I hadn’t been able to talk about it much in the first two weeks after it happened, that fifth surgery. At least not without doing so flippantly, not with most people. I felt immediately better when it was over, the anesthesia was gentle, the doctors adept, the process straightforward, but I didn’t talk much about that day itself because it was one of the hardest days I have ever endured physically and spiritually. When the surgery was over I felt healed in my body and knew that in time my heart would follow suit (still working on that one). I was able to speak technical details to people about what happened and when, at what volume, and why. I told them about the procedure and about my pain levels. I was able to provide details about CSF, how much was leaking, the sensation of fluid leaving your body without cause. It wasn’t until I returned home, to my own home, in all its beauty and isolation that I truly realized what I was leaving out of that description of that day: it felt like dying.

In the last few days I have said it out loud to my family, to my family of choice too. I have said it and the words rang hollow. It felt like I was dying. It felt like my body quitting, screaming that enough is enough. It felt like my spirit saying, “hold on for the one’s you love, just hold on.” I told people, I kept saying it, feeling like maybe I had to convince them that this wasn’t the dramatic flair of an overtired and melodramatic woman, this was how that day was. I felt like I was convincing myself, so I didn’t lose that feeling because I knew, in those moments of total resignation, there was something to learn. Something to uncover.

I remember thinking, call the people you love, let them know you love them.

It felt like dying.

The thing about it though, is I don’t know what dying feels like, not in any real sense. I know surgery, I know pain, I know healing, I know coping. I don’t know dying. What I do know is the construct of what death is. Death is suffering, death is letting go, death is leaving this world and releasing your spirit. It felt like my body could take no more, but in a way, I knew it wasn’t my time. It’s just that when you get sick enough, when your body endures a lot, the fear becomes greater than anything and it clouds your ability to fight for your own value in life.

Fear can be such a challenge. Since my surgery my fear has been replaced with acceptance. I accept the state of affairs. Herbert may have left a little chunk behind, you know, for posterity’s sake. Flo hasn’t completely gone either. So they may continue to persist and if they do, I accept that I will have to deal with them. It won’t be easy, it may not even be fun, but it will be within my ability to deal with it. My body has endured, my body will endure. So I don’t fear that CSF that drips out every here and there, until it pours I will stare it down.

My fear started to shift that day, that day of the fifth surgery. I just am starting to discover that, but my fear shifted that day.

But first, it had to take over.

After I was sent home from that grueling day in the ER, I was just happy to have sandwiches and get to have a celebration of many members of my family who were celebrating birthdays. The leak was persistent but manageable, though aggressive enough it couldn’t be left alone for too long.

After a happy night I went to bed, even saw a friend and ran errands the next day. Perhaps it was too much too soon. Perhaps illness just takes time to truly show us its full force. I managed to get a cruel GI bug and spend 2 days sick, vomiting. With every trip to the bathroom I feared infection. Was it meningitis? Was it something worse? It was, as it were, something routine, but it had combined with my CSF leak rendering me weak and lifeless, scared and frustrated. I spent night after night texting my siblings looking for comfort. I spent the early morning hours looking for on call doctors to comfort me. They all told me it is going to be ok. I knew that. I just didn’t know when or how. I even got a house call from a benevolent doctor telling me how to get my strength up for surgery. I overheard her telling my family that I can’t see it now, but the weakness will dissipate, I will heal, and this will be a distant memory. Probably true, I thought, and maybe that helps my parents, but for me, not entirely helpful (though I appreciate the sentiment and the urge to comfort my family). Sure, if we are all destined for long, happy lives these moments do fade, leaving tracks but becoming memories. We heal and we move forward. Time is a healing force. Time is also a stupid asshole. We don’t know how long and how happy our lives will be, and that’s not a complaint, it’s a fact. We don’t have a guarantee that our worst year may not be our last. We don’t know. So as someone who tries (and often fails) to remain in the present, enthralled in my life good or bad, those days were shitty (literally and figuratively). Somehow I survived, with a tissue up my nose, to Thursday, it had been 5 days since they sent me home from the Emergency Room, and over those days my leak worsened and worsened.

