I’m havin’ a real hard time

getting through this.

I’m having a real hard time knowing where this is going.  Figuring out how I’m gonna get there.  Trusting that even if I do get there, that there’s something waiting for me on the other side.  (And I’m not talking about death, I’m talking about life.  About being on the other side of what I’m going through right now.)

If you’ve seen me or talked to me recently and I seemed like I was doing well, that’s because I was happy to be around you.  I was happy to be talking to you, to be looking at you, to be discussing something or laughing about something.  To not be alone in my head thinking about how hard of a time I’m having.

Because most of the time, when I am alone, it’s hard, and I’m not doing well.  Even though technically, statistically, I am doing well.

For example (1):  All of my hair has grown back, and my body is as strong and healthy and functional as it was a year ago, before all these shenanigans beganigan.  I can still see and hear and smell and feel and move everything pretty much the same as I used to be able to.

“That’s great!” you say, and mean it.
“That is great.” I feel, and mean it.
It’s really, really fucking lucky.  As I said: technically, statistically, I am doing well.

For example (2): The results of my MRI on Tuesday were good enough that my doctor expressed what could fairly be classified as untempered enthusiasm.  He even said something like “We don’t see results like this very often!”  He was optimistic.  Excited, even.

“That’s great!” you say when you hear this.  And you mean it.
“Eh.”  I thought, when he told me.   And then I thought: “Wait, why am I not at all relieved right now?”
I wasn’t relieved at all.  And I’ve been thinking about that for the last two days.  Why was I not more relieved?

Because it doesn’t really change anything.

I’m still having a real hard time.

If you’ve seen me lately and you said “you I look great!”, and I laughed and rolled my eyes, or looked sad and told you that I don’t feel great– that having my hair back and being tan is no indication of what’s actually going on on the inside– then I’m sorry.  I’m sorry for not just being gracious and saying “thank you.”  I’m sorry for making you feel uncomfortable, or making you sad.  If I did that it’s because I feel sad, and sometimes I guess I just need to not be alone with that feeling.

I’m sorry for not being more grateful that at least I look healthy.  Because I know it makes it easier for everybody else that I don’t look like I’m dying.  It makes it easier for everybody else to be hopeful, and supportive.  And I should be thankful for that.  Because I want it to be easier for you.  I don’t want to be a burden.  I don’t want it to be hard for anybody but me.

But the reality is that looking and seeming alright— that actually makes it harder for me.  It leaves me feeling more isolated— even from myself.  It reminds me of this person that I want to live up to, for you and for me, but I know full well that I can’t.  At least not right now.  I just can’t.

When I look in the mirror I think what everybody else thinks: “Hey, that guy looks like he’s doing alright!  Look at that hair!”  But then that thought immediately bounces– hard –off of everything else that’s going on inside.  Which is, among other things: fear and disappointment and frustration and sadness.  And fatigue.  Oh god, the fatigue.

I’m sorry for needing to point out that I don’t feel great.  I’m just having a hard time right now.  And it’s mostly– no it’s all –in my head.

I don’t think I’m depressed– if you walked in here right now in a clown suit or a Lincoln costume, I’d laugh really hard and mean it.  The laughter would come honestly and easily.  And it would come as a great relief because laughter is one of the few things in my life that remains uncomplicated.  And it’s one of the things that always– always —makes me feel better.

I’m just tired.  Most of my energy is being spent these days just trying to think my way through these days.  Trying to out-think the worry and the fear and the frustration (above all the frustration!)  Trying to think of nice distractions that will be easy enough for me to take on, and that will offer enough honest reward that I will feel like I’m enjoying myself, that I’m getting something out of the day.  That I had a good day.  That I’m living my life.

That doesn’t leave a lot of time or energy for shopping, or cooking, or working.  Or for writing, which is all I really want to be able to do.  Which, thank god, I’m doing right now.

I’m just getting so much less out of my days than I used to be able to–than I still desperately want to be able to–that it leaves me deeply frustrated, and disappointed in myself.

Hopefully this will all change soon.  But lately, it’s just been getting worse.  And that’s why I’m having a hard time.

My brain is just tired.  It’s tired from all the fighting.  It’s tired from all the healing. It’s tired from having so much hope and then having so much of that hope torn away and thrown into a waste bin at the worst possible moment.  It’s tired of thinking about that.  It’s tired of being hurt.  It’s tired of feeling sorry for itself.

