I recently thought I had made progress on the emotional side of healing. The physical side, well that was a mess, and my CSF just can’t seem to want to stay in my body so we do what we can do. And I secretly hope that Herbert hasn’t grown and I hope and hope that one day I can live a life like the happy people you see in magazine ads, the ones that don’t seem to have brain tumors or problems, or stress (or body fat). Through various events, let’s call them set backs, I felt like my emotional progress was, well, set back. For the first few days I was so mad and busy being victimized by it that it didn’t really do much. It was a “how dare the world steal all the progress I had made?! How dare it rip away my proclamations of healing and replace them with wounds and scars and well, crap” kind of moment. I know, that’s a very specific kind of moment. It was a moment that allowed me to be loudly indignant with tears bubbling up in my eyes (and dripping out of my nose because my whole face is just all jacked up). After I realized I was partially responsible for my setbacks in my inability to handle anything at all, I then got really down on myself. It was a “if you were just a bit stronger, louder, more able to speak your mind, maybe your life would be less of a shitstorm” kind of moment. Again, I know, specific. It was a let me shine my insecurity on you because I don’t know what I did with my light. Then I realized that that is all bullshit and that no matter what you do right or wrong often forces in the world, structures that have been built up, are too big for us to dismantle on our own. Sometimes we can’t know if we dripped spinal fluid on a stranger. Sometimes things are too big for us to break down. So we can slam our poor, reconstructed skulls up against them until we break, but very little will change. It doesn’t serve to blame yourself. I didn’t do this to myself and while I didn’t not do this to myself, feeling like a loser gets me nowhere.

So now I am in this moment. It is not a really fun moment. It’s a “life got hard and it took your energy and you feel listless while alone but need to regain the strength to survive mentally and physically and emotionally in your own home even though it is hard as shit and you just want your mommy” kind of moment. I know, it’s just so specific. And it’s so problematic. I want my support system but I want them to do what they are doing, enable me and support me as I struggle to my own two feet. I just don’t really want it to be hard. 

And that’s the thing about progress, it’s up and down and back and forth and there can be no forward with no backward. Life got hard. That does not mean I am not blessed, because I know I am. I have resources and friends and just the most beautiful family. I am drowning in blessings. That doesn’t change that this moment — the mysterious nature of recovery, not knowing if you are sick or well, having lost an emotional core of yourself, not fully being able to name who you are — is a difficult moment. 

Last night I was lucky enough to see my Mommy (yes I am emotionally 3 years old right now) and my sister and her kids as they brought my little pups home to me. We had pizza and watched TV and at the end of the night, as my sister was begging her kids to get ready to go, they begged to stay with me. With me! Messed up, often too tired to play, broken-hearted me. Every time they want to be with me it fills me with joy. As she left my niece threw her arms around me and said, “Mimi, I love you.” I told her I loved her too. “That’s because we are best friends,” she replied as she put her whole head into the hug.  

So I have those really really beautiful moments to give me hope when it just feels really hard. I have my little best friend and a lot of really amazing people cheering me on. And yea, I backslid in my progress and my face is still leaking, but going backward just makes me know how badly I want to go forward. You see when life gets hard it’s a hell of a lot easier to give up than not. But every day I wake up, look at my pups and the pictures of people I love all around me, I catch my uneven but strong eyes in the mirror and I choose to live. Even when living means quietly trudging through the mud until we figure out how to pull ourselves out of it.

Peace and love,

Samira