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Dazed and confused, I open my eyes to the narrow gleam of sunlight that invades my room. My mind convulses, processing the trauma, images that encircle by consciousness, my heart pounds as my bionic heart declares its presence. I grasp at my sheets and for a second hope that it will jolt me awake, that it was all a dream or perhaps a figment of my imagination.

And yet, the sheets remain firmly in hand. 

Being a victim of a robbery is an experience that is hard to shake. While most people mourn their material possessions, I think that cruder less explored reaction is feeling violated- exponentially amplified when what is stolen is intangible. It’s interesting how we devalue our time and submit to routine until it is taken from us or until I was robbed of it. An objective view would say that this is all the more reason to embrace the time you have, to move forward unapologetically and unrestricted by the popular facade, but that view is unbiased, unaffected and unaware of how to direct the change. Words.

One of the things that I missed most in my early recovery was my job. Not necessarily the work itself but the feeling that I was a key component of a machine, that my contribution was recognized and tangible based on my biweekly deposit. Irrespective of the role, I would strive to derive purpose in my actions, whether that was as an individual contributor, colleague or manager. In the absence of this work, I found myself lamenting, discounting my role as a father and husband. This is a fickle and deceptive trap that many people fall into and often only realize in retrospect. 

Now back at work, I realize that what I truly missed was the perceived linearity of the environment. I can work hard, do well, get promoted- rinse and repeat. Ultimately I have confidence in the system whereas life has proven to be an unpredictable, unreliable and a grossly indifferent mentor.  My pursuit of success is in spite of my demons, in my willingness to define myself based on actions within my control and not out of it.

My mind moves like a twister, devouring everything within its winding path. The irony is that the only stationary thoughts are those that I wish were lighter and could be consumed and ejected.  I look to those closest to me as my anchors, diluting my pessimism and reframing my view. Sometimes, it’s the little things like looking at my daughter smile- a resounding confirmation that I will never give up.

I wish that I could be an unmovable pillar entrenched in naive optimism, innocent to life’s hurdles. I’m conflicted between the wisdom of the experience and the shame I feel in wishing I could remain blissfully ignorant. I want to honestly tell my daughter that life is linear with a series of happy milestones and ambiguously joyful timelines – and for some it is, though I think it is important to appreciate the stark contrast. Sometimes I wonder if I would have been better prepared if I were conditioned differently, if as a society we learned to showcase the ugly as a way to reframe that the good is privileged. 

This pandemic has been an extension of a nightmare, what feels like the trilogy to a horror series. In some ways, it level set my experience at the very lower limit, with a sample of what me and others like me have had to endure. Isolation is being in a room, surrounded by people in gowns and masks that are your lifeline, and with one viral transmission- the catalyst to your demise. Isolation is being confined to a room for weeks, deprived of fresh air, the ability to walk or shower.

Isolation is being surrounded by people but feeling alone, unrelatable, unusual and disconnected. I’ll call COVID, privileged isolation. 

This journey, not unlike others, is a series of predecessors with one input over another, that some may say results in “wisdom”. Lifes’ algorithm.

For me wisdom is accepting that it may never be okay but that it is…

I used to take for granted the sound of my feet hitting the pavement, a melodic beat that unconsciously reinforced my strength, agility and capability. It was easy to look past my great fortune in the lifelong unblemished career held by my vital organs, critical performers that went without recognition, only expectation and now gratitude and awe in their resilience. 

To most, panting is the unwelcome bitter note in a sumptuous, sweet dessert – a consequence of exercise or payment for fitness. It seems inconceivable that we could lose  this innate currency,  unconsciously affluent until we’re consciously destitute by defect or damage. To me, panting is a luxury. To me, panting is a welcome reminder that my lungs function and that I can once again relish in the sweet sound of my run- a sound that I thought I had forever lost – replaced by the intoxicating shrill of oxygen. 

Being human, we experience a wide range of sensation, a response that our bodies feed our mind. On the eve of a great battle, the soldier can anticipate the possible outcomes for their body but will rarely see beyond the war, unprepared yet conscripted to download the mental trojan. There were times when I asked for the sensation to leave my body, when the morphine wouldn’t help and the ache was too much to bear. I would rock back and forth, twitching erratically, illogically with a resounding plea for my motion to relieve the pressure in my back, my war zone. There were times when I would ask to disengage my consciousness and be put back in gear when it was over…but is it ever?

