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.
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.
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.
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.
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.
I shouldn’t be sitting here writing this right now. I should not be sitting here ruminating on what is to come. I should be trudging away on final papers, grading and that dreaded dissertation.
I shouldn’t be sitting here looking at the calendar and counting down the days to my next surgery. There’s ten by the way. There are just ten days until I make the familiar trek into the cold, sterile hallways of the hospital and await my fate, whatever that may be.
I shouldn’t be sitting right here and thinking about that because life is too full to be wasting it on such matters. Yes, the surgery is big, it is staggeringly big, but I’ve been here before and life, it is so full of so much else.
I shouldn’t be sitting here fixated on the calendar. I should be fixated on all the beautiful things that are filling it up until that dreaded day. Holiday events, deadlines for creations and ideas, parties, galas, time for love and pie and laughter.
I shouldn’t be sitting here replaying the mixed up, upside down memories of all the surgeries past. I shouldn’t be focused on the pit in my stomach and the goosebumps going down my arms. It’s just that, it snuck up on me. I pushed it down, down, down. I neglected it, I denied it the force it will have on my life with such a gusto, I almost – just barely – forgot it was a part of my story.
I shouldn’t be sitting here right now doing this – there is too much else to do. But alas, I am sitting here right now, immersed deeply in this moment of acknowledgement of what is to come. It is not fear exactly, I fear no fate because my life has been so staggeringly complicated and beautiful. It is not dread alone, because I do not solely dread it. It is not hope in the way hope exists with deep expectation, because my faith in the process is staggeringly low. It is not disbelief, as I have known this was the only way out of this spinal fluid leak. It just is this moment that is a bit too large to dissect and understand. Chills run down my back with every thought about the cuts, the pills, the pain, the healing. The knots in my stomach tighten and release as they grip my body. My back twitches, the muscle memory of the pressure of an uneven body irks me as I correct my sideways posture. Maybe I shouldn’t be sitting here right now, tuning into every bit of my flesh but I am.
I am sitting here, preparing, or perhaps just acknowledging where I have been, where I am going, and where I am now.
I can’t fully articulate my moment, so I am turning to someone much wiser than I…
“I finally understand what Julie Norem meant when she told me that one could be simultaneously anxious and happy. The assurances are momentary, at best half comforting, like being told “That’s not a man in your room. It’s just your clothes draped over the back of a chair casting a shadow, see? However, there IS, actually an insane, knife wielding murderer loose in the neighborhood. G’night.”
Everybody’s got something. In the end, what choice does one really have but to understand that truth, to really take it in, and then shop for groceries, get a haircut, do one’s work; get on with the business of one’s life.
That’s the hope, anyway.” – David Rakoff (may he rest in peace and look down on us with his familiar wit and worry)
T-minus ten days.
See you on the other side (or in one of those beautiful things that fill the spaces between now and then).
In one month I will get my 7th craniotomy and my 8th surgery related to my tumor (the beloved Herbert) and my spinal fluid leak (the finicky bitch Flo). It is the one month pre-anniversary of the day I will have my body opened up yet again.
I have a list of dates in my mind. The surgeries I had, the days in the hospital, the days I went home, the days I was in the emergency room. I have that list in my head because as I pass each of those dates a month later, or a year later I get a reminder that I live. I continue to live. Though often with pain,and sometimes with suffering, I get to live. And boy is it a beautiful life. It is so full of love that I cannot contain it all, it is so full of gratitude that I can’t always express it. And yes, I carry the love and gratitude with the pain, never denying myself my right to feel sad, or frustrated. I carry all these human emotions, because I am but a person. And life can be complicated like that. Beautiful though, in all of its perfectly imperfect moments.
In one month I will spend a morning hungry from the emptiness in my stomach, yet listless and without an appetite because of the dread a surgery brings. In one month I will gently and carefully wash the scarred curves of my body, preparing them to be sterilized. In one month I will put on something soft, that easily falls away, reminding me of how fruitless these vestiges of our everyday are. In one month I will sit on a cold hospital bed, with a warm but brittle blanket over my legs while nurses struggle to find a vein that will give one of their needles the time of day. In one month I will hug the people I love, some who have been there all along, some who I am honored to love anew as we embark on this journey that is life; I will hold them tight and whisper my temporary goodbyes. In one month I will feel the breath get caught in my throat as I am carried away from the network of support, wheeled away by strangers. In one month I will make jokes until the nurses and anesthesiologists laugh so genuinely the pity in their eyes escapes. In one month I will carry my loosening, waning body from the bed onto the operating table. In one month I will feel the stiff gelatinous rubber of the pillow that carries my skull, before it is drilled open, against my neck. In one month I will feel the familiar squeeze of a doctors hand on my arm as he assures me he will take good care. In one month I will watch a mask close in on my face, as I drift away into temporary darkness. All of that I will remember.
