3 months

On Friday it will have been 3 months since what was hopefully the last of many brain surgeries.While I am quietly hopeful at the thought of resolution, it is not easy for me to inhabit my skin, this body, or this world with this new news.

While everyone acknowledges alongside me that this will be a long road ahead, for all intents and purposes the people I love have returned to their lives. I am now here, feeling isolated in recovery, struggling to even articulate what that means. 

I do many things I genuinely love. I go to work, I come home, I work more, I walk my dogs, every third day I fight against my tired body to go to the gym. By Friday I am so exhausted I am restless. My anxiety beats ferociously below the surface, it steals sleep from me and makes me sweat out even the most simple tasks. While on high alert through the day I manage to seamlessly inhabit the various roles set out for me. No one even knows that anything may be wrong. Yet, with the quiet of night comes an inability to control my mind, my body. My fears that something will go wrong constantly and insidiously simmer below the surface and consume my inner depths, while I outwardly smile as I listen to the stories of the new day to day adventures the folks I love are embarking on in various forms. From new jobs to honeymoons I celebrate, with genuine joy and gratitude, triumphs with people, all along feeling that which I have triumphed at is so very far outside of the realm of the schema everyone I love uses to get through each day. I wonder to myself when my triumphs will take a familiar form, a legible form, or I suppose to myself,  I’ll always simply inspire because I was ill. 

I feel isolated in my pain and I name that not because I want pity, comfort, or company but because it is true, and naming pain does not mean I am devoid of joy. The trauma therapist I have started seeing asked me what would change if people knew I was in pain. Arguably nothing. I just wish that my triumphs wouldn’t be those met with the quiet trepidation of an uncertain audience that then leaves me to contend with my realities alone. I wish my triumphs were like the ones I get to bear witness to, I wish they were triumphs in love, in life and in seeing the light.

Perhaps the road to resolution, to recovery, to redemption of a life interrupted is one that must be waged independent of anyone else. Perhaps not. I really don’t know. All I do know is that I’ll keep getting up each day, marking my independence with my strength, my grit and my unwillingness to quit, and in time, I will get better.

Keep fighting the good fight, as they say.

Peace and love,

Samira

Anatomy of a Run

Anxiety and fear, they can be gripping. They cause a weight that makes the act of getting up off the couch an act of force and willpower that is hard to muster. My day started with worry for someone I love very much. Then it shifted to frustration at an unfair world. Then it shifted to self-punishment for feeling the world is so unjust when I have so much. Then it just felt lonely. Not a loneliness that is cured by the temporary visit of someone who loves you and who you love. A loneliness that grips you. A loneliness that responds to the question, “why do you feel anxious?” with a curt “because the fluid around my brain leaks out of my nose.” Or a more ambiguous, “because I am in chronic pain,” or perhaps “I feel unlucky.” Of course I never utter that out loud. It is too painful, almost too ridiculous. I am quite lucky, I have love, I have family, I have a beautiful home with a yard to play catch with my dogs. Not to say I can’t feel things aside from gratitude, but it often feels like I feel too much. Overcoming is the name of the game, or is it defeat? I’m not really sure anymore how I am supposed to act, how I am acting, or what is what.  I feel inadequate as a super hero inspiration, and feel simultaneously frustrated at the insinuation that I cannot take care of myself. I don’t want to be weak, but I don’t really want to be strong – when I don’t feel so strong, that is.

Then again, maybe I am strong. Maybe I’m downright badass.

So, rather than resign myself to days on the couch feeling inadequate about what little work I’ve accomplished, I run. Literally, I run. Yesterday on a treadmill I ran fast and hard, not for long but made a mile. Today I ran in the heat, until it hurt, then I slowed, then I kept running. If you run until it hurts, maybe the things that felt like pain won’t loom so large.

