Five years

It is five years since Dave's accident today and I really, really didn't want to write this year. I don't like where I am in this process. Which is even more dismaying because I thought the "process" was over, that I had come to a point of acceptance. But apparently not. Apparently there are layers upon layers of process I'm still waiting to discover and I'd really like to know when it ends. I'm writing anyways because this annual check in is important to me, personally, and I make it public in case anyone else reading is dealing with something similar. (years one, two, three and four here)

This year I am angry. Angry and resentful and completely ashamed of myself for feeling that way. I'm exhausted. Our family is exhausted. I'm frustrated that every solution I've come up with over the last five years has failed or at best been extremely imperfect.

Over and over again I think I've finally given up hope (which I guess I equate with acceptance, that elusive state) and then I think of something else and manage to convince myself that this time it will be a solution. And then it fails and I lambaste myself for my stupidity. There is no simple solution. My family is not going to magically be fixed.

In August my mom got very sick and we had to scramble to find a way to take care of Dave. In desperation I ended up bringing him to work with me for a week* and then found a respite care facility close by where he could stay for another five weeks. I convinced myself that we would use this time to somehow improve things. I found a self therapy program for brain injury online (patient guide here, family guide here). I read it and felt hugely hopeful** and tried to get Dave to work through it. He was motivated in theory but not so much in practice. I struggled, trying to decide how much I could expect from him, whether the difficulty of pushing through the program might be worth it. Every day for at least an hour I would push him to make a schedule, to work on the exercises, to figure out meaningful activities for his life. I ended up wrung out and exhausted. Dave felt inadequate. We were both resentful. I was putting in long days at work (trying desperately to prove that my family situation wouldn't impact my work performance), hitting the gym in an attempt to knock out some anxiety and then heading directly over to work with Dave before going home to make dinner at 9:30 pm. I don't know how people do this. And there are so many people out here who do this, or something similar.

Here is what I hate about myself, what I don't want to admit to anyone - I'm resentful that this shell of Dave is taking up so much of my time and energy. I want to be able to spend more time with our other parents, who also need us. I want to be able to spend more time with Dustin. Our friends are buying houses and having kids and I'm so damn tired and discouraged that half the time I can't think more than a month ahead, juggling family schedules and trying to make sure that no one feels neglected. I feel hollowed out, right when I want our lives to feel full of possibility. I want to be dreaming instead of doing constant damage control.

I'm terrified and ashamed by how bitter I can feel towards Dave at times. None of this is his fault. And yet I'm still angry with him. I still manage to be hurt by the fact that since the accident he hasn't once asked me how my day went, or how work is going, or how Dustin and I are doing. I know that this isn't his fault, but it still hurts, to invest so much time in someone who has so little to give back. I worry that all this anger has displaced the love we had. But the first night I had to leave him in the respite facility, as I watched him walk into the dining room for dinner, alone, without one of us, for the first time in nearly five years, I had to fight the urge to stay just so I could make sure he was okay. I was so afraid he would be lonely or disoriented, that the other residents wouldn't understand him and he'd have to sit alone. My fear felt physical, like a punch to the gut. I dragged myself home and cried for three hours before giving in and going back to check on him. He was fine, of course. How can I love him so much and still feel so much anger towards him? I want to be a person who loves unconditionally and gives selflessly, who balances work and family and a personal life effortlessly and still has a sense of humor about it. The best I can seem to do is to look like that person at least some of the time. Inside I just feel horribly selfish, fraudulent.

There is still so much love in our family that I have to believe we'll figure out some kind of long term solution. (If I can't believe that, how can I keep going forward?) I'm not sure what we're going to do but we'll keep trying. In the meantime, I'm fighting to break myself out of this crisis mindset, to whatever extent I can. The anger and resentment were big wake up calls for me. I don't want to be an angry person and I don't want to resent my family. So I'm trying to set aside more time to just hang out, fighting the (entirely self-imposed) guilt I feel every time I'm out having fun instead of doing something for my parents. D and I are looking at potentially moving to a new neighborhood, which is no big deal when you rent, except that it feels simultaneously impossible and overwhelmingly exciting. This is how I know I need to open up my life a little more, because the prospect of moving 7 miles away feels daring and spontaneous (note that we've been talking about doing this for four years and keep putting it off because it never seems like the right time - I have to stop waiting for the right time and just start doing things).

So I'm not in a good place this year, but I'm going to do everything I can to be in a better place next year. I think I need to stop fighting this situation and just work on changing myself as best I can.




*Um, yes. This was not my finest professional moment. Asking my boss to let me bring my brain injured stepfather to work with me was difficult but taking time off would have been a bigger hardship and I'm incredibly lucky to work in a supportive environment. I try really hard not to bring my personal issues to work with me because I'd like to be known for being awesome at my job, not for being that person with all the family crises. But sometimes it's unavoidable.

** I'd highly recommend this program for people dealing with TBI. It was helpful to me, as a family member, and I think it would be amazing for many patients. I'm not sure if Dave isn't quite motivated enough or if it's my fault for not having enough time to dedicate to it, but even on a limited basis I think it was useful for us. If we could somehow get the system into place, I think it could be even more useful (apparently I'm chronically optimistic, even when I'm trying not to be).