been doing a lot of thinking about living purposefully and not taking anything for granted. On the one hand, I think being chronically ill makes me more aware and more appreciative of everything that’s going on in my life, but there are some times when it just feels like I’m enduring my life until something changes. Granted, when it comes to my health, I don’t always have the power to change it, or the change will come slowly, if at all. (I’ve been through enough cognitive behavioral therapy to be convinced of the power of positive thinking, but there are limits to what the human body can do and feel in any given situation). What I need to avoid is taking that sort of “endurance” mentality and applying it to other things that are within my power to change. I don’t have to spend time with people I dislike, or who make me feel less-than. I don’t have to make and honor commitments that other people try to pressure me to make when my gut tells me “no.”
In other news, this relentless heat (and its accompanying $180 power bill) does not make me happy. I can’t remember the last day it didn’t hit the low 90s. While my arthritis tends to do better in the heat, nothing else does. Well, no chillblains either, but there’s plenty more to worry about. I’ve been coating myself in sunscreen every day before I leave the house, but even that doesn’t seem to be enough to keep me from reacting to casual sun exposure (driving to work, walking from one building to another). I have a lovely rash all over my chest and shoulders that looks like acne. I almost wish it were acne– at least then it might respond to something other than steroids.