So far, so good. This visit is rigorous, to be sure. But it’s turning out to be a really good visit. I’m grateful for that.
My parents are continuing on with their lives in the midst of the medical uncertainties. They’re just moving a little more slowly and they’re a bit distracted. No kidding. Who wouldn’t be, when the doctors are talking about the possibility of cancer, bone transplants, paralysis, etc. But they’re holding forth, abiding by their routine. We’re waiting for toxicology to get back about the biopsy they took on Wednesday. Early next week the results will come back, is what they’re saying.
That’s no excuse to deviate from the usual template of daily life.
I am very much my parents’ child.
I’m having some really good times with my Dad, though not for the best reasons. We’re looking at his MRI in my 3D Viewer, getting a better look at the mass in his back (it’s impressive, and nobody can believe he’s walking around and living his life, as he is), making sure he’s set up in the medical portal, so he can communicate with his doctor, and just talking through the options.
At times like this, I really am at my best. I can see all sides, I can’t help but think logically about things, I can weigh the pros and cons with a balanced view, and I can help him navigate the technical considerations. I can also talk to his best friend (who is a physician) about the situation, which is a help. And ironically, all the difficulties I have with doctors have taught me a few things about how to approach them, so one of my greatest weaknesses becomes one of my biggest strengths here.
I’m keeping steady with my morning routine – get up and exercise for the first half hour of the day. I don’t have my exercise bike here, but I can dance around and get my blood pumping. My Mom has dumbbells, too, which I can use for my light weight training. I just had my cereal and coffee, and I just took my vitamins. Now, I’ll eat my banana and hang out with my Mom, who just came downstairs.
Oh, funny thing — My Mom has been reading an article about autism in “Yes” magazine — about how we Auties and Aspies have been misdiagnosed and misunderstood for so long. It’s very much a recap of Steve Silberman’s book Neurotribes, and it’s a bit surreal to be discussing autism with my Mom, who is extremely spectrum-y but does not equate her behavior and difficulties with any neurodivergence, whatsoever.
On the one hand, she talks about how her sister is probably on the spectrum because she’s stubborn and socially inept… which is like the sky calling the sea blue. And not an hour later, she’s digging in her heels, resisting my suggestions at the grocery store, and commenting on the groceries that the lady in front her is buying at the check-out. Her sister is much more heavily impacted than my Mom is, so that probably obscures her own perception of herself. Plus, there’s so much pain and frustration buried deep in her experiences (raised by two very severe Aspies who had a hyper-religious austerity about them that really took a toll)… I’m sure it’s difficult for her to give much thought to all the painful aspects of her life that have been a direct result of being on the spectrum.
The thing is, too, there are so, so many really spectrum-y folks in this area, everybody blends right in. Roy Richard Grinker talks about autism as being a cultural construct, and to some extent, I agree. The differences which set autistic / Aspergers people apart from the neurotypical population are considered more pathological, the more divergent they are from the norms. But in a place like this, were everybody is — OMG — so spectrum-y, autism means something completely different. And the differences of the Aspie-fied population are really elevated and glorified, as a sign that they are “separate and apart” from “the world”.
So, in this context, being autistic is actually more neurotypical than in the mainstream. The tables are turned and it’s the mainstream that’s the freakish strain that needs to be overcome and reduced, mitigated and nullified by about the most autistic kinds of behavior and priorities you could ask for.
Seriously, it’s fascinating. And I wish that every autistic / Aspergers person who longs to be part of an autistic community, could spend a year in this place. First off, it would make them feel a lot less freakish. Second of all, it would stop them from longing for a world run by autistic folks. ‘Cause believe you me, it is NO easy task to get by in this world of rigid black-and-white thinking, where routine Rules All, you have to be on constant alert against the hyposensitive Aspies, who love to BE VERY, VERY LOUD AND OUTGOING AND SENSORY-SEEKING, and the only real option you have for keeping your hypersensitive self sane, is to completely ignore the constant onslaught(s) and just keep soldiering on, doing what needs to be done, because that’s what’s done.
Tamp it down and suck it up. Your reward will come in heaven.
Anyway, all in all, this is turning out to be a helpful trip. I’m able to contribute, I’m able to help my parents in important ways, and so far, I haven’t melted down. That will probably come when I get back home. We’ll see.
I just really want to do all I can, while I’m here. Help wherever possible, do the hard work of being steady and present, while also keeping my own safety in mind. I’m a heck of a lot tougher than I tend to think I am.
We all are.
So, keep on keepin’ on. And things will get handled.