I’m not really sure where to go from where I am at anymore. Everyday I still contend with pain, I still deal with the fact that I cannot hear. The ringing almost never stops. I still go to doctors more than I used to. I still tackle disability and ability. I still fight my body for the strength I know it should have, or wish it would have. I still make inappropriate jokes about my condition. I still have friends send me their thoughtful love and prayers. But, things are, in a sense, back to normal. And that’s the trouble (that and the fact that I started a sentence with “but” and followed it up with a sentence starting in “and” and my overly neurotic grammarian doesn’t even care to change it). Things have fallen into their old routine. A routine I both hoped to shatter after surgery and yet fought to maintain. My family has gone back to their jobs (not that I hoped they wouldn’t), I’ve gone back to school (which I am so grateful for), our concern has shifted back to Teddy (I hope he gets better!) and that is all of what I wanted, but sometimes I suppose I feel I went through all this, and no big lesson has manifested itself. No big change took place. I mean hell, I’m still a run of the mill Ph.D. student advocating for an end to structural oppression and violence and I still have a brain tumor. Now I just have a scar. A scar inappropriately hidden under an absurd shade of red hair. Yes, I said it, no Persian should have red hair. No, that’s not prejudice, it’s just fashion.
I suppose it’s the feeling of uncertainty that has me so confused. Do you ever just feel like clarity should be waiting around the corner for you and its just not? Nothing is clear, no divine meaning revealed itself. My life doesn’t seem particularly more valuable than it did before. More fragile? Yes. More precarious? Absolutely. So I should take risks and fly with the wind right? Or not, or I should be super over-cautious and shy into my studies, like I always do. It’s not that I have done nothing. Some days it takes a lot of guts just to go back to school or to run regular chores. For example, to go to the eye-doctor and when they ask, “have you had any changes in your medical history?” to casually drop in the word “craniotomy.” It takes energy to get through school work. It takes work to get through the day. My risks – though they may seem mundane to you, or even commonplace if you are one of those people who “has it all together” beyond just appearances like the rest of us, to me they were big feats of strength. Joining crossfit for one. It took a huge health crisis for me to try something new. It was scary, and each time I go I feel the adrenaline of my nerves pumping through my veins. With every repitition I fight back my tears. Even today, when the barbell got caught on my fat ponch and caused me to fall over (I know, cute) I didn’t even cry. I did an awkward snort, chuckle, snot thing and kept going. And it’s hard. And it’s embarassing. And brainsurgery? Well that just sounds like a very elaborate excuse. Going back to school. That is another triumph. I never wanted my “diagnosis” to be a secret but I also don’t want it to define me. Facing people each day, the “how are you, really” comments, while expected, and almost required do little to make me feel like I am getting better. Visiting disability services – that was a triumph of epic proportions. Visiting the center where they train hearing dogs. That was a big deal. Considering what it means to have a hearing dog, making my invisible disability visible, that was a task in and of itself. So my normal is oh so very simple, so very everyday and while it is not that exciting it’s also not that dull. That is what is so confusing. How can things seem so singularly lame and daunting at the same time? How can I define or re-define myself when I can’t think past what I’ve gone through? When will this be a thing of the past? Are all my activities, my triumphs, my struggles, are they too wound up in what I went through? Will I always have this chip on my shoulder? Will I always wonder why?
I went for a two month check-up on February 20th. All is healing “as well as expected” though I was urged to ween off of the caffiene ibuprofen cocktail that has kept me going the last little while in favor of plain old, simple healthy living. I did have to get a chest x-ray because of a deep cough and residual tightness in my chest, but it is purely a “prudent precaution.” As I told the tech that took the x-ray, “last time I was here you found a brain tumor, so I’m kinda paranoid.” He didn’t blame me. The x-ray aside, the coffee and cookies in the imaging center were enough to convince me to come back again anytime. It’s the small stuff right?