The red points on the map are the points where my beating heart and head begged me to stop, to catch my breath, to wipe the spinal fluid off my face, and swallow what dripped silently down my throat. The orange points are the points where I resolved to keep going, slowly but with all the power I could muster. The green were the moments I felt the leaves move in the slight, quiet breeze and felt my loved ones, here and gone, pushing me forward. The red again, a stop, a pause in time, a “pause in the workout,” as my app tells me, my hands clasped tightly to my sweaty head, wishing for a moment that anyone, anyone at all who loved me would find me in this moment and know exactly what to say or do, even when I didn’t know what that was. They were moments where I wanted rescue. Those moments end with a recogniztion that I must rescue myself, so I pick myself up and urge my legs forward, moving from my hips to elongate my stride. Then back to green, where I stand up in perfect runners form, knowing no one can pick me up but me, and I summon my will and my strength and I keep going despite the mental and physical pain. And for a moment, as the map lights up green, there is freedom, there is just me and the road, pounding at each other, pounding out life’s problems, running until it hurts and then running until it feels like nothings left. And when it feels like there is nothing is left, there we find gratitude.

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I am grateful for the life I have, the love I have, and I am grateful to try, at least for those moments where life feels free, to try to overcome. Perhaps in running until it hurts, I can bring myself back to the present, back to this moment, back from whatever land of fear and anxiety that has taken so much of my energy.

Peace and Love,

Samira

Muscle through

Im so goddamn tired of being tired. I’m so frustrated with “healing” or what no one in the medical profession let’s you know feels like stagnation alongside a quiet resignation of a new reality for yourself. A sad reality,where everyone worries but no one knows what to do, including me. It’s interesting to realize how quickly the world keeps going as you slowly try to reintegrate into it. It’s interesting to find how painful it can be to not have the zest for life you once had. It’s interesting to want so desperately to work,to learn, to play,to support,to laugh, to smile but your depressed energy reserves, palpable fear, chronic pain, and even the concerns of others keep you cemented to your spot.

My doctor told me I could go back to work. He told me it would still feel crummy but I could “muscle through.” He told me time away from the hospital would do me good. He didn’t tell me that muscling through is rather lonely. He didn’t tell me that fighting hard to be enough in a world of bodies of varying abilities is hard and frustrating. He didn’t tell me that whether I muscle through, grin and bear it, or do nothing at all but rest, it hurts. And frankly, that fact sort of pisses me off. If it’s gonna hurt anyhow, I may as well enjoy the ride.

It does feel crummy, and I have a nervous energy that won’t quit. So I decided, I can rest later, today, I name it here, if it’s going to hurt, than I might as well as enjoy myself despite the pain.

I’m rejoining the world full force, blood, sweat and tears. 

I hope it works, because this quiet restful thing wasn’t getting me anywhere. Plus, I have a radio active lumbar puncture coming up so I might as well enjoy myself in the meantime, or at the very least get back to work, to learning, to exercising, to loving fully no matter how worn out I get.

Peace and love,

Samira

Life was hard today 

As evidenced by the residual tears on my pillow and the fact that I am Google searching things Ernest Hemingway said while I lay in bed, today was a rough one.

I woke up feeling lonely with a headache that would respond just enough to medication to be tolerable but not enough to let you catch your breath, and despite the best efforts of my parents to cheer me up, the tears stayed on the brim of my eyelids for hours. I lost my cool more than once wondering why with a life so full I felt so empty. I reached out to people I loved but avoided anything too close because my heart felt fragile.

My last two weeks in the hospital were really difficult. I tried hard to stay away from heavy meds, to stay lucid and clear headed so as to govern my medical decisions. I felt like a burden to those I loved and for one of the first time’s in a really long time, I just felt plain sorry for myself. I wanted out of the hospital so bad. And now that I’m out the terror of another recovery has left me utterly speechless. 

Don’t get me wrong, I’m grateful I survived. I’m grateful for my beautiful family and friends. I’m grateful for a genuinely full and happy life. I’m just sad about my head. I’m sad about how it’s never cut and dry and I am sad that I am sad, which is dumb.

There’s no reason today  was a hard day. In recovery there just are those days. Hell, in life there just are those days. So I am leaving today as just what it was, a day where the weight of all you’ve been carrying starts to make your back ache, and I will close my eyes in faith that tomorrow will improve. Not because I’m an optimist and not because it has to, but because I want to believe that. And sleep will bring me reprieve. 

And maybe tomorrow I’ll come up with a plan of how to put some of this weight I’ve been carrying down.  

