I’m With You

My day consists of almost constant positive self talk. In lieu of pain medicine that leaves me groggy or simply doing nothing with my time, which leaves me sad, I manage my pain with a sort of steady meditation, although it’s not always so zen.

I wake up in the morning after a night of tossing and turning and my back and shoulders hurt. They’re not tired, not sore, they’re in pain. My neck pulses gently, I can feel the beat echo behind my right eyebrow, in the tops of my cheeks, and I feel drool pooling on the right side of my mouth where my facial nerve is slowly healing (I hope). I whisper to myself in my mind, “you’re okay.” I gently roll my shoulders back, grab my daily medicine for pain, the one that’s supposed to work over time, then I reach for the medicine for my stomach to counteract the effects of the first drug slowly beginning to dissolve on my tongue. My movements are robotic, both careful and measured to keep from causing more pain, but ripe with thoughtlessness, as most routines become.

“You can do this,” I think to myself. I leave the majority of my chores to do in the mornings since my fatigue is just too severe by night. As I watch the dogs chase squirrels in our little yard I move about the kitchen. I am already imploring myself not to go back to bed, the warmth of my loving partner begs me to return, to sink beneath the sheets and hope the pulsing in my neck and head give me respite in sleep. “No it won’t help the pain, sleep never helps the pain,” I tell myself, annoyed that it takes this much work just to want to stay awake.

I get myself to go on a run. “You are capable of this,” I hear in my mind. I remember my pain therapy, thank your body for how far it’s gotten you, keep the habits that help, honor the ones that helped you get here but if they no longer serve you, choose to let them go. “Ok,” says that whisper in my mind, “thanks rickety body, we’re still alive today…”

The beginning of the run hurts. I ignore myself thinking you can fight through. It is only half way through the run, when the pain is building beyond my threshold of tolerance, that I realize I am not fighting my body. “I’m with you” I quietly whisper. This time the sound barely escapes my lips but I am talking to myself. “Allow the pain to exist, don’t think about it,” is the echo in my head. “I’m with you,” I whisper again. I am with my body. I do not fight against it, I work with it. “We are healing,” I think. “We can heal.. and I. Am. With. You.” By the end of the run the pain is at it’s worst, I breathe in a quiet rhthym, click my playlist over to the one marked “pain” and let familiar voices sing to me as I just hear my.mind telling me to “allow, allow, allow.” Living, let alone running, with chronic pain is an inexact science. I feel myself fighting between words of anger and rage at the mere fact I ever had a brain tumor at all, and the gratitude and acceptance of someone who lived. I vacillate between fear of my moms cancer diagnosis, anger that my runs are solo, because my hurt dogs can’t run anymore, and a quiet acknowledgement of all we are blessed with. I talk to myself in my head, negotiating the pain and trying, above all, to keep momentum, to keep moving.

I talk to myself like this all day. I implore myself to keep going, to keep trying, to keep the pain at bay. Sometimes I respond to the voice with respect and care, knowing my mind and body don’t want to be at odds. Other times I am tired, too angry at recent events and the mundane drudgery of every day life that I tell myself to fuck off. Let me be mad, or pissed, let me feel the pain, let me spiral down. Or other times I get busy, the mental energy of my work or family negating my ability to constantly prop myself up with words of thoughtful and mindful encouragement. Those are the times I feel the highest highs and the lowest lows. So I return back to the controlled and mindful space of self talk. Telling myself all day, “you’re okay, and I, I am with you.”

Its peculiar, maybe, to tell yourself that you are with yourself, of course I’m always here, in one body, one mind. But I’m not always present with my self, my pain, my hope, my desire, my fear. All this self talk, the whispers of camaraderie between mind and body, are just efforts to be present in my own body, my own space, and my own life. I suppose I just want to be seen, and in the moments when I feel my mind and body come into sync, find a rhythm all their own, I actually see myself. I see who I was, and who I am, and even, on the best days, who I might become. We all want to be seen, to live in the light and loom large in our glory, and it’s hardest on the days where we can’t even see ourselves. So I try not to get too busy to remember to be mindful. I walk through my days knowing that these invisible aches are only part of the story, and all I have to do to get through is love myself.

May we all live in the light today, present in our bodies and at peace in our minds. (How’s that for some zen!)

Peace and love,

Samira

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How to be sick

 

My dogs were recently hit by a car. They escaped from a dog sitter who stopped paying attention and they got badly hurt. One of them needed her leg amputated. In the days and weeks leading up to her surgery I agonized over the decision to amputate. Were we taking away her chance at a life full of tail wagging and fun? Were we diminishing her quality of life? I also spent days punishing myself for leaving her with someone who could have been so careless. My husband routinely reminded me that life just happens, this wasn’t my fault. I couldn’t shake the feeling, though, that I should have tried harder, been stronger, and that in the face of a tough diagnosis I should be braver.

