Three weeks out, living without Herbert?

I’m three weeks out from my surgery. It’s funny, I thought once I had surgery the counting would stop. I was attached to a calendar leading up to surgery, I counted down until the moment I was sitting all alone in that hospital gown in that cold pre-surgical bed. Now I count the days of healing, thinking when I hit that 6 week mark normalcy will somehow return. I think when I hit 6 weeks I can have my life back. My days will no longer be consumed by concerns of cerebral spinal fluid leaks and pain management. At 6 weeks I won’t have to wonder if I’ll need steroids for swelling. At 6 weeks I can work out again. At 6 weeks I’ll feel normal. At 6 weeks I can be fearless. At 6 weeks I will stop being in convalescence. At 6 weeks I’ll be Samira again, not just a walking brain surgery recovery. I know that I’m wrong. At 6 weeks what will really happen is that I’ll find out how much hearing is gone, if I’m recovering normally and what to do next. At 6 weeks I have to retrain my body to be strong. At 6 weeks I have to figure out how to shift from being in recovery to being someone who lived and will always live with a brain tumor. Herbert is, for all intensive purposes, a stubborn ass.

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Alas, what can I do? This is my life now. That’s what I tell my family when they are embarrassed of me doing my vestibular exercises as I walk the mall like a senior citizen out on their weekly field trip. They can get embarrassed all they want. I don’t have a choice but to wear my Herbert on my sleeve and make a big joke out of him. If I didn’t? I’d crumble under his weight. I’d crumble under the pain.

You see, each morning I wake up in the bed saved for me and my family’s home. I’m taking advantage of my last week of winter break before I gave the terrifying truth of going to school while still “recovering.” Each morning I think it will be different. Every evening I go to bed thinking, tomorrow will be better, I’ll get up, walk for an hour, shower, get dressed, write that lingering paper and get out of the house, maybe sit in my favorite coffee shop. But each morning I wake up, not to my alarm, not to my loving mom and dad offering me pancakes and tea, but to pain. Throbbing, aching, every muscle engaged pain. I wake up in pain. My jaw clenched. My body is bracing itself against the pain. Preparing for an even worse attack. It’s like seeing the shadow of an attacker in the moment before an attack. It’s too late to escape so you tense up, you brace, preparing for impact. Danger is imminent. Then, it’s happening. All you can do is fight for your focus. All you can do is breathe.

So, to avoid getting bogged down by that and the ever present fear of a csf leak, the incessant taste of metal in my throat and the dear creeping in that I’m going to look like a fool come spring semester when I cringe in pain randomly in a room full of my peers? I joke. I wave my freak flag higher than it has ever waved. I shop. I shop online. I focus on work. Applying to conference after conference trying to give myself something to look forward to. I dream, of Hawaii. In reality I’ve given up all pretense of working towards some kind of ideal future. I used to think of marriage and family, career and volunteering, staring my photo advocacy L3C business. Now? I dream, but I don’t expect those things to happen. Instead I focus on each day in minute baby steps.

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I look not to all my tomorrows but to just tomorrow. If I can do today I can do tomorrow. I can even dream of success and happiness. I can dream it but I don’t expect it. Because I don’t know what will happen. In 6 months, I’ll get Herbert checked. I’ll see how he likes his remodeled home. And maybe he’ll have tried to expand, maybe not. Maybe he’ll have withered, I just won’t know. He’ll be hanging over my head forever through. I can hear him, right now, ringing in my ear. Ass.

It’s like there is a shadow hanging over me. Like everytime someone says , “I’m so glad you feel better” I think great, good for you, you don’t have a big tumor shell sitting on your nerves. You don’t have to worry about this FOREVER. I do. And honestly I feel worse from the wear. That doesn’t mean I’m not grateful for you, being happy, celebrating my success with me this far. It just means I’ve tempered my expectations of what feeling better means to me. Keep cheering for me though, I don’t even want to think about where I would be without all of you.

It’s been three weeks, and yea I feel better today than I have so far. And yea I see light at the end of the long long long tunnel. And yea, I do think this whole mess is kind of a big prank on the part of the universe. But sometimes, just sometimes – not often and it passes quickly- I’m angry. So pissed. I cry out to the Heavens, why me???? I have heard from several people something to the effect of For whatever reason God chose you to give this challenge to, because he knew you could do it. While I can sort of understand that logic, it really does very little to make me feel better. God chose this? God chose for a cell in my body to mutate incorrectly? Frankly it just seems more like a mistake, an over sight. If it was purposeful, pardon my being blasphemous, it just seems kind of rude. It would actually make me feel better if instead of thinking God did this purposefully, we think that perhaps God just got tired and made a mistake. If God is created in our image and we are capable of mistakes, shouldn’t God be? I don’t know. It seems like a bad justification to explain away the ugly in the world. I work on issues of rape and violence around the world, I’ve devoted my life to understanding it. It doesn’t seem right to simply say, God chose those women to have a challenge. It’s not a challenge, it’s a mistake. That doesn’t mean that I won’t rise up and try to learn whatever lessons the world or universe or God is trying to teach me with each and every experience good or bad. I will and I am. I am learning. I guess I just don’t understand, I’m not surprised though. Faith really is a strange enigma to me.

Anyway, three weeks and despite the moments of doubting the universe and why me, I’m happy to report I am making progress. My mother helped me get situated at my condo so that when I return to my home at the end of this week to prepare for school and work, I am ready for business. I laugh everyday, I enjoy valuable time with my family and I am fighting this with all the bravery I can muster. I’m grateful, I’m happy to be alive and ready to make the most of this. In the words of myself, “I got this.”

Peace and love –

Samira

Update: Immediately after posting this my phone rang. It was a woman who is a friend of a close family friend who had also had her surgery at Barrow. She was the first person to really level with me about getting brain surgery. At the end of our 38 minute convo I tried to express my profound gratitude. She told me that she is grateful to have found me because it explains to her one reason why she may have had o go trough what she went through. So she could help me. Maybe it is all connected as part of some kind of master plan. Who knows, but thanks to all of the amazing people who reach out, I feel calm and confident as I face my recovery and if you, any of you need help, love, someone to complain to. Just reach out.

Xo

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2 thoughts on “Three weeks out, living without Herbert?

  1. This is incredible. A very well-timed #braintumorthursday post! I know SO much of what you mean! And you know what? I just hit my year mark in July of last year and I’m still struggling with the “time” factor. Did you make an adjustment with the pain meds? HANG IN THERE. I promise it gets better.

    • Thanks Heather! One year! I am so amazed by you! I did call the doctor, they told me to drink caffeine and amazingly I feel so much better!!! The pain is a lot more manageable. Thanks lovely!!!!

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