In the meantime, all I have is this moment, where I name where I am, and notice how fleeting this moment is as I move on from it.

Peace and love,

Samira 

Number Ten

I was doing great. I was upbeat, I was present, I think you could even have called me peppy for a bit. I was unphased by my 10th brain surgery (11th surgery overall). I was singing Jason Mraz’s “Everything is Sound,” and taking the uncertain and unwritten future as a reason to stay firmly in the present. I worked out, I saw friends, I worked on my dissertation. For all intents and purposes, I was thriving.

I may have been delusional, but my delusion was an excellent coping mechanism.

I don’t feel happy today. I’m not brooding like I was for a moment a few days ago, but I’m not happy either. (Note, I don’t place any judgement on that because in this moment I just am what I am and I don’t think life’s purpose is to be happy, that said, I do like happiness). I just feel a lot. I feel responsibility to be the chipper defender of doctors and brain surgeries as no big deal. I feel reluctant to admit that fear is creeping in. I feel annoyed that I have to face my life and death in this way again. I feel sorry for my loved ones — for the pain, the anxieties, the worry. I want a summer of travel, lounging, and of the mundane irritants of daily life. I want mosquito bites and puppy baths to be my greatest concerns.

Alas, that is just not my fate and not who I am. Since I was a child I have taken it upon myself to understand and mitigate the darkest of the dark in the world. So perhaps, even if I wasn’t navigating my own trauma, I’d be finding a way to help another soul navigate theirs. Perhaps that is why today I feel empty, I feel alone. Not because I am not awash with love. My community provides strength, love and light in droves and I am beyond grateful. Rather, I just feel the limits of my body, the bounds around how much I can help, be present, or be the light when it is dark.

I should check myself. I should not take for granted all I have. I know that.

I am, however, growing weary. I have little else I can manifest at this time other than a declaration of my fatigue. I know myself, though, and most often it’s only momentary.

Soon enough, perhaps even minutes from now I’ll be singing along to something hoping the melody lifts my spirit and my thoughts come back to the now rather than all the worry of a life lost, of a summer squandered. I’ll sit in this discomfort until it departs. I’ll sit with myself in this troubled water until I dry myself off.

The melancholy always departs.

Thursday, June 23rd I will go in for brain surgery number ten. Until then there is weariness to be felt, work to be done, and most importantly, love to be shared.

Sending light out to the world.

Peace and love,

Samira

The confusing loneliness of the tediousness of illness

I am sick. I have something that necessitates people tearing through my flesh and bone to explore and repair what they find inside. These mere mortals examine and re-examine every inch of my tired head trying to find my CSF leak. To me, that qualifies me as sick.

I am not, however dying. A declaration I am quite grateful for, particularly as I have watched a man who, in a short half a year, I have come to love dearly and from the true depths of me, fight his way back from a series of life threatening events that to even doctors appeared insurmountable (prayers, good thoughts, light, etc for this man would be greatly appreciated). He is, we all hope, on the mend, and that is a gift to the whole world. Being in the waiting room is a lot crappier than being the patient. I pray that this stint is the last of my waiting rooms for a VERY long time. I also wish that in this world we could all take a little share of the suffering so that some people didn’t have to suffer so hard. All that said, I have nothing but gratitude for all the hard work and love that goes into trying to help a patient go from a patient back to a person.

My illness, it’s more tedious than it is deadly (I hope!). It gives me these ten or fifteen minute moments of reprieve where I forget that anything ails me at all, then a cough or sneeze or quick movement of my head forces the csf out of my nose and drives the pain into me in a way that makes the multiple scars across my body quake. It gives me times between scans to live and momentarily pretend I can plan my life out without disruption, sketch out a dissertation outline, move into a new house, ride a bike. So I spend the time between scans and surgeries scaffolding the life I have and want. By all accounts it is a beautiful life. I had a scan two weeks ago. I have one today that comes with a creepy lumbar puncture and some glow in the dark goo. As I sit alone in my bathroom having given up on my hair and instead listening to Adele and shoring myself up for a scan, it is not the procedure I dread, it is the certainty that the problem I have cannot be fixed without yet another craniotomy. Today’s test is not to diagnose, the diagnosis is certain, it is to plan, to map a journey into my body.

