Continuing from where we left off in our last post, I’ve had to do a lot of thinking recently about life, in general, and in terms of how I’m going to live myself. Of course, it is impossible to plan anything out very far, but 1 compiled some general principles, or observe patterns.
The most important thing to remember is that none of this is a competition. (Sorry, Olivia.) A consistent pro-life ethic means all humans are equally valuable and beloved. You’re not more valuable if you are able-bodied, or if you are profoundly disabled. If a perfectly healthy person exists and should happen to be reading this blog post by some chance, you don’t have to feel bad because you have no struggles worthy of beautifying. For one thing, life is hard for everyone, and everyone has struggles, whether those are physical, mental, or spiritual. I mean, look at the state of the world right now. Look at the state of the world in the year 600. Life is pain, highness, and anyone who tells you otherwise is selling something — that goes for everyone, whatever the precise nature of that pain. For another, illness or disability or grief can come upon anyone at any moment: your health is largely out of your control. We don’t get to pick and choose our genetics (and shouldn’t) and there’s only so much we can do for our immune systems, and anyone can fall and splinter a leg, and so on and so on.
Another supremely important thing to remember is the goodness of the body. You won’t find Manichaeism here any more than you’ll find Pelagianism: God created the material world good. Anything bad in it, like atomic bombs, is the result of human sin, and not a part of its essential nature. The human body is good, and we know it will be resurrected and live eternally. It is possible that the animal and vegetable worlds will be renewed as well, since the new heavens and new earth are spoken about broadly enough to allow for that interpretation. (That is kind of another subject, although one about which I have many thoughts.) So it is highly theologically inaccurate to speak of disabled bodies as bad. Our experience of disability is hardly ever fun, but that does not make our existence or the existence of our bodies a bad thing. When being an icon of God is one of the most fundamental facts of your existence, anything bad about you comes from what you choose to do, not from what you are. (I’ll get more into this idea in the third part of this impromptu series; also, I highly recommend Heather Lanier’s Raising A Rare Girl for an excellent presentation of a consistent pro-life ethic applied to this idea. If you take away only one thing from all this, it should be that.)
Another thing that follows from the basic pro-life belief outlined above, that this is not a competition for worth
[I had to stop writing here for a moment, because although I was sitting on the couch with the cat on my lap and both of us in positions we regularly adopt when snuggling like this, one of the large muscles in the bottom of my left foot, toward the inside edge, sort of running along the length of the arch right at the side of the foot there, chose that moment to painfully and tangibly move out of place. As you can imagine, this is a very absorbing experience, as it takes a great deal of concentration to move the muscle back into place again, because moving out of place has gotten it all tightened up and stressed, not to mention how much it hurts. I’ve done this on occasion before, but not for a long time, and it just now occurs to me that this too may find its explanation in my new diagnosis. It wasn’t too long, maybe two minutes by the clock from beginning to end, and now my foot and leg are only a little bit sore and I can take up my train of thought again. This has been A Moment (albeit, this exact sort, a rather rare one) In Life and the Writing Process with me.]
Anyway, none of this is a competition for worth. Similarly, none of this is a competition for who is worst off. Other people have it worse than me, of which I am well aware, but this does not mean my struggles matter less because they, for instance, affect my life less. For all but one of the suffering people in the world, it is true that someone else has it worse. That does not mean that only one person in the entire world is allowed to struggle, seek medical attention, have a bad day, or anything else. That would be clearly ridiculous. In the same vein, the fact that I appear healthy to the untrained eye, except during the rare moments when I am, you know, losing consciousness, does not mean that my struggles are made up. Surely, in this enlightened scientific age, we know that things can exist even when we don’t see them. Invisible illnesses and disabilities are just as real as the ones with consequences visible to outsiders: this does not mean that the visible ones are worse, or that being invisibly disabled means you are less disabled. There is actually something of a consensus on this in the disabled community.
And in a world after the fall, no one is too young to be sick or injured, because that is not how the effects of the curse operate. Especially when we consider genetic things, which have been part of the people they affect literally since the moment of their conception, even if they became visible to the general public only many years later. However, these wrong ideas have spread even into the Church at large, and though I haven’t personally had to deal with many of them so far, I would like to say just one thing in their general direction. The consequence of these ideas is the same thing: your struggles are tolerated only when you have an official diagnosis. It serves as a permission slip, in this way. However, the struggles predate the diagnosis. I struggled just as much in the years before I met my wonderful doctor, when no one was listening to me, as I do now — if I had not already been struggling, I would not have gotten my diagnosis. My condition is the same now as it was before. The only difference is that now I have an official word from a medical professional. Requiring a diagnosis before we believe that a person is struggling, in whatever way, shuts out the many many people who are in pain without knowing why, often 4 years before getting any answers, and only makes things harder for them. Surely we know now that everyone struggles in some way. Surely the solution is to be kind to everyone, and to give people the benefit of the doubt, and to try to help people and not be a problem on top of problems to them, rather than to guard a hoard of possible assistance which we judge is to be given out only to those with official medical recognition.
