Just me...

I really don't understand people.   I just don't.

Tomorrow, I was to have company for dinner and the NASCAR race.  All week I have been looking forward to the company and the meal.  That's one reason why I went ahead and made another batch of spicy Dr Pepper pulled pork.  Tonight, I texted my guest to find out which dessert was preferred.  The response I got was that a better offer came up for tomorrow evening.

A better offer.

The person asked me to have the pulled port tacos again.  I agreed and suggested the day.  The company agreed.  Excited, I texted about making a fresh batch of pulled pork.  I received back quips about how great it was going to be to have the tacos again.

Then a better offer.

I do not understand that kind of thinking.  I mean, if the person was ill or something arose that needed facing, a rain-check would be something that just happen.  Things happen.  But to have another offer of dinner and an evening out and choosing that??  As much as I really struggle when folk lie—after a lifetime of all the lies that come with hiding abuse—I think I would have preferred the lie instead of knowing that dinner with me was so easily discarded.

For my birthday, I received coupon book of all the things that I savor:  game nights, dinner out (a normal thing), help around the house, and hearing the Word of God.  Only, it turns out, the coupons are ... for lack of a better word ... worthless.

For Christmas, I received a pair of GREEN high tops, to wear as casual boots with my flowy jean skirts.  I was touched and thrilled, but the high tops were several sizes too large.  The gift giver told me that returns/exchanges were not a problem, so I gave back the high tops and my shoe size.  I never received the proper size.  I couldn't understand the purpose of giving a gift, promising to exchange it, and then acting as if nothing ever happened.

It is very, very, very hard not to be hurt at being tossed aside for a better offer.  It is very, very, very hard not to be hurt to have a birthday gift that is filled with help and opportunities for fun taken back.  And, mostly, I just wish that Christmas had nothing to do with gifts.

It's one thing to ask for things and be turned down ... or be rejected.  It's another thing not to ask and to still find yourself ... rejected.

Of course, on the morrow, I mostly certainly will still be eating pulled pork tacos.  And I will be watching the race.  But that doesn't mean I won't be struggling with hurt.  And feeling rather lonely.

To the latter, I have savored reading through the posts on Living with Bob, the blog I found by a woman struggling with dysautonomia now eight years.  Entry after entry after entry, I keep thinking I am not alone.  And I struggle with thinking what's coming next for me.

In one entry, Michelle writes about meeting up with other Bobettes, women struggling with dystautonomia met online, in person. "To sit and laugh with people who know the joy of lying down on floors in public, throwing up, looking like a drunk and all the rest of the joys that go along with this syndrome, is fabulous."  I smiled.  ...the joy of lying down on floors in public... Oh, how many times have people asked me why I would possibly want to be on the floor in public.  The floor?  The floor is safe.  There is no place to fall when you are lying on the floor.  It doesn't matter if the floor is the post office or Walmart or the gas station.

Sometimes she writes about how important the smallest things can be, such as a get well card made by a young niece.  A simple note.  I groaned and grinned when she writes about making choices to do things knowing she'd pay a heavy price for doing so.  And, of course, the nausea talk.

About that meeting, Michelle wrote about how wonderful it was to be normal.  To be around folk whose lives mirrored her own, who understood the daily battles, who share the same and had different war stories of their own.  Being normal, not just being the ill one or the wounded one, or the confused one, or the terrified one.

Something that astounds me, even now, is that in my enhanced state of girth, compliments of steroids (which I now refuse to take), my best friend never once saw me as obese.  She never even said anything about my tendency to hide behind her lithe frame whenever we took a picture together.  I was not the fat person, nor am I now the wounded person or the ill person or even the confused person.  I am just a person.

In my family, weight is everything.  I am so bloody sick of talk about dieting or exercising or bad foods.  Eating is a gift.  Tasty foods are gifts.  Enjoy them.  In moderation, yes, but enjoy them.  My worth, who I am, is still viewed by my weight.  In my family, that is.  Yet, no matter the 90lb weight gain, I was never my body to Becky.