As a student of disability studies and of a life full of calamities I have long disavowed the myth that illness forces bravery, yet I still put this social pressure on myself. I watched endless videos of happy three legged dogs trying to convince myself that this would be okay. All the while I was agonizing, my pup was adapting. Not only adapting but wagging her tail, barking at strangers, and chasing (more hobbling) after squirrels. After the amputation, when I went to get her at the hospital. She jumped on me as soon as she saw me. The weight of her injured leg no longer slowing her down, she joined me on the chair I was sitting on and wagged her tail mightily.

I realized then that I needed to be more like her. She is joyful and adaptable. She is not fixated on her suffering because she is fixated on the world. She is outward facing, un-phased and undaunted by the prying eyes of passersby. She is just her, three legs or four, she is just herself.

I recently wrote an article about how I cope with my health crisis and the various bouts of suffering my family and I have had to endure in this life. I was surprisingly met with criticism from a community that felt my desire to show myself compassion inhibited their desire to be understood by those around them. I was shocked that me sharing my life as a brain tumor patient was taken as prescriptive rather than informative. And to me, advocacy, compassion towards the self and other, and mindfulness are not mutually exclusive.

What I have found after years of living with an illness, and years of studying trauma as an academic is that when we are suffering we often want and expect people to know what to say, how to act, and what to do to make us feel better, or at least not make us feel worse. The long and the short of it is that no one, no matter where they are or what they’ve been through knows what to say, but they say something because staying silent can often feel like too much to bear. We also bristle when others dealing with much the same problems as us, do not cope in the same way. Some of us choose joy, some search for light, and some of us are sad, angry, or maybe something else. And some of us are in different stages of our illness, recovery, and life and so we can’t always see where each other is and where we may be going.

We tell one another how to be sick. We make the mistake of telling rather than asking, demanding rather than offering compassion. I write about my health not because I have any answers, I most certainly do not, but I do have experiences. I remember when I first found my tumor I rushed to the Internet because my doctor’s appointment was not until the next day. I had committed the cardinal sin of looking at my MRI, I had seen my mass, and I had been left with more questions than answers. I was terrified and I found a lot of voices out in the world. Some of them resonated with me, others did not. I clung tight to the voices that did make sense to me. I reached out to strangers and they became friends. We built one another up, and never ever tore one another down. I chose then to share my experiences because maybe the quirky ways I think of things could serve others. I hope it has been clear in the years I have written here that I do so without judgement or expectation, and without thinking I am the authority on how to be sick.

My husband just sent me an article about wisdom. It says that people who go through difficult times turn those experiences into meaning and that meaning into wisdom. What was most powerful to me in this study was that there is no one way to navigate difficult times. So for me, I choose to be like my dog. I will be un-phased by the prying eyes and grab joy. I will relinquish the judgement adulthood and society so often leaves at my feet. I will abandon the desire to be stronger, braver or better, and I will just look straight into the wind as she does with so much grace, and be unapologetically me.

Transition

I haven’t written here in a while. I just stopped wanting to write about my health because it became something that was too big for me to put into words. The constant fear that I kept at bay through a careful maintenance of “fight or flight” mode slowly started to collapse around me. I also stopped wanting to live in that space where I was consumed by how I was feeling. As a person with chronic conditions, I will always have to worry about that, so I wanted to find a way to let it float in the background, to hide it behind a smile so that I could focus on the more fun and fulfilling parts of life. I also stopped writing because as my health began to stabilize, all the anxieties I had been stifling for years came out full force. I was no longer afraid of dying. I was terrified of living, and of everyone around me dying.

It was, as most emotional and physical transitions are, quite challenging. Coming down from the adrenaline that courses through your veins as you shore yourself up for surgery after surgery is hard. My anxiety took control of me for months as I threw myself back into life with full force. I’d missed so many years that I felt I had to compensate by working faster and harder and more efficiently. Thus, the lion share of the last few years of achievement have been taking place over several months rather than years. I would like to say I have conquered my fears and anxieties, but I haven’t. Indeed, the PTSD and anxiety that I manage are not easy to contend with and will likely linger into the background like all my other physical, medical ailments. And that is okay, I can live with those, because, I get to live. 

Transitions, even the most beautiful ones, can ignite fear in us. Fear is not the enemy though, it doesn’t need to be vanquished. Instead, I sit with my fear, soothing it, calming it, and feeling it in my heart beat, as I go out into the world, smiling big, pain and anxiety only as quiet background noise, and I begin to triumph and celebrate my life, and all our lives.

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