When giving me words of encouragement, many of you have used the term “strong” to describe me. But what does it mean? Webster’s dictionary tells me that “I’m not easily affected by disease or hardship”. Nor am I “easily disturbed, upset, or affected”. But to me, there’s so much more to it, and I’m still learning what being strong entails. Everyday brings a brand new hardship and obstacle that both Jay and I have to overcome by taking it step by step. There’s so much frustration and angst involved, and it becomes debilitating after awhile. And unlike the dictionary definition, I AM easily upset or affected by all of this. At times I feel helpless, and there are times where I feel confident that “I got this”. What I’ve learned so far during this journey is that being strong doesn’t mean I can’t have moments of weakness; it means holding it together when I have to. Being strong means fighting the urge to cry when tears are welling up in my eyes, so Jay won’t see me upset during his frustration and confusion, and allowing myself to breakdown when he’s finally fallen asleep and I’m overwhelmed with distress. I may not feel strong the majority of the time, but at the end of the day, I know I’m a warrior, and I will continue to be for not only Jay, but for me as well.

Today was hard. Jay had a pretty bad episode where he couldn’t get himself to do what he wanted, but unlike him trying to grab the ketchup bottle, it was with his entire body...
We were watching TV downstairs, and he needed to go to the restroom (which is upstairs). I’ve been giving him a little more freedom (not walking up the stairs with him), so I stayed downstairs. I noticed it had been awhile, and he had come in and out of the bathroom, shutting and opening the door, multiple times. I came upstairs to ask if he was alright. He usually gets embarrassed when he can’t do something himself and hates asking for help. But this time, he asked me to help him put his shirt back on (he didn’t know why he took it off in the first place). I tried putting it over his head, but he would unintentionally try to put his arm in it first. So I tried arms first instead. Once he got his arm through, he couldn’t figure out how to put it over his head. He would get incredibly frustrated and try ripping the shirt. Once we finally got it on, he stood up and walked to the bathroom, closed the door, turned on the light, opened the door back up, and groaned in frustration. I asked him what he was trying to do and he said, “I’m trying to go downstairs”. He repeated walking in and out of the bathroom, doing the same thing about 15-20 times. At one point, he finally got downstairs, poured himself juice, put it on the coffee table, tried getting himself to sit on the couch, but started walking back upstairs instead. He kept turning in circles on the staircase, and said, “oh my god, what is wrong with me? I want to go back downstairs but I can’t”, and ended up back in the bathroom. I went up with him and tried hugging him to calm him down, calling his mom to talk to him, getting him to lay down for awhile, and explaining to him what was happening and why. But after awhile, he gets so overwhelmed that he starts getting upset with me. He told me a couple times, “I need a few minutes to myself”, “stop following me”, and “I want you to just leave me alone right now”. I know he doesn’t mean to upset me, and I completely understand how frustrating it must be to have his body literally fight himself and do something completely different from what he’s trying to do, but damn, did I feel completely useless and weak in that moment. I didn’t know what to do or how to help him. He shut the door, and I instantly started crying. I was scared he wouldn’t be able to snap himself out of the repetitive behavior, and I couldn’t do anything to help him. I realized he needed me to be strong, so I gathered myself. He came out and finally laid down. I tucked him in, brought his juice upstairs, and gave him a pain pill and a kiss. He said, “Thank you for taking care of me and being so patient. I’m sorry for being a dick to you...I just get so frustrated and don’t know what’s going on”. And when he said that, I knew even if I didn’t feel like it, I was strong.

Jay has an appointment with the VA bright and early tomorrow... 8:00am in Dallas (ugh). We find out where he’ll go to rehab, about his benefits, and we’ll get him set up with a primary care doctor and a brain & spine neurologist.

We just ordered a pizza (for the 3rd time this week. Judge us), we’re going to watch a movie, and then head to bed early.

Thank you for taking the time to read my updates. If any of you have experienced what Jay and I are going through, please reach out to me. I could use some first-hand advice. I’ve never experienced anything even remotely close to this, and it’s been a pretty lonely and frightening journey. Goodnight!

This was Jay when he finally fell asleep after his episode today. He looked so peaceful (and adorable).