I have high IQ intelligence, which people quickly realize when they speak with me or read what I’ve written. So I think it’s often hard for them to wrap their minds around the fact that I also face cognitive disability.
When people hear the phrase “cognitive disability”, they tend to think of developmental disabilities or hallucinations. So for those of us who face cognitive disability despite normal or high intelligence and no hallucinations, we are often treated as if we could not possibly have a cognitive disability.
If you fade out as the day goes on, experience periodic mental confusion, periodic rushed thoughts, etc – most people aren’t looking for that, it hasn’t even occurred to them before as something that can happen. We often call it ‘brain fog’ amongst ourselves, but it actually has a very scientific basis and can be described scientifically. Pre-syncope, hypovolemia, cerebral blood velocity instability, postural tachycardia – outsiders usually haven’t considered that those cause cognitive limitations, and even don’t know that the kind of cognitive limitations they cause exist.
Imagine writing an essay in each of these situations:
– You just crossed the finish line of a marathon.
– You just lost 1/3 of your blood.
– You’re about to faint.
– You’re in the middle of a flu.
– You’re a passenger in an economy car driving down a cobblestone road.
– You’re in the process of running a marathon.
– You just finished running a marathon while having the flu, lost 1/3 of your blood, are riding in an economy car driving down a cobblestone street, and are about to faint.
– You just lost 1/3 of your blood, have the flu, and are sprinting. (POTS in the second half of the day.)
– You just lost 1/3 of your blood and are about to faint. (NCS)
– You just lost 1/3 of your blood and are sprinting. (POTS)
These examples aren’t simply allegorical – in these situations your body would be in the same physiological state as a dysautonomia patient who is doing non-strenuous activity – for instance, sitting down. So you would know how we really feel. Since dysautonomia is instability of our homeostatic systems, what is going on in our body is changing all the time, so we likely experience the feeling of several of the above situations in the same day.
This is me at a coffee shop working on paperwork: You just lost 1/3 of your blood and are about to faint.
This is me at the drug store counter: You just lost 1/3 of your blood, are sprinting, and are starting to faint.
This is me lying down at home after going to a coffee shop to work on paperwork, then the drug store, then am so miserable I drove home, total of three hours out of the house: You just finished running a marathon while having the flu, lost 1/3 of your blood, are riding in an economy car driving down a cobblestone street, and are about to faint.
As you can guess, recovery takes time and rest and is often incomplete.
And as you can probably also guess, it is hard to do even knowledge-work like writing while in this condition. Where ‘hard’ is an understatement. Sometimes your skills and abilities feel like they are locked inside you, and no matter how hard you try, you can’t break them out to the outside world. And you learn to make peace with this, even though you never stop trying. Other times, you are almost completely locked out of your brain and body and all you can do is watch the world and struggle to complete survival activities like drinking water and eating something.
I hope this post may give readers an idea of the kind of cognitive challenges dysautonomia patients face on a daily basis. We aren’t looking for pity. We’ve made peace with our conditions and are fighting on to contribute to the world and live a good life. We are just looking for understanding. Understanding makes the world a warmer place and removes barriers that might otherwise be placed there accidentally.
Kittens are people, just like us, just funny looking. They’re funny looking little boys. Of course, when we want another little boy to be our playmate, what do we need to do first? We need to make friends with them.
The little boy kittens speak a different language than you or me. Instead of talking with their voice, they talk with their bodies. You talk their language by the way you move and touch them.
The first thing a little boy kitten wonders when he meets a little boy much bigger then him, is whether that little boy is going to be nice to him, or fight with him or even eat him. The way to say ‘I’m safe and I’m going to be nice to you’ in kitten language is to move slowly.
Next, the kitten wants to know your name. But your name in kitten language is different than your name in human language. To let the kitten know your name, you hold your hand out, palm down. The kitten will come over to sniff it. You let it keep sniffing it until it has finished reading your name.
It’s also important to listen to what kitten little boys are saying. Because they speak with their bodies, you need to look at their bodies to see what they are saying. What are they doing with their ears? If they are back, they are scared. Remind them that you are going to be nice to them, by using the moving slowly language. What other ways can you tell what the kitten is feeling or thinking?
Some say that either Romney or Obama will be our next president, but at this moment in time there is still a feasible alternative. A write-in candidate with a sufficiently unifying platform could win in a landslide. And a sufficiently unifying platform exists. We still have a choice — and the ability to take it.
The statistics show that there is now a greater number of independents (38%) than Democrats (32%) or Republicans (24%) (Pew Research, 2012 June http://pewresearch.org/databank/dailynumber/?NumberID=1513) and those who do identify with their party are unhappy with that party’s choice for presidential candidate (Pew Research, 2012 June http://www.people-press.org/2012/06/04/partisan-polarization-surges-in-bush-obama-years/). Obama voters proclaim “at least he’s better than Romney” while Romney voters say “at least he’s not Obama”. Both candidates represent a small enough fraction of the people that allowing either to control the nation is ludicrous.
Voting third party is not an option either, as there is no unifying third party candidate on the ballot.
There is, however, a unifying presidential platform available, and a way to put such a president into office this election – if the people so choose.
Every Fourth of July we display our shared values when we join together to say, ‘We refuse to be exploited. This is a nation of the people, by the people, and for the people.’ This is an American value common to Tea Partiers and Occupiers, Libertarians, Republicans, Democrats, Socialists and Anarchists, the politically devout and the politically disenfranchised. We all want the same thing: and end to the use of the political system by the elite to exploitation the people.
The platform would be simple: The nation should be of the people, by the people, and for the people. This can be implemented by taking no other policy positions. This would mean leaving the nation’s legislation choices and declarations of war to the will of the people as actualized by Congress.
We would need to crowdsource the search for a candidate who is behind this platform, work together to get them registered as a write-in candidate in many states by the deadlines, and spread the word without fundraising or advertising, via internet or word of mouth. We would use our display of support before election day as a gauge for whether enough of us are committed by Nov 6, to determine how to cast our vote. (Imagine the Facebook group: “If 30 million people join this group by election day, I’m voting for candidate X.” Barak Obama has 29 million Facebook fans.)
This path would remove the impact of campaign fundraising and party jockeying from influencing presidential decisions. It would give us a candidate not insane enough to spend their lives in a highly visible political career grabbing for presidential power. It would give our nation policy decisions that we don’t have to vote for in a single package, like an assorted box of candies.
And this path is still feasible. With the power of the internet that fuelled Facebook and the Arab Spring, a peaceful revolution is possible this November. The power is in the hands of the people.