Ode to a face

by

I get gamma knife radio surgery tomorrow. Stereotactic something or another. On the tumor that said “stable” on report after report.

But then, a conscientious neurosurgeon, dare I say, a friend, cared enough to look, then look again.

“I hate to say this, but it looks…fuller,” he said and he leaned back and pulled his glasses off. Deep breaths and we decided not to panic, don’t freak out and don’t make any decisions, don’t overblow what it means or step out of line. Let’s give it four months, let’s wait and see.

Four months came and went, another scan, another report, “stable.”

“Maybe we were wrong,” he says as we lean closer to the computer investigating side by side MRIs.

We go way back to the beginning, before any surgery, then to the last surgery, and then to every year. We bypass report after report with the word stable on it. The doctor slowly and meticulously measures each MRI, jotting down the size on the back of his clinic notes. He mumbles to himself, “if you only look scan to scan, the difference is negligible, but if you look over time, all those changes add up.”

“Add up to what?!” I loudly say. Coming out of his focus, his face falls.

“I don’t want to give you any more surgery… so I think our best option is to radiate.”

I went home and pulled up every MRI, I spent days poring over them, comparing reports, doing my own measurements. I sent messages to my doctors in Arizona, the ones who’d accepted that simple report, one word, stable. I asked them to take a long view, to look over time, they agreed, the best thing to do was to radiate.

In my quest for a different answer I kept finding myself on the same road, hurtling forward toward the same cliff.

No, radiation won’t kill me, it may not do anything to me.

But it may steal my face. It may take my ability to smile, to wink, to scrunch my face up reflecting what my sweet baby does to me when she is expressing her array of emotions. It may take my symmetry. It may take my ability to blink. It may make the side of my face fall, fall, fall. Fall flat and frightened from a world unkind and cruel to those whose disabilities they can see. It may steal my mask, so carefully cultivated, curated and conditioned to smile, to nod, to apologize, to consider everyone before it considers me. It may steal my furrowed brows, creasing in the middle, and it may steal my smirk, when I think I’ve been so funny. It may take my beauty and with it the shield I use to face the unfathomable. It may take my smile. My smile. It may take my smile and with it, it may take my breath away.

Tomorrow I go in for radiotactic stereotactic something-otactic radio surgery. I haven’t even bothered to learn the name. Mostly because I don’t want to go.

“ACT CASUAL,” I say to the friends who wish me well, don’t offer to be kind or to support me because I am not even sure I will drag myself out of bed and go tomorrow. I feel fine. I feel fine. Yet, something grows within me, and while the treatment may steal my smile, so may the tumor, so I guess we go out on my terms, even if I’ve written the terms with a deep and profound reluctance.

Tomorrow I radiate my brain. Like my mother before me (no really she did brain radiation this year and no we did not get a buy one get one coupon even though we share, among many things, a neurosurgeon), I walk forward with courage (not really), a whisper on my lips, that I’m gonna be alright and this too, like all things, shall pass.

Peace and love and a big, wide, slightly uneven from a decade of craniotomies and a tumor on my facial nerve, but not totally uneven , maybe for the last time, smile,

Samira

Night ride

by

Hey, you. Remember me? I know, it’s been… a minute.

Some things have changed, good things mostly, some hard things.

I’ve lost people, and found some others.

I’m a mom now, that’s pretty cool. Pretty all consuming and exhausting but oxygen providing. She is sustenance and love wrapped up in chubby little arms and a little toothy smile.

At some point, years ago, when I came back to Colorado from Philly and settled into the frenetically paced routine of my day job, I started to work out every morning. Exercise had always been my greatest ally in the battle I’d had with my own thoughts so I would run until I drowned them out or they started to run along side me. Along the way my husband got me a peloton bike and I’d ride in the quiet darkness of morning. Setting my alarm a little earlier each day, I reasoned that now that my academic training was over and I had a job I ought to build a routine.

It worked for a long time.

Bike. Run. Lift. Coffee. Dog walk. Meditate. Begin the day with the world.

It was lovely.

Turns out though, babies don’t give a shit about routines. Heading back to work has been its own crazy adventure. Between pumping sessions in a windowless office and zoom calls and classes, I try hard to hear that quiet I cultivated all those years ago. Because it’s all a little bit louder now.

Louder isn’t always a bad thing though, and in this case it’s a beautiful cacophony of sounds I never knew I could love so damn much. When my mornings imploded with cries, little nibbles and little fists, tiny laughs and the hums of me and my spouse, I decided to embrace the noise. I want to soak up all that noise, in the one good ear I can hear it with.

I ride at night now. I run at night now. I lift at night now. I find my voice careening into the endless expanse of nighttime as I quietly sing along to music as I go.

