The Truth

People will ask me "How are you doing?" And usually I say something like "I'm going okay" or "I'm getting better all the time." And, that's true, but it's not really the truth, at least some of the time.

The truth is, I'm not doing well. I'm struggling right now. I don't actually think the steroid treatments are working like they should. I walked into the locker room at the Y the other day and I didn't know where I was. My head feels like it's going to explode a good bit of the time now. I'm struggling to find words more than I would like. I'm having to check my calendar a hundred times a day to make sure I'm where I'm supposed to be.

But...I AM better than I was a year ago.

For as long as I can remember I have been a person who tried very hard to focus on the positive. If things were going poorly I would tell myself they could still be worse. Things can always be worse.


But the truth is that things could be A LOT better right now. And the truth is I don't know how to make them better. My MO has always been to simply focus on the positive and not let the negative pull me down. But my MO has also always been to focus on making things better.

I don't think those things REALLY go together.

Let me give an example. Say I take a test and I get a 98%. Focusing on the positive would be celebrating the 98%!! YAY! But I wouldn't do that. I'd look for the reason(s) I didn't make a 100%. To spend time focusing on that 2% is NOT focusing on the positive, especially if that 2% can't be made up or changed.

I think the truth is that I would be upset over the 2% FAILURE but I would put on a happy face and tell myself (and other people) that things could be much worse, I could be a 3% FAILURE!

There's something very disingenuous about that. To feel like a failure internally and to put on a happy face about that feeling of failure. But I don't think the answer is to proclaim failure. I am learning the answer is to maybe say "I feel sad that I didn't make 100% but it's okay"...if that's the truth. If that's not the truth then maybe spending some time working on making that the truth is a better use of time as opposed to working on ways to correct that 2%??

I'm sure you can tell I'm struggling here....and it's not the brain disease causing the struggle.

I think for me when I say "I'm doing great", I want that to be true. I recognize the truth of the statement. My situation could be SO MUCH worse that I really am doing great when compared to a lot of worse things that could be happening. But there is another very equal truth I (usually) don't say.... I'm not doing okay right now.

I don't want how I'm "doing" (my state of being) to be dependent on how I'm feeling. I want to be the master of my feelings, the master of my perspective. And, I've always held the belief that my perspective determines my feelings.

Feelings are fickle. Feelings are dependent on the circumstance. Feelings don't care that things could be worse, they just feel how they feel. Like unruly children.

That feels very chaotic and random. If my feelings determine my state of being (how I'm doing) then I can't be positive. I can't make it a great day. I can't embrace the idea that things could be worse because sometimes I feel pretty darn bad.

But what happens when a child is trying to express something and they aren't heard? They get louder and more unruly. Adults who don't understand this can work to suppress the child even more and you end up with a downward spiral that doesn't serve any good purpose at all.

Don't get me wrong, I don't think I go around trying to suppress my feelings. I just try to get them to line up with my beliefs about life. Things could be worse. I don't accept negative. I work toward being better, always. Feeling sad or hurt (or grieving over how things are not the way I want them to be) is just like that 2%...it's something to correct.

It's like there's this battle. I feel ashamed for grieving over the state of my health because I have friends who have much bigger health struggles going on right now. I feel like I have NO RIGHT to be upset over the little things I'm dealing with. At the same time I want to make those little things better and I simply do NOT know how. (Depending on who you ask there isn't a way to make them better--I do NOT accept that answer!) That causes a feeling of helplessness that I refuse to tolerate. Helpless is vulnerable.

Maybe the key is just feeling the grief I have over the state of my health and being honest that things are really not good without the judgement that I have no right to feel that way. Or maybe the key is to accept that 98% is really good and to completely celebrate how good it really is without trying to make up the 2% difference??

...The problem is that I don't really have a good perspective of what percentage of failure I'm at right now. I'm not dead so I'm better than 0%. But I'm certainly NOT close to 100%.

To not work to correct the percentage of "failure" I'm living in right now feels like giving up. To not grieve over the loss feels dishonest. I think I'm being stretched to allow both to be true at the same time. Grieve and work, but at the same time celebrate where I am and rest from all the work and grief.

A goal I've had for a very long time is to bring myself fully to life. The truth is that's complicated and messy and really very hard.

Thanks for stopping in and sticking around. I realized I didn't write about the RACE I ran in February!! I'll post a recap soon. It will be nice for this running blog to actually have some posts about running!! :D