Jesse's link to the Meta Watershed post below didn't include the truthiest part of this post for me.
I don't wear this on my public sleeve -- I'm all about being as normal as possible in spite of it all, goddamnit -- but I've got an MS-class neuroimmune disease that makes it impossible for me to exercise or hold down a full-time job. (And yes, for a former national champion varsity athlete, you could say that this is a pretty fair approximation of hell.)
The disease is well-managed -- I'm much better now than I was 10 years ago, or even two years ago -- but there is no hope that I will ever be better than I am right now. Maggie's post included a song that rang so true about the reality of what this is like that I wanted to point it out, and say Amen.
She gets it -- all the way down. Because it's her life, too.
Crip Ward Tango
You know how people always ask you
"How are you? How's it going? Wazzup?"
Sometimes it's just automatic
but most people do care to some extent
They keep track of your milestones
And the unspoken expectation
is that if you are sick or hurting
or -- god forbid -- disabled
You are going to get better, SOON
They turn off if you aren't better yet
They make suggestions for treatment
Something SOMEbody can do
so the next time they see you
your answer will be "I'm doing better"
But what if that's never gonna be true?
Are any of you ready to hear THAT reply?
I won't get better
I won't get better
This is the best I'll ever be
And when I’m older
Yeah when I'm older
Things may be even worse for me
People assume if you can't talk
Then you can't think
Or if you can't remember things fast
You must be STOOO- PID
They raise their voices
They talk to you like you are three years old
And if you get frustrated
For god's sake don't show it
'Cause nothing scares people more
Than a dummy on a rampage
Can you say "Frankenstein"?
I'm not retarded
I'm not retarded
Though that's an okay way to be
Why don't you listen
Shut up and listen
And find out what is the truth for me?
Faith healers
Now THERE's a freak show
We crips are supposed to be close to God
or at least to remind others of how
God moves in mysterious ways
And the New Agers, they think
If you can just identify and clear out
the blockages from childhood issues
Or maybe it's a past life thing
The cancer will disintegrate
Your vision will return
They know somebody in Sausalito
who regrew a crooked spine!
Mind over matter
Mind over matter
Your only problem's in your head
Have you tried Jesus
Think of his suffering
Stop being hopeless, get out of bed
But the biggest tragedy of all, the worst
thing that can happen to a family
is when a child is born crippled
Right?
Was it bad genes? Was it bad choices?
Is it a lesson sent from God?
Why oh why would God let this happen to an innocent child?
What kind of life can he expect to have?
No wife, no children, that's for sure
Some of their friends will whisper
"If they'd had amniocentesis, maybe
they could have stopped the pregnancy in time"
What do you say to things like that?
I am not dead yet
I am not dead yet
My only obstacles are YOU
I have a body
I have a sex life
It's time to alter your point of view
It's time to alter your point of view
It's both a blessing and a curse that my affliction is completely invisible. I can dress up and spend four days at Yearly Kos looking perfectly energetic and normal. It's an act, but I can pull it off -- for a while. What people don't see is the extensive morning and evening treatment rituals that keep me upright for that 12 or so hours; or the two weeks I'll spend in bed recovering -- in pain, minus the full use of my brain -- when I get back home.
(Still, I'll tell myself: getting this sweet, brief taste of my old life was worth it. It was soooo worth it.)
It's comforting to be able to pretend normalcy sometimes -- as long as I don't get so sucked in by my own illusion that I fail to keep up with the routines that make the act possible. It's wonderful to spend time with people and talk and think about something besides the endless minutia of treatments, doctors, theories, drugs. Maggie doesn't have that luxury.
But she does get the acknowledgment of her disability -- and for that, I envy her. People don't believe in what they can't see. And since my illness isn't visible -- even to the general run of doctors, unless they've seen my genetic tests and my screwy HPA labs and my brain scans -- I get frustrated trying to explain to people that, as normal as I may look, no, I can't go on the hike (much as I'd love to); and yes, if it were possible to simply exercise away those extra 40 pounds I've gained through these sedentary years by running 10 miles a week like I used to -- oh believe me, dear one, I would. But to do that would set me back years, and possibly even shorten my life.
That song gets to the heart of it all. I've gotten all the well-meaning advice about this doctor and that, the presuming suggestions, the patronizing lectures on what will fix me. (This is me we're talking about. You think there's a webpage on this disease anywhere in the world I haven't read? A book I don't own? A paper I haven't pulled off of PubMed and read for myself?)
And I've also heard that whole execreble, insulting song and dance about how I created this reality, and I can choose to uncreate it if I really want to. (And the kids being killed today in Iraq -- did they create that reality, too?)
And I've watched a stunningly big, bright future become dim and small, and done the work of making my peace with the blessings that I have -- a loving husband, amazing kids, a cozy and beautiful home, money enough for good care, and access to the best doctors in the world. Not to mention my trusty MacBook Pro, through which I find friends and graduate degrees and meaningful work. None of it pays; but at least I'm contributing.
There were years when even that much wasn't possible, so I can never take that for granted. There are people for whom even this much isn't possible, and it's an insult to them to complain.
And I know that this year may very well be as good as it ever gets. When I am older, things will very likely be even worse for me. What else can you do in that situation but cherish this day, and spend it banking your courage for what might yet come?
In the meantime, one of the best things we can do with our pain is make art out of it, as a way of sharing some common truth. As long as people like Maggie and me can keep doing that, the slings and arrows the flesh is heir to won't put a dent on our spirits.
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