**Not for sensitive ears or eyes**
You know how my last blog post was about happy endings? Well, fuck that!
Justin and I haven't been close for several years. We reconnected earlier this year when his son was born. I thought he'd gotten his life back on track. He looked good. He seemed good.
This experience with him has been hell. I am now the person I coach at work. I am the person I tell, "It's ok to cry, but try to hold yourself together in front of your baby/son/daughter." I had done ok the past few weeks. The first days were awful. I collapsed onto him, basically, when I saw him the first time. Otherwise, I have held it together and cried outside. I have utilized the good drugs Mother Nature and science gave us by prescription to get me through the toughest moments.
SO...I stand for 14 hours or so a day (because the ICU staff are glad to have someone with him) and do every little thing I can for him. It might be scratching an eyelid or a nose. It might be adjusting his bed 20 times because nothing is comfortable in that halo and every place he can feel is uncomfortable. I stand because he can't move his head and he wants to be able to see me. That means either directly beside his head, leaning over or at the foot of the bed. I am one of those people I say needs a break.
I guess when you wake up multiple times a day, and it's like a lightning strike every time that is more the life changing event than the actual event. All of this has made Justin have several epiphanies. The gut wrenching conversations we're having are Oscar award winning material. Today, though, it was a 4-word sentence that did me in. He's used humor. He's been angry. He's been weepy. Today when he'd asked me to scratch his eye again, he just looked away from me and said "I hate being paralyzed."
His lungs looked better for a while today, then he had a very rough afternoon. He scared me to the point of hiding in a corner and I don't hide in corners. I feel so alone. I need a Navigator!
I was actually told to leave the cafeteria tonight by a rude volunteer who pushed me out of line because they were apparently having a special dinner tonight, but this was before the cafeteria was closed. I'm so delirious with exhaustion and sadness, I didn't even call a bitch out!
I'm just sad. I was so damned happy and I bragged about it. I shouldn't have ever done that. Two days later, we got calls that Justin was sicker and it was grim looking. We get it worked out for me to rush down here and it's been pure misery to live and watch. There is so little I can do for him and yet, today, he told me thank you. He said he never expected that I would be the one by his side, rubbing his head, scratching his nose and keeping his nurses in line. My response? It doesn't matter what people do that we love. The person we love is always inside.
So I'll do my very best to keep coming as often as I can to this hell hole of a town. I'll stand in his room 12-15 hours a day. I'll love his wonderful nurses (like the one who came to hug me today just because I looked like I needed it) and call out the ones who are shitty (like the one who thought it was ok to make Justin wait nearly 15 mins for something that took less than 3 when that's all he wanted in exchange for going back on the vent early). I will fight the urge to scream until I get in my car going down the interstate. I will fight the urge to cry my eyes out until I'm at least in the parking lot. And now, I will try to sleep on this lovely futon that's at least free and just down the hall from him.