On life, death, and grief

When it comes to mortality, I’ve wondered what could possibly be worse than the horrifying inevitability of death. The answer, it seems, is the death of someone who matters most, who you love so profoundly and deeply — someone you’d give your own life for in a moment, who you cannot imagine being without.

That someone is my grandmother, and very soon, her incredible life will end. I don’t know how I’m going to exist without her, and if I’m honest, there are moments I’m not entirely certain I want to.

What happened was sudden and could not have been predicted or prevented. Had it happened to a younger woman, the body would have had more of an ability (or a chance) to recover. But a woman in her 92nd year of life, as fit and healthy as she was, simply couldn’t withstand the massive stroke and subsequent seizures which resulted in a sustained brain bleed.

Over the past week on a stroke recovery unit, after having spent the previous week in the ICU, she – and we – worked so hard to bring her body back, to regain use of her right side, her ability to speak and swallow and breathe. But what small gains could be made simply aren’t enough to sustain life.

Her body cannot recover.

I’m grateful for the time we had together last week where, hour after hour, we quietly held hands as I stroked her hair and, when not kissing her beautiful, soft cheeks, I simply held my own cheek to hers each time a quick tilt of her head beckoned I do so.

Even in silence, through her deep, purposeful and powerful gaze, she said so much. The considerable energy spent putting words together were to tell me she loved me and call me “kotki” — kitten in Polish, which has been her special name for me since forever.

When people matter to me, they matter. Those I welcome into my life will matter for different reasons, with relationships ranging from entirely professional to deeply personal.

My grandma, for so many reasons, has always mattered most. That will never change. She considers me her daughter, and I look to her as a mother. We are the very best of friends.

I’ll write much more about her in time, and detail just why she and I share what we do. I’ll do my best to introduce this remarkable woman to those who didn’t have the privilege of knowing her firsthand.

Right now I’m grieving, and getting through as best I can. Which is to say, I’m having a very hard time, and my heart hurts in a way I’ve only experienced in nightmares – nightmares about her dying – but there’s no waking up from this anguish. It’s brutal and destructive and overwhelming. I don’t know how to work this through, and no one can offer guidance or reassurance because the only reprieve for what’s happening is for it not to happen — and that’s not an option.

The only way out is through, and I know it’s going to get harder for a while yet. Though hard to believe at the moment, I do know logically this sorrow will, in time, become a little lighter. Become bearable, even, in a way that, right now, it’s certainly not.

I had to return to Calgary this week for my own medical things (on my way to the hospital to see grandma, I got a call on my cell to come in for testing on my heart…) and I will find out Thursday when I can return to Ontario for a solid few weeks, or until everything plays out. If not this coming weekend, then certainly before next. My doctors are working hard to make this doable.

Palliative care is helping transition grandma home where she’ll live out whatever time she has left surrounded by friends, family, her kitties and her gardens. She’ll be out of hospital and back where she’s at peace tomorrow, and I will be there with her, by her side again, just as she wants, as soon as I can.

I know there’s nothing unique about this. Death is inescapable, the accompanying grief a universal experience. Life will go on, as it does and should, for everyone else. I’m just unsure of how to resume my own without her in it.

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Learning to live with the body you’re in

I didn’t expect the amount (and sort) of private feedback in response to this piece for the Citizen, but it’s encouraging to know people feel comfortable in reaching out and asking questions. While unfortunate so many hesitate to address these matters openly, I understand that apprehension. It’s an incredibly personal thing.

I, however, feel a duty to help where I can. Over the years, I’ve spoken at athletic conferences and provided feedback to coaching organizations on how to effectively push a vulnerable athlete without damaging them, and how to address things like body insecurity without coddling. I really don’t mind being candid, I’ve just never really had cause, to now, to write specifically on the issue.

My own background on this, for those unfamiliar and who asked for a bit of a recap on where I come from on the matter, can be found beneath the main points addressed.

First, the Carleton scale controversy:

I come at this specific issue with an understanding of the mindset which drives eating disorders and the experience of what feeds and perpetuates insecurities. I was both a coach and a mentor to young female athletes – developmental (pre-competitive) stream – and served as a conditioning specialist for the younger high-performance competitors. In that capacity, when issues around body image or weight arose, I tried to act as the sort of figure I wish I had available to me early on.

To be clear, though: Eating disorders are quite individual and unique to sufferers, and are a mental illness. That requires professional help. While you can’t prevent someone from developing an eating disorder if that’s destiny, you can avoid playing a role in it.