Above all else though, my brain is tired from all the shit I’ve had to put it through to keep myself from dying.  Make no mistake: I’m glad I put it through all of that shit, because it’s the main reason I’m still alive right now.

I am still alive.  And technically, statistically, I’m doing well.  I’m just having a hard time.

All I want to do is to do something meaningful– to write something meaningful –and a few months ago I was doing exactly that.  But then I was forced to stop, and all I want to do right now is to get back at it.  I’m just so tired and so afraid that I’ll never wake up fully enough again to pull it off in the way that I dreamed I could.  In the way that I still know I can, if I can just summon enough energy.

If I can just stay awake long enough.

If I can do that, then it will all have been worth it.

I feel like I should go take a nap.

I really, really don’t want to.

I want to be awake, and alive.

I think I’ll go for a jog instead.

10 thoughts on “I’m havin’ a real hard time

  1. This blog alone is something meaningful, especially to anyone who has battled cancer but have never been able to articulate what it is like, even when things are better. Touching someone’s life and/or making a difference has little to do with quantity and much more about quality. I read every one of your post because you articulate much of what I can’t and help me to realize I’m not alone. While I am out of the woods for now, that sneaking fear that something could come back is always there, along with the feelings of wasting a day when I’m more tired than I used to be. Your writing strengthens me and reminds me that my experience isn’t something I experience alone. And while I wish neither of us had to deal with this stuff, I am reassured I’m not alone. Your blog reminding me of that is worth more than thousands of words in a novel or a 110 page script.

    I wish you continuing recovery and strength and an improvement in your energy and thank you for being no only willing to share, but being an amazing writer who’s able to say the things many aren’t capable of.


  2. Once again, your exquisitely articulated thoughts blow me away. My friend’s daughter, a composer and singer, was recently told she needs a double lung transplant. She’s not going to do it, not wanting to live that life. She started blogging about her experience. I keep wondering if you two should know about each other. Her husband gave her a bell to ring every time her thoughts go to a dark place, to short-circuit the ruminations. I thought that was a good idea. You’re way past that stage, I imagine. Do you have any interest in reading her blog? I apologize in advance if that is a bad idea. Just keep thinking about the two of you…


  3. You have been through more in your first few decades than most of us will ever experience. I am convinced that when something tries to take you out, it is because you have something amazing and life giving to contribute. Such contributions defeat the emptiness that threatens to swallow life as it was meant to be. No, I don’t know the secret to life, but I suspect that it has something to do with the pursuit of the answer to this mystery. Perhaps it is the quality of our pursuit that shapes the adventure for each of us.

    I am glad that you want to write. I love words. I think of them as containers for the treasures, the priceless jewels of our hearts and minds that reside inside of us. We can only smuggle them out in these containers called words.

    Looking forward to your next post,

  4. One day at a time. Sometimes it has to be one moment at a time. It’s all you have at any given moment.

  5. Thanks for sharing your feelings and I’m sorry you’re going through a tough time right now emotionally. Whenever I go through times like that (going through one now), I try to take time to heal (as you’re doing – and sleep as you need the rest) but I also try to be with good friends and family. I believe salvation comes through other people and relationships. They help us grow and think of things outside of ourselves and our own needs, fears and shortcomings. Sometimes we’re our own worst enemy and while it’s good to be alone, there are times when being surrounded by love, laughter and healthy distractions are also good. And when I don’t have anyone around, I turn to movies…I don’t even want to tell you how many times I’ve recently watched When Harry Met Sally and Love Actually since they’re all I have in my dvd collection!

  6. This was such a great post. I know exactly what you mean. I was able to cover up my bald spot after surgery, and I didn’t do radiation, so I got to keep my hair. As much as that was a blessing, it was also a curse. I didn’t look sick, so I shouldn’t feel sick. That was so rough. Even now, four years later. I still deal with long-term side effects, but I look fine on the outside. It’s a rough life.

  7. Have only just stumbled upon this blog but it was just what I needed. You are inspiring, you have the best attitude, and you are so strong for how well you have tolerated FIVE brain surgeries! My partner was dx with a high grade brain tumour 7 months ago and reading this blog has made me feel a bit better. And that matters alot to me. Thank you for that.

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