In one month I won’t remember the slice of the scalpel as it cuts over rigid scars. In one month I won’t remember the sound of the drill careening through my body. In one month I won’t remember the vulnerableness of my body, laid out naked on a table. In one month I won’t remember the feeling of getting bruised as a vice closes in around my head. In one month I won’t remember the sutures as they urge my flesh shut. In one month I won’t remember your faces as you wait in angst for news of my return. In one month I may not remember how humbled my spirit feels to be loved by those of you who hold vigil for me in my absence. I’ll be in the darkness for those moments.
I know what I will remember, because this road is all too familiar. It’s almost habitual and the ritual of getting surgery fills me with hope and dread. The tension of those feelings pulling against each other weighs on my heart. And I remember, and those memories mix with the anxieties and hopes of now. Though what I remember most is love and what I imagine most into the events of next month is love. Walter Benjamin once said, “the work of memory collapses time,” perhaps that is why I sit here now , with one month before surgery, remembering what will happen.
“Memory is not an instrument for surveying the past but its theater. It is the medium of past experience, just as the earth is the medium in which dead cities lie buried. He who seeks to approach his own buried past must conduct himself like a man digging” -Walter Benjamin
Happy Pre-anniversary my friends, may we all remember something that matters today.
I have had a few lines of a John Mayer song stuck in my head since my most recent hospital trip. The song goes like this:
“You gotta show, show, show me
Show, show, show me
Show, show, show me
That love is a verb
Love ain’t a thing
Love is a verb”
The song is simple and straight-forward, imploring action in our lives. Inciting us to do, in addition to what we say. I love that song in all of its simplicity.
My most recent appointment was not a substantial one. It was just a trip to the hospital for a scan. Scans inherently come with a bit of anxiety, in particular the ones you know will lead to surgery, but this seemed a bit mundane to me and not much like a big deal. The hospital has lost its edge to me, no longer do I see other patients and experience a fear that I will somehow end up among a sea of the sick. Now I see beautiful people, in all their varied degrees of health and wellness, and I see myself as part of a collective of patients: each of us seeking to figure where we fit on the continuum of illness to wellness. I don’t fear test results, instead the empower me with information. I don’t fear the unknown because it is all unknown. I don’t worry about outcome, because I have relinquished control over that which I cannot change. I do my best, armed with information, to survive the scans and treatments in a thoughtful way.
I didn’t particularly want to sit in the waiting room alone, though I knew the scan would be short and sweet as far as brain scans go. My mom went with me, despite a host of other responsibilities and obligations in her day. We laughed the whole way to the hospital as she slammed on her breaks and quickly changed lanes to avoid any potential of me being late to my check in time. She joked in the waiting room to provide a potential distraction to the sea of patients being called back ahead of me, to keep me from finding that slice of fear that will likely never fade away. She smiled and laughed and offered to hold my stuff as I went back to the cold and dim room where large, ominous machines buzz around me. She waited behind the big scary doors that protect the outside world from the radiation of the giant machines inside. She rose to meet me when I emerged from the room. She rose to meet me, not just physically, but mentally, emotionally. She rose to meet me.
She loved me in her actions more than she could in her words. Her presence, like the presence of all the people I love, carried me forward, that day and every day.
Ever since then, as I have been wrapped in cascades of love from many parts of life, I have found myself humming this song to myself. Imploring myself to do as it says, and show the world my love. It is with humility I stand before you, offering you all the host of love you have shown me. Offering you all so much of myself as you have all given me so much.