Strangely, though I know the outcome, the moments before I hear it said aloud and with a tinge of remorse are some of the hardest to bear. These are the loneliest moments. For each surgery I am surrounded by a community I love trust and admire — my team of heroes. Yet, there is a loneliness to being the one in the gown, the one in the bed, the one in the machine or strapped to it. The world watches you, waiting for you to rejoin it but despite even the best efforts of those that love you, they cannot stop the world from turning, or alternatively crumbling while the patient sits in limbo.

Today I get to hear the news I already know, a brain surgery sits on the horizon. Then, I straighten up, smooth my uncombed hair down, put my pants back on (hospital gowns are fun!) and go back to the waiting room where I can and should focus my attention, thoughts and petitions on people who need my love more than I need my self-pity.

Despite my dread, I sit in gratitude for all the love I always get, and I ask you all to spread that love around to those who need it wherever you may find them (they’ll likely also be listening to Adele).

Peace and love,

Samira

 

Why I write

The night before my official diagnosis with an acoustic neuroma I had an idea of what I had based on my sister (a doctor) and I’s amateur analysis of the MRI over the phone. She graciously told me what I had and told me not to worry and wait for the doctor to advise. I did my best that night but spent a majority of that night and the days following my conversation with my ENT scouring the internet for other people’s good or bad experiences with my type of tumor. I found many people who were gracious enough to share their journeys on the internet with a total stranger. Many of those folks took time to email me back, to help advise me in my journey, to send me words of encouragement from the other side. I learned two huge lessons in those first weeks of my diagnosis. Everyone’s experience with illness and disability is different and secondly, sharing can be a gift to the world in the way it enables us as human beings to connect, to release that which may be plaguing us, and help one another through the experience of shared trauma.

I decided that if there was any possibility that my experiences may enable someone out in the world to feel less alone the way others who shared with me helped me, I had to do it. So I started this blog, to share with my friends and family, but also to share with anyone going through any kind of struggle in their life. I am a firm believer that our testimony helps us connect, I believe that we can learn from each other. As my dear friend Ben once explained, there is no extra credit in the struggle. We can learn from the hardships of our fellow humans, rather than suffer silently and alone. To me, it is irrelevant what plagues you, there is no hierarchy of disease. I don’t write to elicit sympathy or wallow in the drama of my tumor. Rather, I write as a testament to the idea that we all have burdens to bear and we all have joy in our life to share in. We shouldn’t walk through this life alone, nor should we limit our worlds to the comforts of those around us. I write in order to invite anyone struggling with anything, or anyone sharing joy, to walk alongside me in my journey. Perhaps in this way, if we walk in tandem, we can foster understanding, we can help carry one another when the loads of each of our lives feels a bit too heavy to bear. And more centrally, we can share our light and our joy, our triumphs with one another.

Many of you know that I write for Cure Magazine, a magazine rightly devoted to the struggles of folks with cancer. While I do not have cancer and have never claimed to, I have been an active member of many communities devoted to helping those with brain tumors of all kinds come together to share experiences and support one another. I also believe that while every person’s experience with whatever ails them is different, there may be wisdom hidden in my struggles that my help others as they pursue their own health. I am a big advocate for those suffering trauma and firmly believe that there is not a great degree of usefulness in separating our communities based on benign or malignant, or along any other boundary nor do I see a great service in valorizing some diseases over others. Some people with cancer sail through treatment and end up in remission, others do not. Many suffer, many do not survive. I personally have watched friends and family succumb to the hideousness of cancer. I have grieved them and continue to do so. I’ve also watched many I love succumb to other types of suffering – mental, emotional, physical. Some with acoustic neuromas or other benign tumors respond quickly and effectively to treatment, others do not. The importance is not in the severity of diagnosis nor is it in the magnitude of suffering. Suffering is suffering and does not care about the earthly constraints we place on it. Our bodies do not care about the rationalizations of our diseases, and indeed our diseases care not what we call them. If they are built to take, they will take. If our bodies are able to heal, they will heal.