Living means taking the good along with the bad. I believe happiness is achieved in our ability to make the “good” the principal contributor while acknowledging the awful. The truth is that bad things happen and will continue to happen. Sometimes I feel like a camera with a perpetual need to reframe, refocus,  and re-expose my subject – forever searching for life’s Kodak moments. 

Today, I found one.

I followed my routine walking path, past the clay coloured track, imagining what it felt like to sprint as long as my legs would hold me, unbridled and unrestricted. After my transplants, life quickly became a series of mourning- chapters that detailed losses of life, health and capability. This feels like an enormous payment for a new life – reimagined, restructured and reinvigorated. Perhaps this will never be verified though I am constantly reminded that everything comes at a price, at one time or another…

And then I thought that maybe the only thing limiting me is my mind. What if I simply tried, one foot in front of the other – in opposition of my self doubt and insecurity- what if I can?

I did.

I’m not as fast and might not have as much stamina but I am more committed, more tenacious and the most resolute.

“When I reach the top, I’ll go higher, higher than I’ve ever ever been before”

And that’s not okay, it’s awesome.

Pandoras box opens with an unruly drove of thoughts, incoherent flashes, uncoordinated and timeless.

What I want most is for someone to listen, I don’t need them to understand or to try and relate – like this blog, sometimes I need a sounding board for my thoughts. To say that you know where I’m coming from or can relate to my situation is usually a stretch and that’s okay. 

Though I am part of a larger minority, the truth is I am alone within my social radius, a young man and father that is starkly aware of his mortality, especially in contrast to others my age. As I entertain the prospect of returning to work, my mind generates morsels of corporate thought sabotage that force me to push circle pegs through square holes. If my career is dependent on my health, should I or can I start to rebuild my proffesional identity on such a rocky foundation? What are my short and long term goals beyond the plea for my mental and physical stability? I’ve been conditioned to take life one day at a time, not looking beyond the moment, the crude recourse of a person berated by treatment. And yet most days I am fuelled by looking into the future, to a time when my nightmare would be a distant memory, leaving me untethered and a victor of the blood war I and II.

Imprisoned by my mind and more specifically my memories. I encounter people, places and things that conjure memoirs of my battle, an insidious vacuum that is constantly trying to corrupt my happiness.

In my world, people generally fall into 1 of 2 categories when associating me with my medical history

1. The person is admittedly far removed from the cancer community but is empathetic and largely compassionate. They consciously or subconsciously stigmatize me as a recovering patient which to many translates to substandard or less than capable.
2. A person has familiarity with the cancer community and assumes a 1 size fits all approach when addressing me. This will often result in a series of missteps, leaving me agitated, frustrated and demanding course correction. 

Though I don’t think that either category arrives with malicious intent, it is exhausting to constantly hand out concessions to ignorance personified. As I am currently in the process of reacclimatizing myself to the corporate colony, I’m reminded of the reach of inequality. Beyond the spotlight topics of race and gender exists’ health inequity.

In recovery and beyond, the disease continues to impede on my opportunity pool. After being branded with cancer, people have the tendency to misconstrue survivors’ as incapable. Here the disease continues to run rampant even after its been forced into submission. These views are perpetuated by insipid leadership and passed down the corporate ladder for digestion, empowering a monster.

While on one hand I want nothing more than for life to normalize, I understand that my new normal will require a new setting. Most of us are blind to inequity or accommodation gaps because we are unaffected by them. It’s interesting how aware I’ve become of accessibility standards by simply pushing a stroller. I find it mind boggling how inaccessible many businesses are for patrons with accessibility requirements, specifically those that cannot climb stairs and require a ramp…we can do better. 

Because I’m immunocompromised, my need to isolate has been a constant, necessitating precaution before it was main stream. Interesting how a business that is fully technology enabled can say remote working is unfavourable when it doesn’t affect them but in light of a pandemic can operate more efficiently than the historical in-office cohort…

Perhaps the decision maker was apathetic because they were not personally affected. Perhaps this is why they will never be more, only less than a decision maker- certainly not a leader. 

And for the record…my pencil is sharper than ever and I’m back in the race.

It’s been a few weeks, I know.

July *Out of Office*.

I’m currently out of office with limited access to email. Please defer all creativity until I return. 

