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Dangerous Compassions

narcolepsy

Hello, I’ve been thinking a lot about narcolepsy, which is a disability that Ming has.  It’s probably his main disability.  Here is Ming doing narcolepsy skillfully.

narcolepsy

Yes, good job hitting the bed.  In the right direction, even.

what it is

Narcolepsy is about falling asleep when you’re not supposed to, and staying awake when you’re supposed to sleep.  There’s an aspect where the brain waves of the people with narcolepsy do something different, during sleep.  There are different types, including a kind with cataplexy, where a person collapses.

Ming can be counted on to fall asleep in meetings, waiting rooms, and non-drivers seats of vehicles.  Other hazards include being jerked around by mainstream medicine and insurance companies, having to jump through extreme hoops thanks to the (failed) war on drugs, and the hurtful things non-disabled people say about narcolepsy based on ignorance.

pain and energy level

But what I’ve been thinking about most lately is cognition, energy level, and all the results of narcolepsy that are more ancillary.  I’ve heard that narcolepsy doesn’t worsen with age.

But age means other health issues, like more pain.  Some plantar fascitis has been hurting Ming for more than a year.  Poor dear.  Pain is so exhausting, right?  Life is hard already, with all its injustices and struggles.  Pain does seem to make narcolepsy worse.

Energy level is something Ming can be most frustrated about.  He has tons of knowledge, skills, and ideas.  Yes–so much experience with permaculture, street medicine, organizing groups, relationships, helping others…  But that doesn’t mean Ming has the energy to use all he knows.

He sees the lives of friends who can work full-time, have many social connections, and do other fun projects on top of that, like tend big, gorgeous gardens.  Ming wishes he could do even a fraction of what he sees abled people do.  He feels the unfairness of that and despairs.

cognition

As for cognition, if you’re half in a dream, you might not think so great.  You might not save right either–your senses are giving you input that may or may not be accurate.  So if you do remember, you might be remembering nonsense!

Cognition is a big part of life.  And being smart is part of Ming’s identity.  To feel his cognition shifting can be scary.

Oh yeah, there are difficult emotions.  Sadness about being disabled and feeling left out–frustration with old symptoms and problems.  Fear about disability getting worse.

It’s a lot to do.  But life just keeps going.  He has to experience all this and feel his big feelings, at the same time as housing struggle, car problems, dental issues, helping me with my needs and work, paying bills, and trying to help the world and facilitate justice.

comments

When people hear Ming has narcolepsy and say, “Oh wow, you get to sleep all the time!  Must be nice!” that hurts.  No, it’s not nice, not to have a choice.

Comments like, “You just need to exercise more to tire yourself out, to sleep better at night,” or about how Ming should lose weight to have more energy are based on ignorance and non-disabled experience.  Kinda weird how people think they have the cure for something that scientists are working decades to cure…

It comes from a lack of empathy.  Empathy is an important intelligence that I wish more people had more of.  Most people can’t imagine lives besides their own.

Like when I was having a temperature regulation problem, and I was told, “The fan is right there.”  As if I didn’t notice every fan and wasn’t sitting in front of it.  It confuses me, how many people can be that incapable of considering the experiences of others.  I hear over and over again “We all need the same things,” and I feel sadder every time.

Maybe abled people all need the same things?

disability is real

Disability is real.  I wish narcolepsy was Ming’s only disability.  When we mention his learning disability, people invariably say, “Wow, you have a problem with language?  I don’t notice anything different…”  They seem to be doubting him, skeptical, like we might be making it up!

Of course, he’s working hard so people won’t notice his disabilities, right?  They have no idea how hard he’s working to communicate.  If you don’t notice Ming’s dysphasia, you should thank him for meeting you at your language style.  Please don’t invalidate his life.

I spend most of my energy in public working so you won’t see my autism or the ways that I’m crazy.   Forget the task at hand–I’m just trying to come off as a convincing person.  I might stim a bit, but I’m working hard to meet you more than halfway, with my social performance.  I’m making myself very uncomfortable so you won’t be. 

Please thank me for working hard to be comprehensible and easy for you.  Not tell me I’m making shit up.

not a doormat

If Ming just checked out with language and didn’t make the effort, he would become a doormat.  People would use him even more than they already do.  Language is crucial for expressing needs, self-advocacy, and anyone having a chance at knowing who he is.  Being without language is almost like being a non-entity.

Ming is exhausting himself to strive against his narcolepsy and language learning disability, to be a functional person in a world where there’s a narrow range of acceptable behavior.  We’re working on disability justice and creating a broader range of what’s acceptable, so more disabled people have the opportunity to show up and have our needs met.

By Laura-Marie

Good at listening to the noise until it makes sense.

7 replies on “narcolepsy”

Thanks for the info. I knew Ming had narcolepsy and that it affected his life significantly. More details are helpful. I do know something about plantar fasciitis and having that pain for more than a year. It wears you down. If you haven’t already tried it, a sleeping boot (night splint) cured it for me the last time I had it. Keeps the foot flexed at night so the tissues don’t contract and cause pain the next day. Also icing. Best regards.

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