It’s not easy though, though it’s been many years since the last surgery I live with what is certainly a chronic fatigue. One balance nerve, the incessant ringing in my deaf ear and a day of performing normal in a world not built for the wobbly, single sided deaf woman with a stiff neck and pain in her shoulders, leaves me a bit listless when I come home.

After scavenging for dinner with my partner, listening to the laughs of our baby girl, I take her to bed. I close my eyes and listen to her quietly eat, the shadows of her tiny hands rubbing her beautiful little eyes dance across my eyelids. I am at peace.

With gratitude then I shore myself up to ride at night, to build strength in my body, for her, for my family, for myself.

I ride at night. Knowing I will get a little less sleep but that I’ll be a little more me, so that when I’m with her, she gets my whole heart.

So yea, remember me? I’m different now. I’ve lost a lot of people, and found one…or more aptly made one. And my tumor has almost certainly grown as a result of my pregnancy, and that, while not ideal, is most certainly fine with me, because it means I get to know her, to love her, to be with her, even while I keep living with Herbert.

If you need me, I’ll be up late, bleary eyed, but grateful, finding my own voice so I can share it with her. I hope in my strength she mirrors her own.

See you in the morning.

Peace and love,

Samira

Beginning to feel the years

by

This morning as I let my body sink into savasana after my yoga practice, I played a song by Brandi Carlile. Her powerful voice gently lulled me into the earth, and as I felt my body sink into a haphazard relaxation she sang, “I’m beginning to feel the years, but I’m going to be okay, as long as you’re beside me along the way.”

These words felt particularly profound to me because I’ve been remarking very deeply on time lately. Yesterday I realized that today was the 6 year anniversary of the fateful MRI that finally helped me understand why I was plagued by headaches and a wonky balance system since I was a teenager. And in fact, I am beginning to feel the years. I feel tired, I feel in pain, I feel like it should be impossible that my team of doctors is still urging physical therapy 2 years after my last surgery, I feel annoyed that I can’t trust the result of the spinal fluid tests, I feel a lot. But I also feet grateful and joyous and alive. I feel silly, and funny. I feel loved and able to love. I feel really damn lucky too. This tumor was like my invitation into a world of suffering bodies and not all of them emerge. Just as we all will eventually have to, many of the friends I’ve made along the way have graduated on to whatever it is that awaits us, even if that is just a quiet mystery.

But I was struck most by the second line she sang as I urged my tired muscles to release tension and allow my body guide my mind towards solace. “I’m going to be okay, as long as you’re beside me along the way.” Despite my best meditative attempts to keep a mind that flits thoughts away as they come, I was flooded by how many people have been and are beside me. It was as though I was immediately being surrounded by so much love, so much care, so much compassion. I felt my husband, just as I heard him cough from the next room over, his fervent loyalty, love, kindness and care allowing my tense shoulders to relax. I felt my sisters, each making me laugh and making me brave. I felt my brother, strong and protective even as he wages his own recovery and journey through chronic pain. I felt my growing list of siblings, their parents, the new additions from our growing family. I felt my friends, my family of choice, and the various ways they love me, each with a unique love language. I felt the loving kids in my family, earnest and genuine, with their untarnished, unconditional love. I felt my parents, my beautiful, ardently supportive parents that, even as they are faced with cancers and wage embodied battles of their own, never stop showing up for me. The parents that never give up on me, no matter how confronting I can be while in the ravages of anxiety. I felt it all. I feel it all. I feel all the years of pain and joy, all at once.

Time is a funny thing because we often start life thinking it is boundless, endless, and full of possibility. In many ways life is rife with unending possibility, but the trauma of disease often confronts us with the reality that it both is and it isn’t. Life is short just as it is long, and we have to live in that uncertainty. Disease or no disease, none of us know how long we’ve got, and this is something I came to terms with for myself but as I reflect on the years of my life, I struggle hard to accept for the people I love. Time is a funny thing, the way we feel it and the marks it leaves on our heart goes well beyond our foresight.

And though I feel so much, I feel light.

I am indeed beginning to feel the years, my pain from this and from life has been profound and I feel it every day. The frenetic energy of our world threatens the work I’ve done to manage the trauma I’ve faced, but I am also okay. I am more than okay, because I am constantly loved, in so many ways, by so many people. I love hard and with my whole heart. My dears, I love you so.

It’s been six years, I’ve felt them all, and I am monumentally grateful for that.

Thanks for sticking around to see me through. Cheers to that. And cheers to more years, cheers to whatever it is we’ve got.

Peace and love,

Samira

I’m With You

by

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

How to be sick

by

 

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

by

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

by

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

by

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.

Screenshot_20160812-174030

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

by

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 

by

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