Having experienced 13 strokes so young I don’t really know how to deal with that.
Part of me is like - oh. It’s okay. Feel sorry for yourself. Just take it easy, nap on the couch.
Then the Thomas side is like - get off your ass. Get up. Go outside. Do something.
I end up spending a lot of time sitting in the yard. Too hot to really do too much, or just being outside.
Today I’m trimming the hedges…something totally new for me post stroke, and oddly something very tough…having to hold the saw up for that long is a lot. So…I’m sitting extra today.
I’ve finished up with Physical Therapy…she said she was about as far as she could take me, so Benton found me a trainer that understood what all I’ve been through, and wanted to take me farther. I started that on Monday…Thomas, and new people, new situations…is not good. But, I’m really enjoying it. Feeling sore in all new places, and different things are waking up. It’s a weird feeling. But, I feel like there is progress.
Life is changing, or has changed in so many ways that sometimes I don’t even know what’s going on, or what to expect.
I feel like this incredible anger/resentment over the way everything happened - and I can’t seem to control it. It just comes in big heavy crashing waves that I know are out there, but I never know when they’re going to hit, or how many. And once it does start it’s almost like devastation, all over.
The funny thing is it’s usually nothing at all to do with my stroke(s) - very rarely I’ll get upset about being in the hospital and no one listening to me, no one paying attention to me, people talking in the room about me like I wasn’t even there (this is when I was locked in). It was terrifying, and felt like eternity, but was actually less than a week. That part I hate. But, the rest is basically nothing.
The part that torments me constantly is that I was SO SO Excited to get out of that hospital, and so focused on getting out … that I wasn’t there for Trey at the end. There were times when he came to the hospital and just wanted to sleep. He would roll his chair over to the bed, hold my hand, and sleep. It was always during a break so I was already resting - I figured he was just letting me rest. I could never see much in the hospital, and I always saw the Trey I knew…always. It never even registered anything was seriously wrong.
I always always said 10% more. From the beginning of cancer I was always like eat a little more, I don’t care if you’re full…eat, or drink more. We always fought because I was trying to drown him. But, I always pushed 10% more. I have no idea why…I just did. So, in the hospital I do remember him saying his new chemo was really messing with him…so automatically…10% more water. It never even occurred to me that he shouldn’t be on a new Chemo drug already - I always thought it was October or November, not February (and he was supposed to stay on the same regimen through March). So, switching chemo meds in mid January went completely over my head. I was out of it.
I remember asking EVERYONE how is Trey? Where’s Trey? Is he doing okay? All I would ever get back is Trey is okay, focus on you. Including from Trey…he was fine. Focus on getting better and getting out.
At one point in rehab I remember Trey telling me to work extra hard because he was not letting me out, until I was perfect and ready to go back to work. I worked hard. Got out on a Wednesday, and went to ‘work’ the next day. I wanted to show him I was okay.
I was so focused on getting out of the hospital, and so blind to everything going on I feel like I wasn’t there for the last few months of Treys life. I feel like such a let down.
I know I’m going to get a ton of email, or messages, that I wasn’t…but, just put yourself in my situation, and my shoes…it’s a feeling you can’t escape. No matter what anyone says. It’s this horrible empty void that I can not fill, or make sense out of.
The night I came home from the hospital I wanted everything as normal as possible. I REFUSED to let my mom come back to town. I told Trey ‘she had to work’ and I did NOT want to be treated like a stroke victim. At all. I didn’t want anyone buying me special needs anything, at all. I ordered my own shower seat from the hospital…I didn’t want anyone to see me as anything different (I’m not sure what I was thinking).
The day I came home Trey was very tired. In my mind that was because he had been so excited for me to come home he couldn’t sleep….so I wasn’t shocked. Before we left the hospital Trey told me ‘now Thomas your mom is coming next week. She already bought her ticket, so you can’t change her mind’. I blew a gasket. I was so mad I kept telling him she has to work. I can’t pay her! He told me to get over it. She could take me to therapy……something that never happened.
That night I took Trey his nighttime meds for the first time in months. And my rose colored glasses were shattered.
I knew something was up instantly. I think I told Trey right then we needed to go see the dr. I remember being really upset, and sitting in my walker. Trey called benton in and asked him to help me. I know Trey was super relieved I was home, and he kept telling me everything was okay. He was seeing the dr Monday, and Brenda was taking him. I’m pretty sure I threw a fit and said I was going to the dr. I was not crippled and stuck at home. I needed to know what was up. He agreed, and said let’s have a nice weekend, and we’ll see him Monday.
I remember Benton Cleaning my Peg Tube that night, and asking him what was going on. I remember telling him he had lost so much weight, and why didn’t I know? I remember being LIVID at everyone that had told me he was fine. I remember getting so angry about everything.
I had let Trey down. I had dropped the ball.
That weekend (4 days) I felt like a burden. Monday started two of the most confusing weeks of my life.
I was not the nicest person in the world. But, I didn’t know that the heck to do.
I didn’t know what was going on. I didn’t know anything.
I just knew my life was falling to pieces and being taken away. I was mad about everything, at everyone, and so confused, alone, and lost.
I had messed up and had gotten sick at the worst possible time. Everything was my fault. If only i hadn’t fallen out that day. Everything would be different. If only we hadn’t gone to New Mexico for Christmas. If only I didn’t get sick at the Grand Canyon. The way I see it everything points back at me. Its all my fault.
That’s a hard hard thing to deal with. I had lost total control, and all hell had broken loose. I caused everything.
I’m not sure that thought will ever leave me. I’m not sure it can.
People talk to me about my stroke, and want to know how I made it through. And I honestly don’t know. I just did.
But, that was the least of my worries back then. The stroke was a speed bump before the edge of the flat earth…and I never slowed down.
I think with everything that’s happened I never really had time to sit and think about the stroke. Literally just had to go, go, go…and still am going.
I think that has to be part of the reason everything still swirls around in my head nonstop. And on days like today I still expect to see Trey standing at the door making a scene to get my attention - because I’m not trimming the azaleas right. That happened most everytime I worked in the yard. I wasn’t doing it right…so Trey would come out, and take over. EVERYTIME!!!
Now, I try to do everything the same way I remember him doing it.