I've got thick skin and an elastic heart

You did not break me

I'm still fighting for peace

Well, I've got thick skin and an elastic heart

The heat wave feels endless. I got itchy and impatient the other day and determined I'd go to the barn--not for anything fancy, just to BE there. Thoroughly clean stalls. Put down new shavings. Put a big metal feed tub in for the goats. Let Firefly out to eat the bits of grass inspired to pop up after last week's freak storm. Give everybody treats in the form of half an overripe watermelon and bruised apples cleaned out of the fridge.

98 degrees outside notwithstanding, I said fuck it. I gulped large amounts of ice water, put on a wide-brimmed hat, waited for the shadows to get long in the day. I dug out a favorite item from my hot horse show days--a neck wrap filled with absorbent crystals that I soaked in ice water--and put it to use.

I went. I did all those small, but significant to me, things I had planned and hoped to do. I was careful, spending no more than an hour. I felt recharged, victorious, refilled. My soul lifted high again.

I'm like a rubber band until you pull too hard

I came home triumphant, hungry, hot, sweaty. I showered, afterward feeling refreshed but tired. And then the creeping sensations told me in the humming muscles and pounding heart that I had overheated. My head, bones, skin throbbed, though more in exhaustion than pain. For more than seven hours after getting home, I still felt these effects of the heat. When my husband hugged me, he commented my body felt unusually warm, and when I went to bed, what sleep I could manage stumbled choppily through the lingering effects of the heat on my ridiculously heat intolerant body.

So triumphant as I felt that I got to go do what my soul was so hungry for, my body paid the price. And then I was just pissed about the unfairness of it all, as though I'm owed fairness.

The lyrics to Sia's "Elastic Heart" have curiously echoed in my more-spacious skull in the last few weeks, though I knew only a few lines. While trying to cool off on the couch, I watched the video and broke down, the tears pouring as though a dam had burst. I went to my husband's arms and started sobbing, the hard, messy kind of tears that burn the eyes, fill the sinuses, and tighten the throat. 

He gently reminded me that I can go to the barn; how a year ago it was not possible. He had taken the boys to an air show that day (I stayed home--not really my thing, plus all day loud and hot and lots of walking equals no thanks) and had driven up the coast with them. During that drive, my husband and Boy 1 (Boy 2 was asleep) recalled the last time they'd made that drive--they'd taken me to Santa Monica for my CINE MRI. That test was excruciating for me and was a defining moment in this process; from that moment on, I was convinced I had something wrong at the back of my head. The procedure triggered a horrific headache and, unable to shift away from pressure while the test was run, my eyes went dramatically bloodshot. Husband and Boy 1 were recalling how awful that headache was, how it lingered for days after, and how wonderful it was that those headaches were gone. Other problems remain, sure, but those were gone, and Boy 1 and 2 got their mom back, and my husband, his wife.

I agreed, it was, is, wonderful, but lamented now I'm here, confused about my life, my body, and how differently it behaves. I waved my hand at all the horse show ribbons in that office, saying I did some shows wearing a wool huntcoat in 100+ degree weather--how can it be that now just doing an hour of barn chores, using all the precautions I used in my horse show days, overheats me? I miss this, I said, pointing at the ribbons, I miss riding my horse. I miss barn life. It has been my lifelong dream to own horse property, and now I don't know if I'd be able to tend to it.

As the tears calmed a bit and I continued trying to explain my emotional and mental battle, my husband in his typical sympathetic, gently concise way summarized my struggle: "You're well enough to miss what you've been missing."

That's it. That is it. That's it. 

The tears poured again.

I sometimes feel I must keep a Happily Ever After front. I've had my surgery and now I ride my white horse off into the sunset as the credits roll. But admittedly, some days it is a struggle of feeling lost and purposeless, angry and impatient, and aggravated that what was cannot be what now is, and I can't make it go back. 

The difference is I now have the luxury of grieving my old life. I have a mind sharpened and eyes brightened by increased CSF flow, but a body still plagued with the damage done to a long-compressed brain stem and a lifelong connective tissue disorder. My mental energy has bounced back to where I want to go out and DO ALL THE THINGS! I once could do, and while much more is available to me, the truth is restrictions remain. And that pisses me off.

I'm well enough to miss what I've been missing.

My life now is about exploring new routines, new procedures, new expectations, new realizations, new understandings, new boundaries, new limits. Maddeningly amorphous as it sometimes is, I'm discovering them while I go about living this glorious, frustrating life, knowing nothing is owed and understanding everything can change. Now and then, the grief of losing what Was overtakes me, and that is okay.

Because I'm also well enough to live my life. 

And I know that I can survive

I walked through fire to save my life

And I want it, I want my life so bad

And I'm doing everything I can

An internal battle with one's inner self, expressed externally.