What is Hope?

Last night I laid in bed crying--

I do not often cry.

Last night, I laid in bed crying
the cause being the exposed nerves in my gum,
the ones that are unattended to and often forgotten,
until they are inflamed and present and real.

Last night I laid in bed crying, something I never do, while rocking back and forth and listening to the pain as if it could tell me something, teach me something, help me in some way--
and my phone beeped so I looked at it
and I answered the text.

Last night I made plans for today, even though last night I could do nothing but listen to the roar in my body,
listen to it take me over,
and then respond by making plans for the next day.

Hope is believing pain ends.

Hope is how I live.



On the nights where I lay in bed for hours, wishing for sleep, the thought of seeing the sun rise consoles me.

This morning I put my sneakers on at 6 and wrangled my dog into her collar and leash. I strapped my iPhone to my arm and we took off for the ocean, a 3 mile round trip.

Running through this latest lupus flare has been tough. I missed a 5K this weekend because my ankles swelled to twice their size. It's harder for me physically, and it's hard mentally to accept my limitations. To resist the urge to push until I do more damage.

But my body surprises me. When I think I'm on empty and I am out of breath, I find that we have made it here.

I stop where the sand meets the ocean, and I stare, and I marvel at how lucky I am that I am here to see this; how lucky we are to be here at all.



I've mentioned before the phantom dreams that haunt me when my body is under attack and my adrenal system is pumped full of steroids. It's the moments between consciousness and unconsciousness, when I'm aware that I'm dreaming but I'm not fully able to stop. 

Tonight I was dragged under–and that's how it feels, dragged under the rip tide with no way to swim out–and my half dreams were more vivid than usual. I heard the little girls laughing, pulling me off the couch to get up and play. And I saw them playing ahead of me at the lake, but I couldn't join them. Eventually they no longer saw me; they forgot I was ever there.

As I fell more deeply into sleep,  more images appeared, almost too quickly for me to see. My friends, dancing at my favorite bar in Brooklyn; my camp friends at our race in Denver. Again, the further I got pulled into sleep, the less of a participant I became. They couldn't see me. They couldn't hear me yelling, asking to them to wait up.

In real life, I have missed many milestones and inside jokes because I wasn't there, because I was sick. I have come to peace with it but I still hate missing things. I still fear slipping away.

These dreams are nightmares. These dreams are loss.