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.
There are many of us far away who read your blogs, follow your Facebook posts, etc. We love you and pray for peace for your hearts and souls. Hope, you are pure light and a special angel. What I admire is the way you own your feelings and don't blame others for them. You give so freely to Steve and he shows his love for you with every look and every word. You two are special, and many of us care, even if we can't run over there to help!
ReplyDeletehope life is short you and i have both dealt with that many times in life im am so sorry for how this is coming to the end of a journey for you .But as you know when one thing ends something new starts i really wish you all the best you have been and done more then your best and you have so much to show keep going you go girl hugs for you both stevedon't mean ever to say mean things its all because of the pain this you now he is lucky to have you beside him
ReplyDeleteI often think about ALS and it's victims as all survivalists. The ALS son a bitch is trying to survive just like the person it manifests... just like a cancerous cell invading a liver... it's all about want to survive. ALS wants to survive in their bodies and unfortunately will ultimately win as we have no means to treat it but I'll be damned if it's victims don't go down without a fight. Life is going on all around us too... visits are less, calls, emails, even from family. It's like we have been forgotten in the midst of our despair. You really see who is ultimately there for you thru thick and thin and man sometimes is that a hard pill to swallow.
ReplyDeleteI often think about ALS and it's victims as all survivalists. The ALS son a bitch is trying to survive just like the person it manifests... just like a cancerous cell invading a liver... it's all about want to survive. ALS wants to survive in their bodies and unfortunately will ultimately win as we have no means to treat it but I'll be damned if it's victims don't go down without a fight. Life is going on all around us too... visits are less, calls, emails, even from family. It's like we have been forgotten in the midst of our despair. You really see who is ultimately there for you thru thick and thin and man sometimes is that a hard pill to swallow.
ReplyDeleteI don't know exactly what you and Steve are going through but I do know fear. Fear sneaks in and takes the strongest and most formidable opponents down onto his knees. Recently when my 5 year old daughter was in the hospital for open heart surgery, I had to meet fear face to face. I thought I had whooped it's butt before stepping into that hospital and I thought my armor was on straight and was impenetrable. But as I sat and waited trying to keep my armor on by reading and praying and even posting for my family and friends the words that should be encouraging, I found myself just an ugly cry blubbering ball of flesh who just couldn't handle any more uncertainty or waiting. I demanded to know what was going on but it came out like a weak what's going on... In that moment I just couldn't. So I just let it out. I cried and told whoever was there (husband, MIL, friends from church) that I was so worried and fearful and I
ReplyDeletejust needed to know. My husband went to see what happened and while he was gone, I came to a realization that despite how much I prepared, I am only flesh. On my own I just doubt and fear. But when I let it out, I found an ally to help me. As I just read your blog, I read how alone and isolated y'all feel. I understand completely. It's okay not to be the strong force y'all try to be. Because just like us you are only flesh. Please do not be afraid to be real and to share. But remember to confide and to call out for help from those that will lift you up. I'm praying God sends you allies that will not only understand your fear and troubles but give you peace, comfort, and the tools to face those fears! There are many bible verses about God being our strength but one that really spoke to me in my ultimate weakness and fear was in 2 Corinthians 12:9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
I think it resonates so strong that we won't always be strong. Even when we try to be and even when we call out to God. We are beautiful not only for our strength but despite our weaknesses. Love y'all and we are praying!
Hope & Steve, I understand just how you are feeling. The last say six months of my sweet Michael's life we did the same. It was just fear. He knew it was coming and I felt it before it was spoke about. He did not go on ventilater. His choice. He said he couldn't. He only lived two years with ALS. He was tired his body was tired and he was ready. The family not so much. We miss him every day. You have to do what's best for you. It's a must. We got over our "not talking" and talked a lot like you did. I am very glad to hear it because if you didn't you would regret it forever. I pray for you both every morning and evening for strength. I love you guys from afar even if I don't always comment. I always will for all who suffer with this awful awful ALS!!! I can truly say I hate it!!!!!😡😡😡
ReplyDeleteWhat you say about the visits coming less and less is very common. I used to hear that people don't know what to say or how to act. It's a sad reality when ALS progresses to the point where there is no voice. It was my honor to meet and get to know the man with ALS who couldn't speak, swallow, move a muscle. I got to know the man for what was in his heart and mind. I fell in love with that man with ALS (who was ready to be disconnected from the ventilator that kept him alive for the last 6 years) and we married. I watched his pain when he talked about how his family abandoned him and friends stopped coming over regularly. All I can say is enjoy the time you have together. If it's at all possible get him out of the house. Take him to concerts, restaurants. Do you have a van with a lift? Fortunately for us the 15 years he was on the vent he had zero hospital visits. I contribute that to the nurses and I getting him up and dressed and out the door at least 3 times a week. It was great on his psychological well being. Maybe Steve will focus on having fun while enjoying all the fresh air. It's worth a try. I pray you don't take this the wrong way. I know how much love there is between both of you. I'm simply speaking from my own personal experiences with life with someone on a ventilator who lost every movement with the exception of blinking and being able to pop his right eyebrow up and down which is how he communicated. You and Steve are always in my thoughts and prayers.
ReplyDeleteWhat you say about the visits coming less and less is very common. I used to hear that people don't know what to say or how to act. It's a sad reality when ALS progresses to the point where there is no voice. It was my honor to meet and get to know the man with ALS who couldn't speak, swallow, move a muscle. I got to know the man for what was in his heart and mind. I fell in love with that man with ALS (who was ready to be disconnected from the ventilator that kept him alive for the last 6 years) and we married. I watched his pain when he talked about how his family abandoned him and friends stopped coming over regularly. All I can say is enjoy the time you have together. If it's at all possible get him out of the house. Take him to concerts, restaurants. Do you have a van with a lift? Fortunately for us the 15 years he was on the vent he had zero hospital visits. I contribute that to the nurses and I getting him up and dressed and out the door at least 3 times a week. It was great on his psychological well being. Maybe Steve will focus on having fun while enjoying all the fresh air. It's worth a try. I pray you don't take this the wrong way. I know how much love there is between both of you. I'm simply speaking from my own personal experiences with life with someone on a ventilator who lost every movement with the exception of blinking and being able to pop his right eyebrow up and down which is how he communicated. You and Steve are always in my thoughts and prayers.
ReplyDelete