Wednesday night I remember laying flat, no pillows, just flat. “If you have a CSF leak, lie flat,” those were my instructions. The assumption was that if you are lying down flat and your body leaks out too much CSF, being horizontal on the ground will allow your body to equalize the pressure. My body is a moron though, so it made MORE CSF. Then, it made more CSF. Then after that it was all, oh hai, I think I’ll make more CSF. I got sicker and sicker, the CSF draining into my stomach, making me nauseous and cranky. The drainage from my nose was now so aggressive the overflow was coming out of my mouth, I wasn’t even sitting up or bending forward, my shirt was wet, my pillow soaked. When it hit my throat I would choke. By the time I woke up Thursday, by the time I made it to that day, I was lamenting in tears that the doctors should not have sent me home. I cried to my mom, “it’s too much, it’s too much.” I vomited CSF. I cried. The pain was blinding me and I writhed around in my bed wishing, hoping for a reprieve. I emptied tissue box after tissue box with this relentless fluid. I got up, I had to make it to the hospital, I had to get there. They had to fix this. I needed them to fix this. I remember struggling to shower and seeing my face in the mirror. I was unrecognizable to myself. I was pale. I tried to smile at myself and it fell flat. I called the hospital, urging them to let me come earlier. The nurse told me, “if you’re too sick we can reschedule the surgery.” Multiple people had said that to me in the days I was home waiting for my surgery and each time I would scream out “NO!” I needed help and I needed it now.

I had reached my saturation point with the leak (pun intended). I felt like my head would explode. The pressure was intense and so painful. If I was going to live, I needed help, because this shit felt like dying. It was my fear that helped me realize though, I had to accept this, whatever this ended up being. I didn’t get a choice, and blady blah it was unfair. Ok so what? It’s your hand, it’s been dealt, freaking deal with it you giant baby.  My fear reached its pinnacle when one of my dearest friends called that morning. She heard it in me, the fear, the frustration, the giving up.

“Sami, are you ok?” She asked me.

I couldn’t not cry, I kept gagging on CSF, “I’m so scared,” I told her. I told her I was scared I couldn’t make it, that I wouldn’t make it to my noon check in time at the hospital. How will I withstand the pain. She was comforting and empathetic. She was, as she has always been, an incredible friend.

She helped me see my fear. Somehow that conversation helped me take hold of it, even as it had a complete hold on me.

Then, with the help of many friends and family members, surgeons, nurses, and residents my fear slowly shifted. It consumed me for 2 weeks after the surgery, taking my humor, my light, my heart. Then, with continued support, and light from others, it shifted to acceptance.

It was my surgeons voice that helped the turning point come. “If a leak is going to reveal itself, it will reveal itself”. Go about your normal things, he told me. He laughed with my jokes and even anticipated my irrational fears, he comforted me. I can hear his voice now, it has a unique sound to it, and a cadence to it. I told him how comforting he was, I told him he was a shoe-in for his own TV show. He asked if I could “try not to freak out.” I told him I could work on it. The calm rushed over me in the next days. My leak has not fully resolved, and occassionally I look down at it and think, “Flo you stupid bitch, I will kick your ass,” and my lips quiver and my voice shakes, and usually I cry silently, but then I realize, yea, I’ll kick her ass, and that will be that, and I accept her for her role in my life. So I still have my moments, where fear isolates me, but then I see myself, I see that I have survived so many things beyond just these surgeries and the past few years. So then, I accept it. I accept the hearing loss. I accept the pain. I accept the pressure. I accept the lack of control. I even accept that Flo and Herbert, they will always be a part of me, even as memories someday, and I can push through that fear.

I didn’t talk much about that day, about what it felt like, I tried but failed really, until this week. Then I started to name it. It felt like loss, it felt like crushing pain. It felt emotionally devastating. It felt like what I imagine dying to feel like. In naming it I have begun to let it go. I won’t forget it, I won’t forsake it, but I will acknowledge what it brought me, then I will let it go. I think I’ve started that journey. Today, for the first time in a long time I felt comfortable in my own skin, and I felt different from who I was before. It was exhilarating even while profoundly challenging. It’s just a drop in the bucket, but it was a step closer, a tip toe towards understanding and accepting who I am now.

Peace and love,

Samira