Tuesday, June 30, 2015

A Little Bit Of An Update

So many of you have commented and privately messaged me and have wondered when I was going to come back to writing. I had plans to stay away for a while and regroup but I realized that I can't totally abandon this blog. In the years past, I have written every single day and have told you how Thomas is doing and how I've been doing too. Essentially I have made Thomas your child too and I know that you all care about him and want to know how he's doing. So, I thought I'd write today to fill you in a little bit on what's going on.

It's interesting when you step away from this illness and the constant vigilance for a while, you seem to get a little perspective. The truth is that even though I've been gone from here and I said I was checking out of Thomas's life that there has still been a part of me keeping an eye on Thomas. I think it's impossible to turn our back on this illness and how it affects our loved ones. I did make a concerted effort, however, to stop being so involved in all things Thomas and while I have felt a special kind of ache inside because I've stepped back, it has done some good to do that. I am here to say to you that I believe we all need to "check out" from time to time to get our bearings back. This illness is so all-consuming and it's so easy to get lost in it. I know many of you don't have the luxury of being able to "check out" because the demands from your loved one's illness make that virtually impossible. I can guarantee you that if Thomas were seriously psychotic that I wouldn't have done what I did. As it is, he is kind of cruising along in a kind of zone where things are not great but they're not terrible either.

One of the things I have noticed with my "absence" from Thomas's life is that he has turned inward even more and has isolated himself a bit more than usual. I want it made clear that I haven't completely walked away from him and ignored him, I could never do that. Even with the distance between us, though, I can see that he's struggling. He and I have not had a single conversation about the changes in me but because we are so tied to each other I know that for him, the distance has not gone unnoticed. I told him a few days ago that I had stopped writing the blog and that was met with an interesting response. He sat there silent for a minute and then sadly asked,


And then seemed kind of sad. I asked him how he felt about that and he told me he didn't know. From my point of view I saw a young man who was disappointed but didn't feel like he could say anything about my leaving. I know that a part of him must like that people like to hear about his life and I think he felt a little bit like I was disappointing everyone by leaving. I think we all need to feel cared about and I think he has felt like he has all of you in his life and that you care about him. As such, I promised him that I would come back every now and then and that I'd let him know what people were saying. This seemed to settle him some.

Along with his increased isolation has come a restlessness that doesn't ever seem to go away. He disappears out the front door a lot with his mp3 player and headphones and sits on the porch for a half an hour or so a few times a day. I don't know what's up with that and I haven't asked. I am working on not being so intrusive in his life so I am letting him go about his life without my eagle eye on him. Well, let me be honest here, my eagle eye is still on him, it always will be, but I am not asking him how he's doing as much.

I know that he is dealing with a few other things but I will save that for another post. I will tell you that he continues to work but he only works one day a week and he hates every second of it. He no longer cares about the money he earns and sees no reason, really, to go to work except for the fact that it gets him out in the world dealing with people. I really don't know how to help him want to go to work so I have left it alone but I am watching it. You might think that the loss of desire to work has been because he gets Social Security but he doesn't see that money except when it comes time to buy something necessary for him like food or jeans or something like that. None of the money is spent on frivolous items and he knows the money he earns at his job is for that and still he doesn't seem to want to make the money to get those fun items like video games and such. I worry that he's disappearing inside of himself.

So, that's a bit of an update on things here. I am planning to begin to write again but only once in a while. If what people are saying is true, I am told that I make a difference with what I do and if so, I want to keep doing whatever I can to make that difference in people's lives. This blog and the Facebook page are still all about advocacy and telling Thomas's story along with mine and I think that I have something unique here in that I am someone who pulls no punches when it comes to the truth about what it's like to live with this illness.

I am never far from here on this page and I certainly haven't abandoned Thomas. He will always be inextricably tied to me and as long as it is within my power to help him, I will. As I said, I just think he and I both need a little distance.

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