This morning as I soak up some energy from our backyard trees and try to shake off the "we live by too many people" hang over from my neighborhood having fireworks going until midnight, I keep replaying a conversation Steve and I had over and over in my head.
I've tried for 45 minutes to write about something else, but I can't; and I'm running out of my window of blogging time. So I guess I'm meant to be writing about this. Okay okay I'm listening.
If you've followed Steve and I for a while, you know 2016 has been both very up and down for us. The ups: documentary release, viral videos, cool opportunities; and the pretty crummy lows: scary hospital visits, more complications, things giving out on his body, disease progression. It's all coming at us so quickly, and we are doing our best to ride the waves together.
Something happened, after the last few hospital visits, however; that took us a while to work through. Fear happened. We both started living in a place of fear, constantly. I've talked about this probably 100 times. Living out of fear is a waste of time, living from a place of love is all that makes sense.
So because of that fear, we were at odds with one another, the world, ourselves, the situation, etc. Everything sort of annoyed us about one another and EVERYONE. I'm sorry to be so honest, but man we were annoyed at it all. Sure some we had reasons, but others were happening because of our mindset. We had been snapping at each other, those around us, and have been finding it hard for either of us to get much done.
Suddenly yesterday, after we both had some alone time after Steve's bath, he called me in the room to talk. I had assumed he was reaching a point of not being able to talk through problems with me, but here we sat for 2 hours and talked about it all.
Turns out we aren't really annoyed at each other, or ourselves.... We are f*ing scared. How much has been happening with Steve's body, it's hard to not be. He told me yesterday, "I feel like my body is dying on me, and I'm here fighting against it trying my hardest to live." Which, I told him I could see happening. I've only admitted this to a few close friends and family members, that it appeared like the life was being sucked out of Steve's body.
We have been very honest with others about everything he has gone through, but hadn't admitted to ourselves 100% that we were concerned, although we both have been for some time now. It's not one of those fears where we are manifesting this, it's one of those fears that comes from being so aware. We are so in tune these days, after lots of practice on both of our parts, that the past hospital visits have been beyond just a minor road bump.
It's a sort of unspoken, "Things probably won't be getting better from here, buckle up." Steve made a status yesterday that surprised some, reconfirmed some people's thoughts, and ultimately put his truth out there.
Here it is the truth most don't want to hear. This past year while things have progressed far as terms of ALS progression, it seems most others, also got involved in their own lives. The visits became less, the messages, etc. Seems like the entire world has shifted from compassionate working together, to totally self focused, and cut off from one another. I'm not innocent in this. I'm like a turtle, when things get rough, I want to hang out in my shell and avoid contact with anyone. So it's not like I'm over here planning our typical parties, or concerts; etc.
However, as we are quickly approaching the 5 years of diagnoses point, it's not like it's any secret that our future has been unknown for sometime now. This isn't a blog to make anyone feel bad, or call anyone out; in fact like I said before I REALLY didn't/don't want to even write on it. The last thing I want to do is invoke a bunch of visits, that come from a place of guilt over love. The last thing I want is to make people feel bad. All I want is for us all to maybe come out of our shells, and learn to get through this together again.
Together is the only way we can do this thing called life. I'm realizing it more and more, being surrounded by people is as important as being surrounded by trees and animals.
So here it is. Truth.