I am approaching my 9th craniotomy, to try to enable a quality of life I have forgone for too long. I am undergoing surgery again with the hope of healing. I spend my time in preparation attempting to share as much love with as many as I can. I spend my time sending light to those who may need it and hoping like hell it reflects back on me as I put my life in the hands of a mortal man. I prepare by sharing because I know not what else to do.

I write because I hope that in my suffering you may find hope, just as I found a light at the end of the tunnel of treatment. I found hope in the stories of people that had no reason to share with me aside from our shared humanity. I found hope in kindness, in testimony, in the possibility of survival. While I know that in opening my heart, my life, my disease and myself up to the internet I open myself up to a world of possibilities, opinions, and ideas – both good and bad – that are well beyond my control, I hope that good wins out, that my journey to pay it forward matters more than it doesn’t, and that ultimately we can walk alongside one another in hope, in love, in light, and in life.

Peace and love dear friends,

Samira

In defense of trying: redefining thriving for a new body

I figured something out about myself. I’ve stayed, in a way, frozen to a version of myself. I used to think I was stuck in a protracted childhood because my tumor caused me to regress, but then I was like, mehhhhhhhh, that sounds like a lot of psychoanalytical pucky. But I knew I was stuck. I was perhaps, I thought, stuck in a space of not wanting to lose certain parts of myself that illness threatened: my hearing, my balance, my stamina, my athleticism, my career, my joy, my life. And I still think that’s part of it, but I also think that when I got sick, the fear of what it meant was so incomprehensible and of such a magnitude, there was no conscious debate in my mind as to how I would cope, I just, somehow made it through. I think in the process I got stuck.

I got stuck in a space of hiding in and sticking to my comforts, sometimes even relinquishing my passions and desires to an unnamed monstrous threat that disguising itself just beyond the realm of understanding, or alternatively rationalizing what my tumor took from me as a choice to live a certain kind of life. I let this unknown demon demarcate the boundaries of my life, causing me to see these same few things as markers of good health and a successful life. If I could go back to work, regain independence, be fit, be stable, be unendingly happy, then I’d be fine. So I’d retreat into performances of wellness, shoving down any sense that things were not as they should be. I don’t regret this. This way of surviving, of retreating into what made sense, allowed me to survive and truly, when circumstances are dire, we must find ways to survive. So I watched the same shows, took the same dose of pain meds, laid in the same spot watching the outline of my body grow deeper into the couch, ate the same foods, and laughed at the same old jokes. The routine was comforting in its quiet, it was comforting in the way it gave me a small sense making schema of my life. I knew to a point what each day would look like, and that made sense, I needed that when so much of the way my body betrayed itself did not make sense.

I’m so grateful for the way I got stuck, because being stuck enabled my life to continue with a sated joy of a woman content in her habits and the people around her. Now as I embark on the Persian new year, I want to unstick myself, not because being stuck really meant anything bad, there’s no judgement in my heart, just gratitude. I want to get unstuck because being stuck isn’t enough anymore — life, desire, hope, joy, they’ve forced me to face the pit in my stomach that screams, YOU’VE SURVIVED, NOW TRY TO THRIVE!

I’ve let go of the notion that you must return to work or a pain-free existence to have thrived. I’ve also let go of the notion that things must happen now. I’ve adapted to a life of unpredictability and though sometimes the sense of the unknown makes me quake, I know I must continue forward in the name of others who could not, and more simply, to be fair to myself. The beautiful thing is, if I try, even if I fail, I’ll still have lived a life of contentment, of gratitude, and full of love.

Peace and love,

Samira

The fear takes hold

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

Update scmupdate

Many, many people showed up for me during my recent surgery, through messages, sharing joy, holding my hand, or sending love in various ways. Before I answer any nagging questions that tear at your gut or mine, I feel compelled to say thank you. From the very depths of my heart, so many have done so much for me, thank you for holding vigil with and for me during a time of challenges and of great uncertainty.