Regards, 

Your muse

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COVID has added an unwelcome layer to an already dense and bitter cake, a culmination of sweet and sour notes condemned to a never ending daily loop that promises stagnation. Safe repetition is encouraged when my risk tolerance is next to nothing as a member of the high risk populace – potentially, expectedly fragile and vulnerable.  I’m living in a world in the midst of a political, racial and socioeconomic insurgence – opinions are plentiful and emotions are volatile. Its almost as though this pandemic has inspired “free thought”, heavily influenced, perhaps even cajoled. Competing opinions swarm at one another, aggressive and intent on silencing the opposition. Seems as though the added noise is compensating for the lack of normalcy, an uncomfortable experience for most pushing us close to or beyond our sanity limit. 

Outside of my home (heart), my life is mostly engrossed by hospital visits and the all too familiar state of survivor mode disguised as living. The scarlet stains on my sheets and clothing remind me of my never-ending blood war. My stomach looks like a mine field with varying hues of purple, a multitude of bruises signed with bidaily injections of enoxaparin. My nose is brittle and highly susceptible to epistaxis, untreated and unqualified for specialist intervention in a pandemic setting. Regardless of frequency, it appears as though uncontrollable bleeding is the tender for an ENT (Ear, Nose and Throat) admission ticket. I digress. 

I seem to be on the cusp of my new normal, what you would assume to be a welcome and highly anticipated milestone -the capper to the pharmacological systemic assault. Apprehension buzzes in my ears, and lingers in the pit of my stomach leaving me nauseated, unsettled and on edge. I can remember feeling this way before the sky fell and sometimes I wonder if this was in part, instigated by my optimism- offending the powers that be. A naivety that suggested that the battle was won and that life could resume, when in fact I had only been initiated, a survivor of the prelude. I dare not set the stage for a similar outcome and so I feel inclined to suppress my ambition which can stifle progress -frozen by fear. Sometimes I wish I could day dream like I used to, flash forward 5, 10 years with a high degree of confidence in the direction of my life. It’s as though I’ve been conditioned to not look beyond the day or week with graduated downtime between hospital visits. An experience that I would liken to returning to prison after a brutal and isolating incarceration. Par for the course of recovery.

As my body begins to feel like I remember it, when I could count on the agility of a sprint or stability to descend a staircase without a railing – I am confronted by a different reality than I left. Not that this is unexpected though life seems to be viewed through a different lens, not good or bad, just different.

It seems as though the strategy behind this head game is to stay busy though distraction is temporary. When the noise fades, it invites the silence – a playground for thought anarchy to run rampant. Here, I am busier, expending all of my mental energy to sort through the chaos and extinguish the dooms day narrative. It can be tiring but Marquesa keeps me energized.

Standing on the edge of normal almost feels like the edge of a sky scraper and it is becoming clear that the plunge is forward, the only direction I want to move in.

Hoping to level up from survivor mode.

Sometimes I feel porous, absorbing the emotional weight of an environment or person, sensitive to their disposition, sincerity and artificiality. Likewise, I am equally affected by reasonable positivity, as long as it’s not in opposition of rationale – a recipe for irritation. This has proven to be an excellent tool for evaluating a persons character, an empathic mallet that swings with near precision, rarely missing the mark. Years of astute perception have left me black and blue from rebound,  realizing the degree of dissimulation that presents with each person, a mental gauge that reads as medium-moderate with most, as low for few (authentic) and high for many (faux people). 

I live in a society where image reigns ruler, a trump to reality that is often in contravention of our desired portrait. Everywhere I look, I am surrounded by “filler”, a chemical substitution or enhancement that poisons our bodies, manipulates our mind, leaving us subordinate and indoctrinated into a false ideation of ourselves, others and this world. Sometimes I wonder if others see it, if I’m alone in this reflection that leaves me frustrated and demanding a reset. Something or someone is in control of the marionette as the movement feels inorganic and forced in my recovery. 

