You Will Always Have Been Here

I’m tired.

But this time, it isn’t from chemo.  Or radiation.  Or having my head opened up and fiddled around with for a third or fourth time.

This time, I’m tired because I’ve been working.  Hard.  Building something.  And this kind of tired feels good.

Building something feels good.  It feels good to make something; something that you can turn around and look at, and with deserved and uncomplicated satisfaction think to yourself:  “I did that.  And that is good.”

The thing you make can be as simple as a bouquet of flowers, or as complex as turning your friend’s garage into a guest house.  It could even be as high-falutinly aspirational as a feature film about cancer, or a not-for-profit charity Foundation dedicated to making that film, and helping people with cancer.

I actually worked on building all four of those things today.  And I completed two of them.

And that is why I am tired.  And that is why this kind of tired feels good.

I’m tempted to wonder why this “building things” impulse satisfies us… whether it’s just another one of our vain (and vain) attempts to disprove our own mortality– to make something / leave something behind that gives us permission to think “Yes, see, look at that!  I made that, and that is bigger than me!  That’ll last longer than I will!  Because I am afraid– I am oh so afraid — that I am not very big at all, that I might not last very long at all.”

I am also tempted to stop wondering about things like this.  And I suppose you are too.  And so I’d like to revisit something that I wrote about briefly… something that occurred to me when I was in the middle of an “oh my god I’m gonna die what the hell am I doing with myself I didn’t enjoy today enough did I enjoy today enough maybe if I stopped worrying right now I could be enjoying today more does any of this have any meaning anyway oh my god I’m gonna die what does all of this mean” kind of moment.

So I was thinking something like the run-on thought above, and then suddenly, some calmer, far more mature (and probably better dressed) version of me crept up to the plate, and he put his hand on my shoulder, and he said something to me.

And this is what he said:

“Dude.  Calm down.  You’re not always gonna be here.  But you will always have been here.”

And then I paused, and I thought about this.  I thought about something I had just said to myself.

“I will always have been here.”

“Yeah.  You will always have been here.”

“I will, always, have been here.”

“You will, always, have been.  Here.”

And then a wave of calm came over me.  Because I realized that there’s an indisputable truth to this thought.  And this truth carries with it an indisputable answer to The Biggest Fear There Is:  the fear of death.

You will die, but there is nothing impermanent about you.  Because you will always have been here.

The only question that’s really worth asking is this:

“How were you?”

bouquet

I’m happy to say that today, I was good.  Today I made a few things.  Some big, some small.  Either way, I will always have done that.

And that’s good enough, for today.
That, I suspect, is good enough for most days.

It might even be enough for all of them.

 

 


 

UPDATE!
(Since this blog was originally conceived as a means of Updation, here’s the latest, in brief):

• Brain surgery #3, 3 months ago.  Successful.
• 1st MRI after surgery showed some stuff.  Could be cancer, could be healing tissue.  Only way to know is wait and see.
• Started on new clinical trial (immunotherapy vaccine, similar to the last one.  Who knows if it’ll do anything, but having the option at all is very, very lucky).
• Latest MRI (2 weeks ago) showed same stuff as previous MRI.  Said stuff is not growing.  Which means it’s probably not cancer (if it was cancer, it would be growing).  This is good news.
• Feeling relatively good.  Working on things big and small.  Extremely grateful to be able to do either.
• Next MRI in 2 weeks.  We’ll see.  This is how it goes.
• It goes!  Hooray for that.  Above all, hooray for that.
• And I’ve got work to do!
• But I am tired.
• I’m gonna get some sleep, then get back to work.
• (In between those things, I think I’ll have a nice breakfast.)
• Good night!

12 thoughts on “You Will Always Have Been Here

  1. This brought a tear to my eye because it’s true – we are all afraid to die. But some of us have to deal with it sooner than others. What a great way to express it and know that we do all leave a legacy. I always appreciate your insight – not just into having GBM – but about life in general. Cheers!

    (Btw: my dad has GBM and his last MRI reads the same as yours – can’t tell if it’s tumor or radiation stuff and we are on the same wait and see approach. I hope your next MRI is stable.)

    Sue

  2. Yay for making things, and yay yay yay that you are here, and that in one hundred years, you will have been here. Also, yay for good breakfasts- we should all strive for them, if we possibly can.

    Sending powerful thought waves to your resection site to scare any stray cancer cells into cowering civility, and to welcome the vaccine cells to the site of their new, hopefully very successful, gig.

    peace and love,

    kathleen

  3. So good to hear from you again. I am picking up the “tired” comment and I would like you look at it this way. It is the creative side of you which is brilliant. Whether you make an object or complete this blog, it’s all creativity.To turn a thought and then carry it through it shows your brain is still working. So I hope this will inspire you to carry on getting TIRED!

  4. Have been following your blog since it’s inception. Can’t remember why I started reading it as I have never had a brain tumour or known anyone with one. Then It dawned on me . I read this because it’s about dealing with adversity, overcoming obstacles, triumph of the spirit and so many things that we take for granted everyday. For you my friend you take nothing for granted. You have taught me so much and I wait eagerly to see the latest instalment arrive in my inbox. I admire you so much but above all I love your sense of humour. I am similar to you in that regard always looking for the lighter side. I have gone through alcoholism and that is a life long battle. One I may never win. I think I have the biggest MAN CRUSH on you. In a complete hetero way. I wish you so much joy and happiness. Continue looking for positives even in your darkest days. But above all KEEP WRITING. And if sadly it gets to a point where you no longer can, dictate your thoughts to someone. Your mate from OZ.

  5. I loved this post Chad. So true you will always have been here and I like to think a step further no matter what you will always be. Maybe not on this physical plane, but somewhere. We never die we just move on. I like what you said so why worry if it’s today or tomorrow or years from now. What a waste of time that is. What is important is what you said how did I use today. Did I accomplish anything? Even if it was to rest because that is what I needed most. To me worry is greatest waste of our time in this life. So when I start to do that I stop and re-direct my energy to something productive, as I said even if that be to rest. Love You Cuz

  6. I’m such a neophyte in the BLUE world of people living with GBM. I was just diagnosed in September 2014, and I’m beginning week 5 of radiation/chemo. I avoided searching the internet at first because I found the statistics so disheartening and unhelpful, but I’ve recently become braver and sought out voices like yours. Thank you for expressing so much of what I’ve been feeling – for giving me hope and perspective. I started my own blog mostly to update family and friends, but it’s turned into a form of therapy, I guess. I hope you’re not scared away by online persona – It helps me feel empowered. I pull the brain cancer card for all the cussing.

  7. Thanks for sharing such a beautiful insight / thought with the rest of the world. Whenever I’m frightened, I will try to remember those words – ‘I will always have been here.’ And I’ll try to remember the most important question – ‘How were you?’

    I hope you continue to beat the odds. Blessings to you.

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