I believe that the true measure of a disease is what it steals from you.
The flu steals your energy, your vitality, your very essence, along with the ability to breath through your nose without drowning in snot. Actually, it only borrows these things for a few days. But those few days leave you physically bankrupt, living in the equivalent of a cardboard box on Skid Row. Incidentally, I highly recommend getting a flu shot every year.
Adult-onset diabetes is a mountain bandit, making frequent and random raids before disappearing back into the night. Oops, there goes your ability to have that slice of pie without worrying about your glucose numbers. Oh no, there goes your feeling of health independence — having to visit the doctor isn’t just one of those good ideas, it is a necessity. A dependence. Wait, there’s diabetes again, making off with your eyesight. But you were careful to defend yourself! You took your meds, you watched your diet, you did everything possible to fend off the bandit! But even the best defenses can be broken by this most determined of desperadoes…
Cancer is an armed robber, Glock 9mm in hand, bursting in when you least expected. There is no subtlety to him. Give me your health, NOW motherfucker! Open the goddamn register and hand me your hair! Now give me your skin quality, your appetite, and ANY fucking hope you had of a pain-free existence. Give me all your energy and then get on the floor NOW! If you’re lucky, maybe I’ll let you keep your life! Or maybe I’ll take that too! Because I’m the motherfucker with the gun!
That is what’s relevant about illness. Not the numbers or the lab values, not the specific diagnosis. It’s all about what they take from you. And how.
And Asperger’s syndrome? It does none of that. It is not a robber or a bandit or even a burglar in the night. Asperger’s is more like a crooked accountant, skimming from you without your even knowing, doing your taxes with a smile and a wave and assuring you that everything is in proper order. Oh sure, you might realize you’re more poor than you should be at moments, especially compared to your classmates or coworkers, but you don’t even notice what’s going on until you look back at your financial statements over previous years and decades.
And then you’re like, Humm. Wasn’t there supposed to be more than one childhood friend on these records? That’s odd. And look at this: no groups of friends in high school. What’s up with that? And here, there’s a strange blank space where it says “Bonding experiences in college.” Must have been an oversight.
Ah, here is the page on “Mentors.” Um… is this page really torn? There’s nobody on it at all. Just my accountant’s signature at the bottom. With a smiley face.
Where is the page on “Study groups in med school?” I remember its subsections on “Laughing,” “Friendly Competition” and “Bonding.” I know that form is a requirement to graduate med school; what happened to mine? Must have gotten lost somewhere. Or “People you always sat next to in class.” That one is showing a zero. That can’t be right, can it? The section on “Weddings invited to” is not even filled in. Times You Were Best Man, In the Wedding Party, At the Bachelor Party… all are empty. Some kind of irregularity here.
And then you come to the entry for People on Facebook and Snapchat Who Actually Read, Like or Comment on your Posts. And you’re like, well I already know that one is a big fat zero. Must have been an oversight. But wait… is it really? Combined with everything else I just looked at… goddamn it, I’ve been robbed by that crooked accountant of mine, what was his name, Mr. Assburger, CPA!
Of course, the difference is, there is no police or IRS you can report Mr. Assburger to. You can wave around your records in people’s face and show them what Mr. Assburger took from you, but really, nobody cares. You have to work through your shit on your own.
And those things are just… stolen. Gone. And there is utterly no way to retrieve them. My friends that I should have had. My memories. My advisors or mentors in school or residency. My road trips. My parties. My reunions. My 2am textings. My idle evenings simply drinking beer with the bros. So many things were taken from me and I didn’t even realize it at the time until I go do something dumb and read someone else’s fond reminisces on their blog or their Facebook. The ones that get 50 likes from their close friends from high school and college that they still keep in touch with. And it rips me apart every single fucking time.
Now, a good embezzler knows his limits. You can sheer a sheep many times, but skin it only once. So Mr. Assburger let me have a few memories that I hold close, like a Raiders fan jealously enjoying the few wins he gets each season. But, as even a Raider fan must admit to himself when nobody else is around, it just isn’t enough.
The true measure of a disease is what it steals from you, and for Asperger’s, the horrifying truth is that you don’t even get to know what it took.