Am I defiant or inspired by the vastness of what can be in contrast to what is? Life offers a wide array of experience and yet the vast majority of us are repeating the same tasting menu, an amuse-bouche that is rarely proceeded by lifes’ entree yet we are suspiciously satisfied in this dystopia. I feel restless. Am I exactly as I am or how I’m wanted? As your mind processes that question, consider the influence that acceptance plays in your decisions, past and present. We hold self servant behaviour in low regard, treating it as selfish though I think the intent behind this connotation is to suppress disillusion – and bolster delusion. Our focus on ourselves is often neglected and tethered to the impact of our actions on others. “Big picture” thinking that suggests that we should compromise for the greater good or comfort?. This is not to say that my happiness should infringe on anyone elses’ though my consideration has been honed to avoid self-sabotage, admittedly divergent.

I think acceptance is overrated and overvalued, a perishable comfort that expires quickly and seeks life-long replenishment. I can see how this like-minded thinking can lead to greater control of society, a sanctimonious complexion caked on by makeup, cracked and faulted. I question its value at such a high cost. Perhaps I’ve become jaded by death, having dodged his/her scythe on multiple occasions and now re-processing the mechanics of life as I know it.

Over the last 3 years, my mind has fallen victim to multiple high impact collisions, each more jarring than the last. In these, moments of clarity often follow before they’re stifled by the noise of my reality, a control that forces me into submission but not before I take notes to come back to…

I am angry, a fire that has caught at the surface of my being and runs rampant in my refuge. My bones feel like kindling, dry and highly susceptible to combustion, my spirit is left to simmer, like molten lava on the precipice of eruption. If that weren’t enough, I teeter totter between happy and sad, optimistic and pessimistic, therapy induced but also a byproduct of being in a perpetual state of pins and needles.

I’ve been rendered emotionally volatile, seeking to purge vexing surface sentiment to suppress a nuclear explosion.  …..BOOM

My body has been systemically compelled to shed its mortal life-force and be twice-replaced by someone else’s. You can see how I could develop separation anxiety and a general sense of fear that has me clawing at the walls – my manic panic. 

A strobe light is radiating in synchrony to lifes’ metronome, my mechanical heart valve — delivering a punch of colour and never-ending reminder that I was re-tuned… Sometimes I wonder whether my defects were a result of design or malfunction and what that says about intervention; nonetheless, I am grateful for it.

As I wind down, I remain uninfluenced by others emotions or environment – a neutral reflection from the comfort of my couch, alone and uninterrupted. What once would have been an evanescent thought is a now a documented unhinged rambling. 

I’ll return to my purkatory, waiting for the java to brew to keep me lucid -my bi-daily potion.

As you were.

The prolific sound of the slithering serpent engulfs my hearing, a constrictor that encircles my mind, toying with me as it tightens and loosens its’ hold. Its’ impending presentation sends a chill down my back, as scales push up against my flesh, hissing to make its’ presence all the more known. Black as night, it lurks in the shadows and then opens its’ mouth like a display case, revealing piercing protruding fangs, dripping venom that could easily devastate my fragile body, but then retracted- like a gun that is aimed but not fired. The satisfaction of the game illuminates its’ glowing green eyes, all the more disturbing is that it seems to thrive, a true formidovore (feeds on fear).

This is the anxiety that I harbour, a heavy weight that is affixed to my mind, intent on keeping me down. An effort that I reject and counter at every attempt – necessitating my ever-present state of high alert.

This is a “pet” that I unconsciously adopted and that has no business being domesticated, as wild and unpredictable as it gets. Hades lapdog.

Ssss

The seething movement commands my hair upright, walking on pins and needles in anticipation of an attack. Am I being trained or conditioned to defend myself against such a lethal predator? I need not look very far to see the Rod of Asclepius emblazoned on my wrist, the symbol chosen by Medic Alert to signal my classification as diseased prey? I’d like to think of it as a warrior symbol, an assertion of my commitment to be the best that I can, in spite of my opposition.  

The bruises are worsening, a minefield of black and blue markings dominate my subcutaneous injection sites, a constant bi-daily puncture to mitigate blood clots emanating from my machine-like heart valve. The cold metal nails its way through my skin as I manoeuvre the syringe to eject yet another battle weapon, a potion that stings and burns with each application, a declaration of its’ foreign placement.

I feel suspended on a balancing beam, forever swayed by the wind, some weeks more than others but managing to keep my feet planted. The flavour of this month has been methotrexate, 2 rancid yellow pills that are being used to suppress the riot happening in my bone marrow. A riot that is currently obstructing the development of healthy immature cells that are not being seen in the blood periphery and thus we assume are deleted. In parallel to this plan of action, the steroid taper continues, as does my energy dwindle though I am managing the side effects like the tenured patient that I am. A badge that leaves me feeling petulant but…grateful that my experience sometimes affords me insights that others may not have, and perhaps that’s a good thing. 