One thing that has happened since surgery is my inability to take crap (well, let’s be honest, I’ve always been a bit of a softy so I take less crap). Whereas I always talked a big game about things I say or would have said, most of my tough girl responses fall into the latter category, at least they did before surgery. Things I wish I would have said, but didn’t have the balls to say. Now I say things, I am still super apologetic in the aftermath of asserting myself but I’ve found less of an ability to just get pummeled by the people around me. I have good things to say, and I’m not crazy, so I’m going to say my piece (sometimes, and with caution). Look, I’m a work in progress, ok? When I was in the doctors office the nurse asked me the standard question, “do you ever feel sad, hopeless or depressed?” And although just the night before I used the exact words “sad and hopeless” to describe my mood, I said this to the nurse:
“Eeeeeh, mmmmm, no. Nope. Yea, let’s go with no.”
But what is profound is not my ability to lie to myself and a nurse in a very unconvincing and pathetic way, it is that I had to interrogate why I felt that way and why I felt so deeply ashamed of it. Sure, because life is not fair and I got a brain tumor, and I like to hear things, blahdy blah blah. Really though? I just want control back. Being sad interrupts my control freakery. I want to be the arbiter of my own destiny and it is a messy road figuring out how to do that. I want clarity. What I was forced to confront is NO AMOUNT OF ANESTHESIA BRINGS CLARITY. Why I assumed life becoming marginally more complicated would make things more obvious I’m not sure. It’s a hot mess. HOWEVER (just a fancy but), what I discovered is I like it that way and it really isn’t that bad. It’s just not. It’s pretty interesting. And look, I understand my brain better than most of y’all. I mean what the hell would I talk about if things were all willy nilly, happy go lucky? My confusing search for clarity? It led me to one thing: gratitude. I am grateful for the big stinky mess I have been handed, I can get through it and I think I can even de-stink it. I am thankful for the people that walk with me as I muddle through. I am thankful for one working ear. I am thankful for my Ph.D. program and the continual support of colleagues. I am thankful for the people that don’t treat me like I lost a part of my brain (Herbert was in the empty spaces around my brain!) I am thankful for friends who go out of their way to eat pie with me. I’m thankful for pie. I am thankful that I get distracted by my school work to the point that I forget, I forget all of this and aspire towards a greater goal. I am so grateful. For all of it, even the shit. Which is not an easy place to be. Gratitude is exhausting, it takes your energy and spreads it thin. I think it’s worth it though.
One of my favorite songs is by Mat Kearney called “where we gonna go from here” (Check it out! http://www.youtube.com/watch?v=uOGjHFHackc). It’s a song about a journey, it’s nostalgic yet forward looking. It’s pensive but its powerful. It’s how I feel. I don’t know where I am going to go from here (not actually, tomorrow I’ll go to school and I’ll love it because I love school and then I’ll come home because I genuinely love my condo – I’m talking metaphorically….just making sure we’re on the same page). I don’t know where I am going to go from here, meaning, I don’t know what my life will be in two months, two years, or anytime in the future. What I do know is I am living. I am taking my risks, I am getting better. I am fighting back. It may be boring, my victories may be small but they are mine and I am fiercely proud of them. So where I end up? No one knows, least of all me. And that my friends, is totally okay.
As always, peace and love –
Great article, big thanks for sharing, sincere regards, Barry
NB no one knows where you’ll be because no one will ever know the path that you’ve walked.
How do I know that? well, no one will ever know the path that I’ve walked through my many diseases, the isolation, the pain, the suffering, the despair, the this can’t be happening to me, the why won’t any one help me, the people he walk on the other side of the road to avoid me, the people who stick the boot in when I’m down, the dreams I never realised, the hopes that were all dashed.
And yet better am I and the better are you for being brave enough, strong enough and true enough to yourself, to keep fighting and loving when all appears to be lost.
Take a bow and tap into just who you are, and when you do smile and say; blimey I’m magnificent aren’t I………!
Have great day, sincere regards, Barry
Thank you for your timely comment. I really appreciate your sincerity, encouragement, and honest sharing. To see your feelings of isolation and your relentless fight in just your few words has inspired me and your timing is impeccable. I’m grateful you shared with me. I don’t know the path you’ve walked but I am certainly glad it crossed mine. With great respect – S
Few will ever truly know how powerful you are save for you and those who’ve walked their own road of bones like you…….!
Big smile on my face for your generous feedback, and hope there’s a big smile on your face now too 🙂
Sincere regards, Barry
Thank you for sharing this!
Keep on keepin’ on! I promise you it gets better. 🙂