Dream operator

by Linnzy

When I finally had to quit my job, almost one year ago, I saw my plans and dreams collapse. This wasn’t just a 9-to-5 to pay the bills; this was a vocation. I loved teaching and especially in a situation that had been tailor-made for me. I envisioned writing my master’s thesis and looking into getting it published, and eventually receiving a doctorate in deaf education or applied linguistics, and becoming a tenured university professor.

Back when I was healthy, focusing on these dreams was a positive and useful activity. I was always brainstorming ways to teach better, write better, carve out my niche in academia. However, since becoming nerfed, focusing on these same dreams brings feelings of grief and loss, rather than excitement and the urge to plan. I begin obsessing over what could have been, which is a fairly sizable waste of time.

But it’s a mistake to give up on dreaming about our futures in a positive way. No, I’m not making any plans that are contingent on a miracle cure or my CFS going into remission. I’m changing my focus to dreams for my future that are meaningful, realistic, and achievable. And it’s a struggle, for sure. How much easier it would be to simply curl up in bed and forget about the extra effort – and associated pain and illness – it will take to craft a life for myself out of the scraps I have left.

However, that just isn’t who I am. I’m not capable of giving up on my life yet, and I’m lucky to be functional enough to make that stand. My newly nerfed life still needs to be fulfilling. (This blog is a small part of that.) So I was interested to receive a review copy of Jonathan Mead’s e-book, Reclaim Your Dreams. I was curious whether a motivational text might apply to the nerfed, as well as to the able-bodied in a rut.

There are some good lessons for us in here. I like the title of Chapter 1: “Reclaim Ownership of Your Mind.” CFSers struggle with this in a literal sense, fighting “brain fog” and other cognitive difficulties, as well as in the way Mead describes:

The problem is that our mind gets out of control. Instead of you owning your thoughts, your thoughts own you. You start to identify with your thoughts, and pretty soon the conflict in your mind is too much. It’s always judging, always brooding about something. We have all these conflicting thoughts arising in our minds, and it’s a constant battle. Some of these conflicts are rooted in accepting someone’s (or some institution’s) idea of what you can or cannot be. But most of the time, you are the main roadblock in the path to your authentic self.

Now obviously, that last sentence doesn’t entirely apply to us. We have physical problems that do present hard limits to what we can achieve. However, if you read the rest of that paragraph and didn’t recognize yourself in it, well, I applaud you, because I am definitely familiar with that battle. And chronically ill people certainly have more time on our hands to think ourselves right into a very negative space. Mead says something relevant to this in Chapter 2:

If you want to have a sliver of a chance at achieving your dreams, you’re going to need to stop caring about certain things. Mostly about what other people think, but also about what you think, as well. Sometimes the best way to solve a problem is to give up.

This is not a novel concept in motivational advice, but it struck me as especially true for us. I struggle constantly with the social stigma associated with CFS, because I don’t want people thinking I’m just lazy and useless. Of course, if I think that way, it means somewhere deep down I believe that I am, or might be, lazy and useless. We have to give up on our old definitions – and importantly, other people’s definitions — of things like “important,” “productive,” and “meaningful” and redefine them so that they fit our new lives as people with limits. They should continue to be positive concepts for us and inspire us to work towards dreams, rather than inspiring guilt and shame. Can a day spent in bed watching TV be called “productive”? Suppose you’re either recovering your energy from an activity or saving it up for one. Isn’t that more productive than forcing yourself to run around on empty?

Here’s another passage that resonated with me:

[Successful people] don’t complain about not having enough resources; they are resourceful. They don’t blame others for their crappy situation (even if it is others’ fault); they take responsibility for their response. They don’t get bitter about the hand they are dealt; they celebrate the fact that they can decide how to play it.

Okay, don’t get me wrong: I am not doing a lot of celebrating about my crappy situation and I am still plenty bitter. Let’s have no mistakes about that. However, one thing that hasn’t changed for me is the belief that we all need to take responsibility for finding whatever may improve things for us. Maybe it’s creating something new; maybe it’s cutting a toxic person out of your life. Maybe it’s as small as focusing five minutes out of your ghastly day on one positive thing. Sick and disabled people aren’t, unfortunately, entirely capable of deciding how to play our hand, as Mead states. But we owe it to ourselves to discover just how much we can do.

The practical part of the book is concerned with retraining the mind not to toss up the usual barriers to following your dreams in life. The wisdom dispensed on this topic is, for the chronically ill, alternately preaching to the choir (“push into your discomfort zone” – we have to do that on a regular basis if not daily) or not especially applicable (“get more involved in life” is a great suggestion but not to people for whom watching a movie is the maximum exertion they can manage in a day).

On the one hand, Mead’s message to focus on your dream life is an exercise in frustration for many of us. The world isn’t our oyster anymore, and it is not usually positive or constructive to remind ourselves of that. On the other hand, that doesn’t mean we should stop dreaming when we get nerfed. We have to learn how to adapt our dreams, not dream bigger.

And that alone feels like a loss to me, when I think about my life spent chasing down my dreams, and enjoying both the fruits of that labor and the labor itself. I have new possibilities to dream about, and I still look for opportunities to make a contribution, although in different places than I did before. I’m trying to be thankful for having experienced lots of interesting travels, doing all kinds of memorable things and working at jobs I loved, and to look forward to what I might accomplish in the future.

I’m trying.