The word “Inspiration” has been a big theme around here at the Brain Chancery, pretty much since the beginning. People have used that word in regards to this blog, and to myself, which always makes me feel a little uncomfortable, but also a little proud– but mostly a little uncomfortable. I mean all I’m really doing is having brain cancer as best I can. And it’s super weird when someone looks you in the eyes and says to your face “You’re such an inspiration!” Because sometimes, to be honest, I don’t feel like one.
The dirty little secret I feel like I need to reveal is that apparently inspiration doesn’t really come that easily to me.
Because as I’ve learned, and despite some of the more inspirational things I’ve said on here… sometimes you’re just not feeling it.
Sometimes inspiration just doesn’t come.
Sometimes you just can’t find it, no matter how hard you try.
And this is particularly hard when you need it the most.
On one level, I’ve been searching for inspiration just for this blog post for a couple of days, because a few people (thank you) have asked me for an update. And I’ve really wanted to write something. But to do that I had to… well, I had to actually figure out what to say.
I have a bunch of blog post ideas scribbled in my notebooks that I’ve been wanting to write about for a long time, ones that I saved up, so I considered using one of those pre-made bits of inspiration. So I scanned through them… but none of them felt right. They’re all good ideas, and I’m sure you’d get a kick out of each of them (especially the one where I was going to assess whether it’s better to get ebola or glioblastoma. The answer might surprise you!). But despite having a bunch of reserve inspiration right there in front of me that I’d saved for a time just like this, I wasn’t feeling it. None of those ideas brought out that spark. None of them made me want to write. I didn’t find any of them… inspiring.
Eventually I realized this is because what I need to talk about is what’s really going on with me right now, which is that I am… searching for inspiration. And not just for a blog post. For something a lot bigger than that.
At least when I realized this, I realized I had the title for this post. So that got me started– “Searching For Inspiration” was itself enough of a tiny bit of inspiration to at least get me writing. And here I am, a few paragraphs in, so that is a minor victory. I should be happy about that. I am. Sort of.
I need something more, to be honest. I need more inspiration than a blog post– I need something that’s going to get me through what I’m going through right now. Which to be quite honest, might very well be the most difficult week of my life.
It’s been a rough start to the new year, to say the very least. It’s also been a rough start to my 40th year, which began on December 28th (to little fanfare, despite my having written last year on my birthday that I really should be making a point to appreciate these birthdays, each one I get post-glioblastoma is a bit of a minor– no, major– miracle. So here goes… “Woo hoo I’m 40! Whoopty f’in Doo!“)
Anyway 40, and 2016, have both been really terrible so far. And ironically, that doesn’t have anything to do with brain cancer. Well it does, of course, because everything having to do with me now has something to do with brain cancer. After all…
No, but all of this terribleness that’s been happening isn’t bad cancer news– in fact I just had an MRI between my birthday and the new year, and it showed that all of the could-be-cancer-spots in my head and my spine looked exactly the same as they did one month before. So that’s a good thing. Things look stable with my brain chance. Another minor miracle. And that should be enough to make me happy. Shouldn’t it?
It would, but the problem is everything else. Everything else is kinda really bad.
A couple of major shitbombs were delivered onto my Cancerful head just in the past week. I’ve been feeling really wiped out, hazy– a shadow, as they say, of my former self. So I was already pretty low, and feeling really weak– definitely not ready to receive a couple of heavy blows that would knock me even lower.
First, I lost my health insurance. Then, I lost my main source of income.
The first problem, luckily, is already somewhat solved– I was able to sign up for new insurance (which is a major wonderful miracle that I’m extremely grateful for) but it’s going to take a little while to kick in. So I am, currently, uncovered. Which is scary when you’ve got a little brain chance. I had some appointments scheduled for tomorrow (including an MRI on my brain and spine) that I’ll be unable to do, and I have to put off for a couple of weeks. Which isn’t the end of the world– the most important thing is that I will be insured again soon. And nothing that crazy should (I hope) happen between now and February 1st. (I trust I won’t get hit by a bus in the next few weeks.)
But the second problem– the income problem– is much bigger, and really came out of nowhere. I don’t want to get into what happened or why, other than to say I had a good plan and enough money coming in to keep me safe and stable going forward for quite awhile, and now I suddenly don’t. And that’s a huge problem. And it has really sent me spinning.
First, it really throws a wrench into my already precarious life situation. I’ve been incredibly lucky– and have worked very hard– to be able to keep my head above water despite having a Serious Case of Cancer (S.C.o.C.), and now suddenly this little (huge) wrinkle brings my ability to maintain that life into question. And it also throws a huge wrench into the whole Cancerful plan I’ve been working so hard on. It means I might have to stop all the cancer-curing projects I’ve been working on– the things that have been putting wind my sails and keeping me inspired and making me believe that all of this might just be worth it.