When I was a child, growing up undiagnosed autistic, I had a lot of meltdowns. We didn’t know what my sensory needs were at the time, and I was continually being forced into situations where I would go past my limits and then crash. Once I learned about autism, I began to assert myself and live within my limits, defending as it were the edges of my territory. People began to see that I had a low tolerance for certain things, like crowds. To them it looked as if a perfectly normal kid had grown up and suddenly developed an allergic reaction to large loud groups of people. I had always had limited noise tolerance: the only difference was that now it was visible. Similarly, now, I know that when people say to push through pain and discomfort to grow your strength, they don’t mean the kind of pain I feel after pushing myself through a physically grueling work day. Now, I have permission, in a sense, to defend the edges of my territory when it comes to what I can do in a work day. From the outside, it looks as if a fairly normal, although somewhat weak, person had suddenly lost a great deal of ability to do stuff. I can testify that from the inside it mostly looks like the same person as before, who now doesn’t push herself into painful situations, and so spends less time recovering from pushing herself too hard and injuring herself. People see the work shifts I miss; they don’t see me spending less time lying down on the floor first thing after coming home from work, or hobbling around on aching legs that evening and the next morning.
I do say “mostly”, because some of the issues which have been gradually increasing over the last ten years began to get dramatically worse last fall (stress may have had something to do with it), and the whole lactose-intolerance thing is new, and taking quite a bit of adjusting to. Otherwise, for now, things continue fairly levelly.
Another factor in the visibility of all this is the number of things I have to divide my energy out to. When I was in school (an example I pick because it’s the only comparably ‘public’ stage of my life so far), which meant long days and a lot of driving and so many people, orchestra days being especially draining (if also rewarding), I could afford to pour all my energy into school-related stuff. I didn’t have many responsibilities at home, as it’s hard to do those when you’re not there, and until my last semester, I wasn’t working at a paid job off-campus either. Now, by contrast, I have two and a half paid jobs, no one does the household work besides me unless I call someone in to help, I need to do everything every day to take care of my body and mind, and every once in a while I like to write or sit down and sew.
Suppose I had a full gallon jug of milk labeled Energy. (I think about milk a lot these days.) Suppose I had a one-gallon jug labeled School. I could easily pour all my milk from one jug into the other and adequately fill it. Suppose I have the same full gallon jug of milk labeled Energy, only now I have a one-gallon jug labeled Paid Work, a one-gallon jug labeled House Work, a one-gallon jug labeled “care for oneself and the cat”, a one-gallon jug labeled Church, and a one-gallon jug labeled Life Stuff. I can’t fill all of these jugs adequately. I can fill all of them some of the way, or a few of them most of the way and neglect the others and hope for the best — maybe I can get to those later when my original jug is refilled — but now I have more demands on my energy, and I don’t have more energy with which to answer them. Indeed, at times, I have less. The church split especially took it out of me, and then being so sick this Spring and taking a long time to bounce back from that — if the phrase “bounce back” can even be used of anything I do. At times I have poured all my energy into paid work and left mere drops for taking care of myself and the cat, and had nothing left over for the others. At times I have given less to paid work, and people notice then because it’s public and visible, and I’ve been able to catch up on filling the housework or the care of the body jugs. This too will play into how visible a person’s struggles are at a given time.
One note to my currently-abled readers: I’m sure it’s very fun and easy to have a body and a mind that do what you want them to do without breaking down over the littlest things. If you are one of those people, and I’m sure you have your own struggles because life is hard for everyone, remember to enjoy your working body and mind. You haven’t always been able to look after yourself, and if you have the good fortune to get old you will lose that ability, which need not be something to be afraid of if you have good people to take care of you. You matter! Also, have fun. Enjoy rock climbing or running down hills without having to worry about your trick ankle or your trick knee or your trick ribs or — I mean, enjoy being able to stand up whenever you like, at whatever speed you like, without getting dizzy (though honestly, is it possible for anyone to be so healthy?).
What I get is the fun of being a living (if not exactly walking) memento mori. I know some of my readers are familiar with the hymn Remember O Thou Man (and its beautiful tune), and most of you will have at least a passing acquaintance with the fact that we are all dust, and to dust we will return. There are old tombstones that say something to the effect of “Don’t laugh, you who read this today, for as you are now, I once was, and as I am now, you will be”. It’s very important to remember these things: that we will die, and that we are not dead yet. (A host of Chesterton quotes rushes into the forefront of my mind at this thought, and you should consider yourselves lucky that I didn’t go and hunt up all of them to post here.) Read Manalive, remember that you are made of dust, a material not known for its durability, and think about how you will live when confronted with the limitations I have (if only through old age), while you can.
A final thought, for now. I have been slowly losing things: Milk, yogurt, cheese, butter, eggs; the ability to type for hours without taking a break, just letting the words flow; the ability to mop a floor without pain; some days, the ability to wear clothes without them hurting me (I came thisclose to not making it to work last Thursday because of this exact thing). Last year one of the things I was able to consistently take joy in was walking to church, which is about half a mile from where I live. I’m looking at the prospect of losing that too. I’m sure there are other things I’m forgetting right now, some of them because I’m now completely adjusted to their absence, but the thought of losing which might shock my abled readers. Some things I have simply never had.
I don’t entirely know why, in spiritual terms, God is asking for these particular things from me, why I’m having to practice giving them each to him as a free sacrifice. It’s really boring to be in pain for a long time. But for some reason, God decided structural integrity wasn’t a thing my body needed, and that I could have good bones and good skin with everything else in between them a wreck, so here we are.
To be continued in our next, which will be all about the best thing (in my opinion) to come out of this whole. . . I don’t even know what to call All This. As before, I did this through voice typing, so you might find occasional instances of the wrong word or something.