While everyone was up watching the debate, I was pacing back and forth between suctioning & failing at comforting Steve; and maybe some screaming and crying a few times too.
It was a rough night and after I write this, I'll be packing for a trip to Emory Johns Creek.
I don't know what it is, but I break down in these moments; as Steve's desperately looking to me for comfort. I have nothing.
Sure I have the, "You're okay," or the, "Close your eyes and let the meds kick in."
Really what does that help?
I'll tell you, it helps nothing.
The look he's giving me as he's breathing a rate of 31, when his usual rate is 16; reminds me that it's all real. It being ALS & it's bag of BS.
When he's stable it's like I suddenly become disillusioned that everything will be okay, and fix itself. Then well a rough night comes, and that illusion quickly disappears and I fall apart.
Maybe it's that, that makes me scream at God, or slam things around (it's my favorite method of pouting). Maybe it's because I can't take away the discomfort or pain from him, or it's the pressure to think I can do that to begin with. Maybe it's just that I'm so damn tired from everything we've already had to adjust to?
Really maybe it's just love. That a person I love is hurting, and I feel it all; the anxiety, anger, pain, tightness in chest, etc, and that's all too much to always be able to hold it together.
Anyways, while everyone is digesting a debate that I'm sure was full of meanness and chaos, I'll be packing away to get ready for a trip to the hospital. Where I will have to defend myself for why his hair is so dirty, and have to speak for Steve to all those nurses trying to take care of him, and well we try to find what complication, again, is leaving us here.
This is life with ALS, and while I sobbed on the phone to my mom of how I wasn't strong enough for this, we all know I am; and even in moments of pure exhaustion I'm still here.
Okay, Steve will wake up again soon, and he will be ready to go, so....