So, to answer a number of questions about Carleton’s initial decision to remove its scale, and the broader question of how the fitness industry fails people – whether they’re overweight and struggling with body image or dealing with some sort of disordered thinking around food – on the weight issue:

The scale can be a problem in gyms when it comes to forced weighing. Many athletic centres require an ‘assessment’ (weight, body composition profile using sham devices and questionable methods) if a client signs up for personal training. That’s a problem. If someone does not want to be weighed or measured, they should absolutely not be pressured into doing so.

The best measure of progress in the gym is performance. Be it cardiovascular gains, strength gains, improved flexibility, agility, balance — all are trackable without a scale or tape measure.

In my view, scales are important. The gym scale, however, is largely useless for precise monitoring. For a true weight, you must step on a scale in a fasted state (first thing in the morning, for instance) in the nude. That’s your body weight. When you’re weighed (or weigh yourself) at the gym, what you’ve eaten during the day, how well hydrated you are at that moment, the brand of shoes you’re wearing, your workout attire, will all affect what the scale displays.

That’s not reliable.

If people choose to monitor themselves that way, fine. It’s a quick and relatable measure. But it should not be forced on anyone. And as I mention in the piece, the scale is of limited value, as the numbers provide zero insight into fitness.

If someone, over the span of a month at the gym, loses 5 pounds, great. But — what have they lost? Weight loss is not fat loss. If the weight lost was primarily lean body mass, they’re no better off, no healthier or fitter, than they were 5 pounds heavier.

So it’s not wrong for Carleton to have encouraged a shift from focus on weight. The problem is they didn’t offer any legitimate reason for yanking the scale, and didn’t seem to understand the danger of suggesting girth measurements – which change much slower than weight does and often causes greater anxiety – as an alternative.

Even with the decision reversal, those who use Carleton’s athletic facility are no better informed, or better off, than they were before the whole mess.

Next:  What’s better than “body positive” in addressing body image and insecurities? And how can you help someone lose weight or improve fitness without seeming to body shame or feed an eating disorder?

It’s a fine line to walk, but it can be done. What’s key is to not compare any one body to any other.

Ever. Ever ever ever. Got that? Don’t do it.

Each person is built differently, and their genetic code will determine how quickly (or not) they respond to a given exercise or training regimen. And so many factors, right down to bone mass, play into what one’s body will ultimately achieve.

Whether it’s someone who’s overweight in the gym hoping to slim down or an athlete training for a specific cause — each person has a baseline in performance and body composition, and improves from there. The only comparison should be from the individual’s previous day, or week, or month, etc. If there’s been an honest,  sustained effort and change doesn’t happen, then you tweak the program. You don’t compare to someone else’s results.

And it can’t be stressed enough: the gym is where health and fitness is gained. The kitchen is where weight will be lost or gained. You can’t outrun a bad diet, nor can you improve athletically  on a paltry one.  Food is not an enemy, it’s necessary fuel. Understanding proper nutrition – which means not demonizing any specific food or nutrient (see: carbs, sugar, gluten, etc) – matters.

As far as body image is concerned, what’s better than some never-ending quest to achieve Full Body Positivity is developing a sort of body literacy. No one has to love their body, and not everyone will, but it’s important they learn to live with it. And understanding what one can and cannot control helps alleviate some of the self-hate, and sometimes guilt, over not being able to be or achieve what they think they should.

Of course in direct athletic competition one person will come out ahead of another. But in the gym, and in training, the focus should always be on achieving, and surpassing, one’s own best.

Knowledge really is power in so many areas here. Education is key. The problem is, those doing the teaching are often terribly uninformed themselves on these issues, as evidenced by the athletic department’s move.

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My own history: 

I was very young (onset, age 11) when I developed a severe eating disorder (anorexia) which was compounded by a sort (not one most associate with the term) of OCD . The two played off one another, and it’s that specific OCD – a personally unkind and unforgiving brain – which fuelled a sort of relapse, albeit brief, at age 14. I needed to get a better handle on that, and with further guidance, I did.

Full recovery, for me, was only possible because of the relationship and trust between myself and my dietician. It required brutal honesty from both sides, and an ongoing dialogue to address things as they arose.

For me, directly challenging what my young, frightened mind insisted was so, trusting the guidance from my dietician and, with her, working though the anxiety of the treatment and recovery process until the results disproved those fears, was the answer.

During that period, I often wished that I could just eat anything without ever gaining weight. How wonderful that would be! And apparently, would somehow resolve the relentless hate I always, from my earliest recollection, had for myself and my body.

