I had a follow-up MRI on July 2nd. It seemed like the right time to do it since of all the immense and daunting challenges I feel up against right now, Herbert (aka my brain tumor) seems like the least daunting of them all. Plus one doc said every year for a follow up and the other said every 6 months so 9 months since the last one seemed like a good way to split the difference. So anyway, Herbert, being the most concrete of my challenges seemed the only one I was prepared to face.
I know, that’s different. I always thought having a brain tumor would be the hardest thing I face because it is hard to control. No amount of putting good into the world will stop its growth, no amount of love and commitment will stem its destruction. Despite this, even when I may not be able to control it, I can understand it. It was operated on, not all of it could be taken out because of the consequences of its precarious positioning in my body. I may have personified it to make it easier to communicate against and so I could feel my discomfort more concertedly if I could direct it at someone or something, but really, it’s not a he, it’s not funny, it’s just a thing. Unlike a person it won’t make you laugh, it won’t tell you a story, it won’t be ashamed for the hurt it caused. It unfeelingly leaves destruction in its wake and unapologetically grows. It is a brain tumor, a mass, a genetic deformity, a miscalculation in the massive mystery that is my body. It is not feeling, it is not sorry, it just is. And while that is horrible, I can make sense of it. This will grow, it is a tumor whose growth was not inhibited by surgery. I have to continue to face the rest of my life with the options of surgery, watching and waiting, and the dreaded radiation (not gonna happen, folks). I will have ringing in my ear. I will be deaf on one side. I will likely not jump or laugh as excitedly as before because sudden movements feel violent to my body. I will lose the curves on one side of my face over time (as made abundantly clear by the stoic and crooked expression of my most recent passport photo, sure am glad that lasts ten years). I will likely see a pre-surgical waiting area again. I will feel my skull opened back up. I will feel the curves of a scar. I will massage the scar tissue. I will go to physical therapy. I will have headaches. I will get relief. I will struggle. I will overcome.
It just is what it is.
I call him Herbert, I ask that he looks down at what is left of his mangled body to consider in shame what he did to the vessel he calls home. I joke that he gets wet when I swim. I sometimes yell that I can hear him. But really? He is just it, a thing, a part of me, a part of my narrative, but he is unfeeling, he is not sorry.
And he is getting fat at about one and a half times the normal rate. He is a bastard. AKA, my tumor is growing, so that small shred of me that kept hope alive that a miracle would happen and this one challenge, amidst all the other struggles, could be erased, was dashed. He won’t go away, he will live in a measurement in a list of big words I can’t understand in a 2 page MRI report I desperately search for meaning. A measurement that will try (but hopefully fail) to dictate the time I have, the time I cherish, and how long before I have to come face to face with the thing in my head. The hope that this journey could just be a chapter in the novel of my life, has been demeaned, it doesn’t exist. And oddly, I feel ok about it. I don’t need that hope to make me feel okay about it. I can understand this. It’s math, its science, it’s ok.
Recently in a graduation address, Jim Carrey talked about love, life, fear and hope. I am going to excerpt some of what he said because it has kept me from allowing a lapse in hope to become a lapse in faith. Here are some of the highlights:
“Fear is going to be a player in your life, but you get to decide how much. You can spend your whole life imagining ghosts, worrying about your pathway to the future, but all there will ever be is what’s happening here, and the decisions we make in this moment, which are based in either love or fear.
So many of us choose our path out of fear disguised as practicality. What we really want seems impossibly out of reach and ridiculous to expect, so we never dare to ask the universe for it. ”
More than ever I have realized that I have these moments now, I can spend my days searching for a promise in the future, or I can make that promise come true now, today, in my life. Who knows what tomorrow holds, I won’t waste today wondering (or at least I’ll try not to)… Back to the highlights…
“You already know who you are and that peace, that peace that we’re after, lies somewhere beyond personality, beyond the perception of others, beyond invention and disguise, even beyond effort itself. You can join the game, fight the wars, play with form all you want, but to find real peace, you have to let the armor fall. Your need for acceptance can make you invisible in this world. Don’t let anything stand in the way of the light that shines through this form. Risk being seen in all of your glory. ”
Jim Carrey then unveils a painting with a bursting beam of light in front of multiple faces, each contorted in a different way…
“This painting is big for a reason. This painting is called “High Visibility.” It’s about picking up the light and daring to be seen. Here’s the tricky part. Everyone is attracted to the light. The party host up in the corner (refers to painting) who thinks unconsciousness is bliss and is always offering a drink from the bottles that empty you; Misery, below her, who despises the light — can’t stand when you’re doing well — and wishes you nothing but the worst; The Queen of Diamonds who needs a King to build her house of cards; And the Hollow One, who clings to your leg and begs, “Please don’t leave me behind for I have abandoned myself.”