I had never in my life felt like I was dealt more bad cards than I could deal with. And that includs being dealt this one:
(That’s a pretty bad card.)
But brain cancer, for me, also came with a lot of positives– a lot of love, a lot of compassion, and the inspiration to start a mission to help other people in ways I never would have otherwise dreamed of.
Brain cancer lead me to write a wonderful, cancer-curing movie, to start a cancer-curing foundation, to run a marathon by myself in honor of my hero-– it lead me to do all sorts of things with my life that I never would have otherwise done.
So it hasn’t all been bad. Some of it has been really good.
In fact, since I was first diagnosed, my motivating principle has been to try to make some good of this.
Early on in me becoming cancerful, I randomly had this thought: “Wouldn’t it be something if you could make it so that this was worth it? So that you were glad that you got brain cancer!”
When I had this thought, I found it so beautiful that it immediately filled me with inspiration. That really would be something! Imagine a life like that! Imagine what you’d have to do to make getting brain cancer worth it!
And so I did imagine. And somehow, when I did, I felt like it was possible. I felt like I could do it.
I felt inspired.
So I figured what the hell, why don’t I give it a shot.
So that has been my goal, my motivating principle, for almost four years now: To Make Getting Brain Cancer Worth It.
And somehow, I’ve been doing pretty well with that goal. For a lot of the last four years, my life has been more fun and rewarding than any of my years B.B.C. (Before Brain Cancer).
And I’m not just saying that. This cancerful journey really has been something else! I’ve seen, and felt, things that I never would have otherwise– beautiful things much bigger than myself that I would not trade for anything. In a lot of ways, it already has been worth it.
And here I thought I could keep that going– I could keep being Cancerful, and curing myself on a daily basis by smelling roses and laughing and going hiking and writing and basking in the beauty of a world that felt even more precious and beautiful now that my presence in it has a looming limit.
But the rug was just ripped out from under my feet. No, more than just the rug– the floor underneath it too. And the ground underneath that.
So now when I look down, there’s suddenly nothing there– and it scares the shit out of me. It terrifies me. And that’s a feeling — fear– that I’m just not really used to. Which isn’t to say I think I’m a particularly brave person– for some reason though in the four years since I’ve had my Brain Chance, fear isn’t something that hit me a lot.
I remember feeling a twinge of it back in Hong Kong, when the reason for my headache and the new exciting theme of my life — Cancer! — first revealed itself. Back then, in a Chinese MRI facility on a steep hill in Kowloon, the whole situation was seemed so odd and interesting that I found it kind of exciting. It was like the excitement/fear you experience when a roller coaster is about to flip you up over that first towering hump and send you flying down towards Who-Knows-What. There was a level of adventure and an excitement of the unknown that for some reason I enjoyed a bit. (I may have just been bored at the time, who knows : ) Plus I’m a writer, so it immediately felt like something great to write about. And I did. It was a huge inspiration. And that helped it not be scary.
But this new chapter, this new shit-wrinkle — and the fear I’m feeling now– is just scary. It’s just fear. There isn’t any sense of excitement and adventure that comes along with this latest curveball, just a large heaping dose of “How Are you Gonna Pay For Your Rent And Food And Health Insurance!?” This isn’t that exciting, unless it’s part of some weird game show I haven’t heard about yet but I hope gets cancelled.
And all of this just came conveniently at a time when I’ve already been feeling like I barely have the strength to tie my shoes and do a crossword puzzle.
So that’s why this has probably been the hardest week of my life. It’s a lot to deal with, on top of already having had a lot to deal with (i.e. glioblastoma, hydrocephalus, and all of the fun that comes with being a sick person.), and all of that added up together equals Too Much To Deal With! (TMTDW!)
In retrospect, it’s easy, I guess, to handle having brain cancer and to keep on keepin’ on like a total Cancerful Badass (a TCBA) when you’re lucky enough to have your feet firmly planted on stable ground. And I have been that lucky. I have been very, very lucky in that respect. Because that stable ground for me has been:
- A safe place to live, and a way to pay for it, that (I thought) I didn’t need to worry about.
- Family and friends who filled every day with love and support.
- The ability to get medical treatment at a wonderful hospital with wonderful doctors, with access to the absolute cutting edge of what’s out there for the horrible disease that I have.
- The people who have followed this blog and what I’ve been up to and have continued to express their support and give me confidence and help me believe that the work I’m doing has meaning for other people, and can actually help other people. This alone has been enough to get me this far through my glioblastomarama.