I started this blog years ago in the hopes that I could pay forward the support I had found in various online and offline communities. I had hoped and continue to hope that any suffering, joy, pain, happiness or sadness I face could serve as building blocks for others as they approach all the challenges and hope their lives offer them. There is no way for me to truly evaluate if this work in progress is a job well done. There is no way for me to measure any difference or indifference to these words on a page. That said, there is a certain power in naming our desires, our hopes, what we believe we might be able to do. I believe fervently that to those who seek my support, I can rise to meet you. I can love actively. I can do and say.
I can rise to meet you.
We are not audience members to life, we don't live to watch life pass us by. I may be sick, I may have pain, but I get to live in my life, however complicated that life may be. I get to do, I get to act, I get to love. And so do you, even when all you can do, all that you can summon each day is to open your eyes and let just the tiniest bit of light in. Life is not built in sweeping moments of greatness, but in the moments we encounter with both pleasure and disdain. Life is not about doing it well or right either, life may be suffering, but it is about being in those moments, being a part of them, staying aware of where we are and accepting ourselves for the moment we are in.
I have to get more surgery in December (yes, because of Flo), so the next months will be peppered with tests and doctors appointments as I prepare my body to face itself once again. I see this surgery not as a devastating consequence of my illness, but as an opportunity to heal, to change, to grow, to move forward. It may work, it may not, and I don't really want to go through it again, but movement, even when it is hard, takes us forward to a place we've never been, to the lesson life is forcing upon us. So I will move, I will change, I will try not to be a total bitch about being in the hospital, and I will do so while bathed in the love I have been shown. And I will try, despite my bodies efforts to stop me, to show you all love too.
It was just one week ago I found myself numb in the car, unsure how to scrape my way out of my latest predicament. By Wednesday my perspective had changed and by Friday I felt like an entirely different person. Not healed, not new, just different. You see last weekend I embraced the moment of sadness and sat present with it. Alone in my frustration I reached out to the world and the world reached back. I moved with each subsequent moment, reserving judgment as to how I should react or feel and simply stayed with myself, where I was, in every moment of my life. We often hear that life is short. That we must sieze the moments. It’s true, before we know it today will be gone. But, if we practice being in each of our glorious moments, ugly or pretty, whether we are given 100 years or far fewer, life is also long. In one week I have felt so much, seen so many, experienced life on so many levels. Life is filled with precious moments, even when life is short it may be full of experiences where we love with abandon. Even the smallest lives may be large with love.
I often wonder if I died tomorrow or the next day what people would say about me when I am gone. How would my life be measured? Would it be in adventures? Bunji jumps into the Nile or excursions to Central America? Would it be measured in accomplishments? Trophies on the wall or degrees collected? Would it be measured in fitness? Strength of body or a silly three rep max? I wonder because those are the things we so often present to each other. I’ve climbed this many mountains and won this many awards.
I hope that instead we think of each other in moments where we loved fully. Moments where we lifted each other up and carried each other forward. Moments when we walked along side each other learning and loving as we trekked forward on our journey.
This morning I got up early and drove to Boulder with the sunrise. As the sun reminded me how small we all are, I basked in its radiance. The powerful reflection of light on the mostly empty roads filled me with a solace I hadn’t felt for sometime. You see, when you have a diagnosis and a fragile heart there is a specific kind of pit in your stomach and it stays there all the time. But when your worries are eclipsed by the painted sky for a moment you allow yourself to feel that fear in a way that is raw and real and unmitigated by the conventions of everyday life. If fear is the heart of love it is in the moments of intense vulnerability that you truly love yourself.
As I drove further from where I was to where I was going I watched the sun reflect off of buildings and mountains. The world appeared like a cardboard cut-out of itself, reminding me of a childlike play place. I remembered why as a child I fell in love with both the mountains and the city: you get lost in them, in their vastness you can join the masses scurrying about and feel as though you are a part of something bigger than you ever imagined. It’s easy to replace that wonder with an anxiety driven need to make your mark and stand out from the crowd but what we forget is that even when we are subsumed by something much larger than ourselves, we get to choose how we live in it.
Even when the sun blinds us with its radiance, we get to decide what to do with the light. We get to drive into the sunrise and live our moments and explore our hearts. We get to live.
We get to live.
And isn’t that just a fabulous thing?
Today I opted for a day that started with a drive into the sunrise and it likely won’t get much more awe-inspiring than that, but, wherever it takes me I will be in the moment, learning to live a new life in a new body. Learning to live in the present.
