Last night I found that, despite my rather long and arduous history with brain surgery, I am in fear of this upcoming procedure. Perhaps I am coming unhinged in a futile attempt to shirk the responsibilities of living, or perhaps this fear is real, built from a journey of procedures that failed to do what they promised. Last night I was told to have faith. “In what?” I asked. My boyfriend settled rather tentatively on his answer… “In the doctor.”

Perhaps I should step back a bit. At the time of my last post I had been strung up and sat hanging in a hospital hallway trying to will my CSF out of my face to illuminate for doctors how it was managing to find its way out of my skull. It was a stressful day but not a horrible one. After a lot of waiting, as is often the case when you’ve entered into the complex medical industry, I had an appointment with my local neurosurgeon. He had recommended surgery over the phone and this was his opportunity to explain what he saw, provide me with a plan and offer some sense of confidence that he could, on this 9th operation, offer me some relief from this incessant process of putting my life in his hands and ceasing any ability to control the outcomes of my own fate. My destiny lies most immediately in his hands.

While waiting for this appointment I spent my days trying to find a modicum of normalcy. Seeing friends where I could, working to the best of my ability. I found early in the spring semester that after so many surgeries my body was in revolt. It refused to respond to the medicines I put in it, my pain was and continues to be chronic, and has proven to be severe on many occasions. After just one day of teaching the classes I was so eager to return to, I made the difficult decision to leave my job so I could keep my eyes on my dissertation, my health, and my family and family of choice. Those three things had taken up so much emotional bandwidth that there simply was no room for work. I was just too tired, in too much pain and the anticipation of a mysterious 9th surgery weighed heavily on me in those early days of January. Still, I managed to work at a conference, to attend another conference and return my focus to my research which, after a considerable time away from, I found I was still deeply passionate about. In the midst of all of this was the stress of sending medical records to the surgeons in Arizona, hoping for a second opinion, some news that would offer me comfort, make me feel better somehow. They told me they weren’t sure what they were looking at, weren’t sure there was even a leak and that if there was, if a capable neurosurgeon had not yet been able to fix it they could not promise me they would do it on the next try. They gave me names of types of shunts to research and tests to run…Deflated I waited patiently for my local doctor’s appointment to come. I focused on what I could, took enough ibuprofen to tear a hole in my stomach, and with all of it, I for a moment forgot that I had been suffering. My pain and stress had so thoroughly entered into the fabric of who I was it became a sort of commonplace. My boyfriend asked me one day if I would know it if I felt great, would I be able to distinguish that feeling? I hadn’t thought much about it because I guess I’d forgotten what it was to feel any different than I do now. I decided to set my focus on abandoning judgement of how I felt. I decided to just be in my current state without naming it good or bad. It just is, perhaps it is like this for others, or perhaps it is not, but for me, it just is.

And that’s where I stayed for quite a while living a quiet simulacrum of a promising life, hoping that in imitation of comfort, comfort would be found. And then last night, perhaps in the quiet contemplation that comes with the coming of spring and the Persian new year, the fear grabbed me. It gripped me in the night and held on tight. The doctor has a plan, a plan involving two incisions, a temporary shunt, and a reasonable hope for healing. At least I think so. It didn’t occur to me anymore to ask the doctor how likely it would be that this surgery would be a success. I guess given my track record I simply assumed it wouldn’t. Then I realized there was this bastard on my back, calling upon me and begging me to face it. I felt this insurmountable weight on my shoulders urging me to look, to explore what it had to say. That bastard was hope. Without consciously making the choice to do so, I had been hoping this one would work. I wanted the surgery to be a success. I’d been planning my life outward without any regard to the beast that has been this CSF leak.

Then the fear took hold: what if it doesn’t work? What if it fails? What if there are complications? What if I lose part or all of myself? What if, what if what if… I was drowning it.

Have faith….

In what???

I don’t really have faith right now, at least not in a way that calms my fears. I’ve never been particularly religious, though seeing a friend with brain cancer suffer and get sick has led me to be a person who prays almost every minute of every day. But those prayers are not for me and truly I don’t know where they go, they are quiet and plaintive urgings for whatever being or power governs us, if there were such a thing, to give life or at the very least comfort back to someone who suffers much more deeply and urgently than myself. I don’t really have faith in science because my experience with it has shown that it’s kind of a crap shoot, a highly educated and sophisticated crap shoot that is often quite elegant, but still, it’s a big guessing game. I don’t have faith in many things but here’s one thing I so firmly believe in — love.

I have faith in the renewing power of loving the people around me and their love washing over me. So, though fear has taken hold and I work with it in my belly beckoning me to let it take over, I am keeping it at bay with the comfort of knowing that all the love — past, present and future — is in me now and whether I come out of this surgery or not, whether I feel physically good or not, I am living a life of love, and that will make all the difference.

Peace and love,

Samira