- Speaking of which, the Cancerful Foundation and the things I’m trying to do with it (Curing cancer, one moment at a time– through the Movie, the Cancer Card, the Cure My Day website, and hopefully a lot more cures) has been a wonderful, powerful driving force that not only keeps me going but gets me closer to that ultimate goal of mine: to be able to say that GETTING BRAIN CANCER WAS TOTALLY WORTH IT!
This fear that I’ve been feeling, I now realize, is really rooted in the fact that this latest set of obstacles threatens me achieving that goal. It threatens the cancer-curing path that I was on. It means I might have to stop, because right now I’m so overwhelmed that I’m just not sure how to continue. And that’s the thing that has me so scared.
I came to terms with losing my life four years ago, when I was first told that I have cancer (and not just any old cancer, but one they jump over each other to describe as The Scariest Cancer Of All!)
What I guess I haven’t come to terms with is losing the things that I am now trying to do with that life.
I think I wasn’t particularly afraid of dying before because when I got brain cancer, my life had already been pretty wonderful and fulfilling, and I genuinely felt mostly lucky and grateful for that. It was hard not to feel like I’d already lucked out– because I really had.
And then I somehow survived brain surgery, and then I survived a few more, and I was somehow able to live another day(s) and smell more roses and see more sunsets! And then I started curing cancer– and not just mine! Out of nowhere, without expecting it or ever looking for one, I suddenly had a meaning for my life!
So I was given a really nice first round of life, and then an absolutely wonderful and rewarding Bonus Round. And I couldn’t help but feel lucky and grateful for all of that. And that feeling kept me going, and it lasted for a long time. It lasted all the way up until this past week, when the sky crashed down and the ground disappeared.
In retrospect, maybe it was a bad idea to create a situation where my life could actually have some meaning. (I’m kidding, of course.) But by giving my life the potential to have meaning beyond itself, I also gave myself something much bigger to lose. And that, I think, is what has me so scared right now. I’m scared of losing everything that I thought I could make of this unexpected and wonderfully Cancerful life.
Me, I’m OK with losing that guy– he’s had an good time in his 40 years! But all this curing I’ve come up with– the movie, the Foundation– those things still have a lot of work to do and a lot of people to help and cure. But these latest roadblocks I’ve hit have left me afraid of how I’m just going to keep myself going, let alone all the crazy and ambitious and wonderful Cancerful things I’m been trying to do.
I don’t want to stop, but I also don’t have any idea how I’m going to keep myself, and all of this, going.
So there’s my latest blog update!
I’m in a terribly Cancerful pickle!
Thanks for reading! 🙂
I was a little worried about writing this post because I knew that if I wanted to be honest–and I always want to be honest when I’m writing, especially here– I knew it was going to be pretty dark. And bleak. And not that inspirational. Because that’s where I’m at right now, to be honest.
I feel like I’ve developed a certain Cancerful reputation (“Chad, you’re such an inspiration!) and talking about how scared I am and how my life is kinda falling apart is a lot less entertaining than singing a song about cancer, or running to brain surgery. I don’t want to be sad, and I don’t want to write about being sad. But if I’m being honest, I’m sad. And scared. Things really suck right now, and I don’t know what I’m gonna do.
And I was talking to a dear friend, and I expressed this concern to her, about being afraid to write because it would be depressing. And she told me that no matter what it was that I wrote, if it came from me, no matter how dark it was, it would still come packaged with some beautiful little glimmer of hope.
I was surprised by this, because I haven’t been feeling particularly hopeful lately.
But when I thought about it, I realized that she was right. There probably would wind up being some kind of hopeful twist, if only because I know myself well enough to know that I simply can’t stand the idea of a world (or a blog post, I suppose) that doesn’t have some glimmer of hope. Because who would want to be a part of that!?
And just that thought made me happy. Maybe it was even something to write about. And boom! Just like that, I had found a little bit of inspiration.
And then I was talking to another wonderful friend (three cheers for talking out problems, and four cheers for wonderful friends!) and in trying to cheer me up, she suggested that maybe this current shitstorm I find myself in the middle of is a turning point that will actually wind up leading to something good. Maybe even something better, she said.
And I knew she was just trying to cheer me up, and I didn’t particularly believe that what she was saying was true, but I also have no idea what really is going to happen, because I can’t see over this hill yet. And this is a really big hill.
And I looked at the hill, and then, suddenly, that fear that I have been feeling became like when you’re on the crest of a roller coaster, about to tumble down into Who-Knows-What.
Suddenly, that same fear that’s been tearing me up and eating me up and waking me up in the middle of the night became a little bit exciting.
Because you know what? Who-Knows-What could turn out to be something completely wonderful.
Hell, it could turn out to be the best thing that ever happened to you.
So put your hands up the air and scream, because the ride is still going.
Actually, maybe the ride is only just getting started…