When people see me, especially those who I didn’t get to see during the holidays, they usually ask, “how did the surgery go?” Its a bit of a tough question to answer because it could be answered in a couple ways. 1) the surgery went well in that I survived it and though my pain is amplified, I expected that to be a part of this 8th craniotomy, as it was a part of all the others. 2) In the sense of fulfilling purpose, the surgery was a failure. The goal was to repair what has been a chronic CSF leak and upon returning home from the hospital and taking on some of the onus of my own general care, I noticed a drip from my nose. This drip is unmistakeable and marks the fact that there is a path from my brain to the outside world, increasing chances for potentially dangerous infections. All this, of course, is the result of a series of tumor resections and removals to take care of my old buddy Herbert, or as one doc called him, “ah, your little schwannoma you had going…”

I have found myself vacillating between pure disappointment at the failure of doctors to “do their job correctly” and the desire to have faith in their training and abilities. I went on subdued rants about how people ought to be better at what they do, afterall I work so hard at being good at what I do. I called my surgeon in Arizona, begging for a second opinion, crying as I sat on the ground of a shopping mall, too tired to make the most the few outings I had the energy to make. I told them all those craniotomies had taken their toll on me, I told them that I needed their help. The next days were a flurry of appointments and tracking down medical records and me trying desperately not to let my desire for wellness destroy the holidays for the people I love and who love me. After talking to the surgeon who performed the last surgery, I felt confident in his next steps. They are steps that help him learn why this CSF leak doesn’t make sense, and steps that empower me with information. I am hopeful that I can trust this surgeon, as we seem to be learning in this process together. That said, I am not going to proceed without the opinion of both surgeons, though they have diverged in the past, I am confident (or at least I tell myself I am) that one of them will come up with something.

So yesterday I made hospital history as I performed a test my surgeon and the radiology doc came up with to track the leak. They performed a lumbar puncture and injected a contrast dye, a not uncommon procedure. After the injection I was literally hung upside down in a hospital bed and made to lay there until the contrast could make it way into my head. As an anomaly to people passing by as I was wheeled from room to room to perform tests and wait, I joked with folks that saw me and felt happy enough to be the patient who carries joy around with them despite their world feeling upside-down (see what I did there?!). I quietly noted that when previously sitting in a hospital hallway, crying in a hospital gown, waiting for a CT, I was all but invisible to passersby, but as I hung there smiling, people stared, smiled, said hi. It was strangely satisfying and disappointing to see the way an anomaly gets attention, but also to see how sick bodies in a hospital are so common place they’re hardly seen. After a series of strange conversations in the hallway and many techs and nurses with kind eyes and genuine smiles letting me know I was a trooper, I was taken to a CT to see how far the dye had travelled. Then, once we had confirmed it had gone where it was meant to go, it was Flo’s (the name of my somewhat bitchy CSF leak) time to shine, to do something that even made the docs chuckle a bit. I was sent, dressed in a hospital gown and scrub pants, into a hallway and to the stair well. There I was instructed to run up and down the stairs, bend over between floors and shake my head vigorously, to force the leak. So I did. I fought the vertigo and the tight breath in my unexercised chest and ran 5 flights, over and over again. The lumbar puncture site ached. My leg tingled from the nerves that were tweaked. I felt ridiculous and embarrassed as I ran past professionals. I tried to give patience to my body as it tried to understand its circumstances. Finally, Flo showed her  bitch face and I stopped running, though not until the doctor accompanied me on one final sprint to ensure I was good and leaking!

After a tense, face-down CT scan I was informed that the test did what it was supposed to, they can see the leak and where it is going. So today I wait patiently by the phone for the docs to weigh in.

I spent the night in pain, a heating pad wrapped around my torso and an ice pack wrapped around my throbbing head and neck. I filled myself with anti-inflammatory medicines and muscle relaxers and hoped rest would come. I imagined my breath bringing healing to my pain and carrying the suffering away. And as I sit here, sore and tired, feeling so many points in my unruly body screaming out to me, I wait for my energy to return so I can conquer the list of tasks ahead so I can reenter my life and the things I love with at least a shadow of the gusto I feel for them.

So when people ask how the surgery went, I guess my answer is that I don’t know. And I’m okay with that, at least I am learning to be, and feel that way in this moment. I’m living in the uncertainty of a body that refuses to conform to the treatments its been given, a body that perhaps can’t easily be fixed. So right now, broken is OK with me.

Peace and love,

Samira