Education by way of experience can be dangerous and yet it has always been theory that escapes me without being anchored by application. In any event, I would have been okay being blind to this, to have the good fortune of forgetting but as trauma would have it…that’s not happening.

The symbiosis of patient and practitioner is a delicate web, a dependency that is born from apprehension and fear. In my experience many of these relationships have developed into trust though I acknowledge myself as a member of my own medical team. This means that I am responsible for voicing my thoughts, symptoms and feelings regarding my treatment course and then defer to their expertise to focus that input into a considerate model. 

This is not the default. 

Today is not a great day but it is good. As the commotion settles, as does my distraction giving rise to my heinous mental tenants. I need to somehow force them into submission, rising above the mental trickery that they weaponize. 

Today, I’ll smell the flowers, I’ll take in the scenery and I’ll treat myself to a liqueur coffee. 

I’ll do it because I normally don’t, I’ll do it because I normally won’t but most importantly, because I can. 

Existing is not living.

If anyone is experiencing similar challenges in their recovery, I am happy to lend an open ear. Feel free to contact me through the contact us page below.

My Dearest Marquesa,

Nothing can prepare you for the ardent love that emerges following the birth of a child. As children, we are exposed to notional figments of this reality but the cliche is almost too grand for our developing minds to accept- the zenith of affection, unfiltered, unbiased, undisputed- veritas. 

It has been one year since I vowed that I would walk with you on your second birthday, hand in hand, a change from the hand in heart of your first anniversary. To describe the ache that my heart felt missing your first milestone is inexpressible – just know that no light shined brighter to lead me back to you, my lighthouse.

My everlasting birthday wish for you is that you live happy and true to yourself. In a world of blind compliance, I encourage you to spread your wings and soar, challenge “normal”, exceed expectations and refute any idea that living with integrity is wrong.

Since June 8, 2018, life has never been so right.

The bar will never be set too high because you, my girl, are tall, capable, and I pray faithful in your limitless potential. And if by chance, you think you fall short, you’ll always have Dad’s shoulders to stand on…

So for this year, I’ll make it rhyme, like our stories sound sometime. As for the cast, the star and main- you’ll be my princess, just the same.

You’re one year older, wiser, sly, the sweetest piece of sassy pie. Supporting cast are Mom & Dad, to dry your tears when you are sad, to flair you home and make you smile, as you turn the birthday dial. 

I miss you in the morning and then you come in our room, you run, you walk, you wake me up as “Dad” echoes tried and true.

I love the way you beckon me to come down the steep stairs, to start the day, my favourite way- with you and mommy there. 

I love the way I ask you to do- things that you’ve learned like grabbing your shoes, you’re so smart, true to the tied – whatever you do, I radiate pride.

Sometimes its true, I must admit a bittersweet feeling that you’re growing so quick , I’m struggling to grasp, to catch to snatch – to make every precious moment last..

I like the times we go outside and you take Daddy for a walk, I like the times we sit and draw using your colourful sidewalk chalk.

You keep me fit, the wagons shire, to pull you in your carriage styler, sometimes I hough and often I puff, so you hand me the bubbles to blow some rounds off.

I love the way you answer yes when I ask you, “you okay?”, music to my ears I pray will never go away.

I’m glad I rarely see you sad, though sometimes baby, you get mad-  your perfect smile always beams which keeps me knowing you’re serene.

From walking, started talking, now – telling us you peed, our sprout is now a toddler, overnight it seems.

We’re 2 years in, enchanted and blessed, to watch you grow into our princess.  From fairy dust, to make-believe tea, our Coronet Gemini baby exceeds.

No matter what happens, I’ll always be close, alive in your heart- where I’ll grow old. Whenever you’re down and feeling hurt in some way, I promise to take it and heal it away.

To my beautiful daughter, on the day she turns two, two years of foundation are founded for you.

Spring forward, and leap with all of your might, fearless and fearsome to fly lifes’ kite. 

And if down the road

You might hit a tree, that gust of wind took it and sent it to me- I’ll grab it and fix it and put you on track, my daughter, my sweetheart, 

Dad has your back. 

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