Even those who are closest to you and most in love with you; the people you love most in the world can find clarity confronting at times.”
“We’re not the avatars we create. We’re not the pictures on the film stock. We are the light that shines through it. All else is just smoke and mirrors. Distracting, but not truly compelling.”
“And when I say, “life doesn’t happen to you, it happens for you.” I really don’t know if that’s true. I’m just making a conscious choice to perceive challenges as something beneficial so that I can deal with them in the most productive way. You’ll come up with your own style, that’s part of the fun!
Oh, and why not take a chance on faith as well? Take a chance on faith — not religion, but faith. Not hope, but faith. I don’t believe in hope. Hope is a beggar. Hope walks through the fire. Faith leaps over it.
You are ready and able to do beautiful things in this world and after you walk through those doors today, you will only ever have two choices: love or fear. Choose love, and don’t ever let fear turn you against your playful heart.”
Hope is a beggar, he says, walking through the fire. But faith? I can have faith, even though, I seem to have lost my hope. Even though, Herbert won’t stop getting fat and even though the only thing I can’t control is literally the only part of life that I can understand right now. I choose love, not fear. I will dare to be seen, despite the fat ass lounging in my head.
Peace and love,
Thank you for sharing your story to the world. Sending light and love your way, Samira. Peace & love to you as well.
Thank you ❤
Samira – my 8 year old son also named his brain tumor. He calls “him” Joe Bully. I think it has helped him understand the idea of fighting against this thing in his head. That it is either him, or this tumor that will win. Both cannot prevail. Ironically, I named my blog “choose hope over fear” but I like what you said about replacing hope with faith. I am sorry to hear about the fat ass. Ugh. Have you explored the option of Visualase laser surgery? My son’s tumor was operated on 5 times traditionally, and the tumor would grow back. Now he has had 2 laser ablations and the tumor is on it’s way out. I pray for your faith to continue to shut the fear out.
Joe Bully is a GREAT name. How smart and creative of your son. I will ask my doctor about Visualase when I go in next. I’m so glad to hear your sons tumor is on the way out, I look forward to digging into your blog! Thank you for your prayers, I will keep you and your son, and his bravery and recovery in my thoughts and prayers. xo.
I LOVE LOVE LOVE the way you write! So much! Granted, this sucks rocks. I don’t know much about your tumor (or any, for that matter)…do you get to do chemo/radiation? I say “get to” as in I don’t get to do either. Mine is benign but slow growing, but the type of tumor doesn’t “mesh” well with either to help to KILL IT. I’m here with you girl!
Thanks heather! It means a lot. My tumor is also benign and slow growing, average growth is 1 mm per year, mine grows about 1.5 mm every 6 months (yay I’m above average!), but I can radiate but have chosen not to out of fear of the damage it will do to surrounding nerves. I figure we will hang tight together, the community means so much to me! and so do you!
I’m reading your post again. With fresh eyes this morning (I forgot that I read it last month? Vertigo FTW anyone?) and man. I’m just floored. I wish I could say something. Did I see a tweet or something that you do have to have surgery again?
I do have to have surgery, I actually took the tweet down because I thought there were some folks I still ought to tell in person. What’s been causing your vertigo? Can I help, I have a on of Vertigo resources! And when I finally get settled I’ll be finding a way to write about the disaster that has been learning of my next surgery, but until then I appreciate the support so so much!
Hey! We are both up! I am in the process of re-blogging your post on my blog RIGHT THIS VERY MOMENT! Come read it! 🙂 baha
Amazing! Real time blogging! And I love your tees! Great idea!
Did you see them? Can I bother you for a shameless plug? Could you RT them or something PRETTY PLEASE? 🙂
Of course! I got them on twitter and am trying to get this wordpress app to work with me so I can share here too!
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