I signed up for notice from a dysautonomia national group if there are others in Fort Wayne who wish  this wretched disease.  Thus far, no emails have come my way.  Well, some have, but from far away in Indiana.  The thing is, whilst I would about near die of joy to be able to talk with others struggling with dysautonomia, you don't have to have dysautonomia to make me feel normal.

A game, a lunch out, a brief note ... things that are not about my weaknesses.  And seeing first as a person, not an illness or a wound or confusion.

I am utterly loathe to see photos of when I sported such girth, primarily because I heard about how I was disgusting, was an embarrassment. I heard about how I obviously didn't care about myself, even though I gained all the weight for one medical issue and lost it all later (in a rather short time) for another medical issue.  However, I thought I might do something as astounding as Becky.  Would that it were I had her vision of me (or Mary's for that matter).  I do not.  But I can be extraordinarily brave and post a photo of us.

Becky was seven months pregnant here.  But she still climbed a tree with me.  Life had not yet cognitively and neurologically fallen apart for me, though the early symptoms were there.  I practically lived in that outfit outside of work because of all that weight I had gained, everything else too small to wear.  Funny that, now, I practically live in just a few outfits, everything else too painful to wear.

This moment in time ... terrible things had happened just before and after.  Someone who was hurting me was with us.  Things I kept hidden from my best friend, ever so fearful that she would no longer like me.  Terrible things that, when I finally admitted, she still didn't see as me.  I wasn't obese. I wasn't a victim/survivor.  I wasn't a chronically ill person.

This moment in time was normal.
Two gals climbing a tree whilst camping.

Michelle writes in her blog about how her dogs watch her in the shower.  Amos does that!  She writes about the agony of the weight of a t-shirt against her abdomen.  She writes about having both bradycardia and tachycardia and never knowing which will fell you.  She writes about fainting, near-fairing, and low blood pressure.  In fact, she writes about how the mornings are bad because of the cardio symptoms, which gave words of explanation for me as to why my mornings are bad.  I feel so wretched in the "mornings," not just because I hurt more, but because my heart rate and blood pressure are so wonky, having been lying down for hours and hours, even if not sleeping.  What a blessing it was to have the dots connected for me.

She also writes about the very illogical resistance to anything acknowledging disability.  The dreaded cane purchase.  A shower seat.  A wheelchair.  Why in the world would you not want things to help you??  Because having them means I really am disabled.  And I don't want to be the disabled one.

Michelle writes about being mistaken for being drunk.  What an excellent description!!  Sometimes, when I get up from trying to sleep, I stumble about like a drunk, dizzy and unable to concentrate to perform motor tasks easily.

I don't live in Australia.  I don't have a husband and children.  I experience a completely different medical system (though still a nightmare).  It is not as if I am her or she is me, but Michelle does understand my life (and is a whole lot better at writing about life with dysautonomia than I).  And she understands how important the normal is.

When you are told that you are a burden, it is far too easy to believe that you are.  And then to start acting as if you should be grateful for anyone who would be willing to put up with your burden.  You listen to how being friends with you makes the other person feel a bit better than others, the one whose willing to deal with you and you find yourself thinking that's something true, something the way it should be.  To Becky and to Mary, I am not a burden.  They do not have a scale between us.  They do not stick jewels on their crown for being my friend.

To them, I am just me.  And it is okay that the just me at the moment doesn't know what that means, who I am.  That's mercy.  But, hey, maybe they aren't people.  Maybe they are really angels and I don't know it.  Or maybe they are just Nutters like me.  Eeither way, like I said, that's mercy.

So is being able to see yourself out there in the world, to read about struggles that mirror yours, to know that times of simply trying to endure the very next second are nothing to be ashamed of, are part and parcel to life with dysautonomia.  To be the tiniest bit less alone.

Even if still hurt to be dropped for something better.