Doctor’s updates on the CSF leak next week, surgery TBD, until then let’s let our lives be warmed by the sun.
I try not to post when my posts will certainly be shrouded in negativity. I try to stay silent and stomach the worst of it on my own. I try not to burden others with the incessant failures and fissures in my life. I try to avoid the constant bad news. I do find myself reaching out to a select group of strong friends who, I am thankful, have not forsaken me despite the constant shit storm I seem to spread everywhere I go.
I try to balance my vast and dark negativity with optimistic hopes and a fervent belief that it will all be ok. I don’t really have any of that right now. I can’t think of anything nice to say and I have no words to describe my current mental, emotional and physical state. So I will simply describe my present moment and you can use your imagination to fill in whatever you think might be wrong with me tonight.
I am sitting in a King Soopers parking lot paralyzed by the events of the day. While I was in the grocery store, listlessly wandering because I failed to think of anywhere better to go, I saw a little girl riding one of those penny horses they have by the exit. She had long dark hair and a contagious smile. With each rock of the horse she squealed with joy, smiling at every passerby, as if daring them to find as much joy as she had in that moment. Even I, in my crotchety, hopeless and devastated state smiled with her, wanting her to live in that joy as long as possible. As she smiled so fully I tried to conjure the last time I felt joy like that. I couldn’t think of anything. Not that my life doesn’t have beautiful joyous moments but all my conversations even with those who are the most wonderful, are peppered by the perils of my recent past and my vulnerability and raw and ragged and in everyone’s face. And I perform. I perform joy as though it is ingrained into the fabric of my being. I joke and strive to bring others forward in their journey through laughter. I just am so devastatingly heartbroken right now.
I thought the worst news I would get this week is that I was in fact right about my spinal fluid. I have a CSF leak and I am once again facing a path that only ends in brain surgery. I did get that news and it wasn’t super fun to hear but there was a certain comfort in knowing.
It’s not in and of itself horrible news. I mean at least I was right. I don’t feel right very often anymore so maybe I will take my doomed CSF leak as a win.
And today, I started out thinking today I will be productive, I will matter. I won’t wallow in my depression, I will reclaim the scraps of the person I thought I was and the woman I can’t recognize anymore and I will work and I will feel close to important in my performance of wellness.
That’s when I got a message and took a call that changed how I see my present world. Nobody died, so don’t let your imagination get too far away from you. I won’t give the details because it’s not just about me but suffice it to say it was a call that broke what was left of my fractured heart. It was a call that shattered my fragile reality.
I have always been intensely honest and vulnerable in my interpersonal interactions and generally, it has served me well. But today? It made me seem weak, it made me feel helpless. I was lucky to have some amazing people prop me up in the intervening hours but still the feeling of dread won’t leave me. Maybe in time. If time is a gift I receive in my lifetime, maybe it will help me.
So here I sit, stuck, dreading my return home. Dreading the moment that the quiet sets in and the complex interactions of various life events takes over. I sit here trying with all my might to conjur joy. It’s hard, in this moment, to remember what joy feels like.
But hey, at least I was right about something this week.
I don’t like to be redundant, so I won’t describe my pain again. But, I don’t know if it is too redundant to say that I am in it, pain, that is.
I spent the last 40 minutes wailing like a baby and fumbling with drug bottles. You see, I had a rough night, I have a pinched nerve and my head was achy from a day of me trying to act like a quasi- healthy person (meaning I tried to go to Marshalls and run some errands without first taking meds to keep the pain at bay). My body was paying for this moment of normalcy.
I knew normal was fucking overrated.
Then, this morning as I very gingerly stepped outside with the dogs, they saw a dead rat lying in the sidewalk and lost it. They yanked. I weighed my options, pry a dead rat out of their mouths after chasing them across the highway or hold tight and let the headache that had been creeping in take over.
I let the headache win.
It took over my body.
So now I wail and cry and play my songs and wrap myself in ice packs and write it all down here so it feels just the tiniest bit less lonely to be totally, completely, utterly in pain.
Tomorrow I get the lumbar puncture to test for my CSF leak. Maybe that answer will lead to some relief. Maybe it won’t. But it feels like a step forward (a scary step forward, but a step nonetheless). So that my friends, is progress. There is always hope as this is the part of life that is suffering, and I must believe that with great suffering, great joy will reveal itself.