It’s a shitty irony that so many years later that nonsensical wish would become a reality for a time, and almost kill me.

Why do I care so much about fighting stigma around mental illness?

Because it’s the stigma from having had an eating disorder early in life that prevented my then-doctor from taking it seriously when, heading into my 20s – a time I was entirely healthy, excelling athletically, and so very happy – my intestines began to fail, and the first symptom, weight loss, was assumed to be something else.

That intestinal disease had nothing to do with my childhood, but was a genetic inevitability. It was only a matter of time before it fully manifested, but if treated promptly and properly when it did, it would have been entirely manageable. And my life, for the most part, would have been completely normal, and continued along its intended track.

Instead, medical malpractice allowed the disease to progress and destroy a good part of my intestines which, after proper diagnosis and a second-to-none team of experts, resulted in years of treatments and surgeries and intestinal rehabilitation, including the removal of a good chunk of my gut, piece by piece. (Gut being intestine, not stomach, as most associate that word.)

Then, after rebuilding physically and athletically from absolute emaciation, what was to be a final (and quite major) intestinal operation in 2013 ended in disaster, and almost killed me — again.

And I had to do the intestinal rehab again, and rebuild the body again (made more difficult with  a number of medical setbacks relating to various organs, as well as further intestinal surgery) and learn how to live with an even lesser-functioning, ever shorter gut.

That’s the recovery I’m nearing the end of.

Life to this point hasn’t been easy or gentle, but it had no obligation to be. I do try to make the best of things, though, and that includes using my experience to provide insight or knowledge on different matters when asked.

I hope I’ve been helpful to someone here.

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On Getting Through

I understand why people react to others’ accounts of living with (or overcoming) mental, emotional, or physical hardships with words like ‘brave’ or ‘strong’, but it’s important to keep in mind that each person’s unique history helped shape their ability and approach to getting through a personal challenge.

No one is weaker or stronger, braver or less brave, than any other. No single person can or should be used as a standard or ideal for how (or, barring self-destructive behaviours, how not to) manage.

That said, because many had asked, here are the guidelines I set out for myself years ago, copied word-for-word from a journal, which I continue to hold tight to.

I have my reasons – my own history / experiences, upbringing, inherent attitude – so anyone reading who does things quite differently, know this is not commentary about you or your way of dealing.

There isn’t a right or wrong way — there is only the right-for-you way.

That’s something you have to craft and discover for yourself through trial and so much error. But there is a way for everyone. It just takes time and an honest effort to settle on it.

Here’s my personal guide to living as best I can despite all else.



You are not special.

What you’re going through is unique to you, but everyone deals with hardship – physical, mental, emotional – at various points in life. Don’t allow anyone to feel they should be particularly gentle with you.

You are strong, and resilient, and should seek to be treated as such. Embrace being challenged, welcome confrontation. You’re a capable woman, you don’t need your hand held.

Welcome empathy, appreciate compassion, but reject pity.

Don’t make excuses.

Be honest with yourself and those around you with what you can and cannot handle at a given time. It’s OK to request leeway when absolutely warranted, but the use of hardship  as a crutch will, over time, atrophy the resolve.

Resilience, like muscle, must be exercised regularly to maintain its power. And like a muscle, it too requires periods of rest for optimal performance.

Request space or time when mental or emotional fatigue sets in, but do so out of necessity, never habit.

Own your shortcomings.

If you’ve allowed personal frustration to slip over to your interactions, if you unfairly attack, criticize, or demean someone or something simply because, at that moment, venting felt OK — apologize.

That is your failure and no one else’s.

Accept that, despite your best efforts, this will happen from time to time, but don’t let it pass without owning it and making amends if you can.

Learn from each time you fall short here. It weighs on you afterward for a reason.

Do something.

On the hardest days, when the biggest achievement may well be having made it through the brutal 24 hours, don’t succumb to paralysis.

Find or create some purpose, no matter how trivial, to help get through to tomorrow.

The trauma and panic/anxiety will command the day regardless — do what you can in spite of it.

If you need to cry through every moment of doing whatever it is you settle on, that’s fine.

But never do nothing. Do not dwell.

Reach out.

There will be moments when you’re overwhelmed. That’s not weakness or failure — that’s human. It’s OK to lean, even if just for a moment, on the shoulder of someone you trust.

The times you cannot be alone, don’t be. You don’t need to be.

Be frank. Be honest. Be gentle.

Those seeking to better understand your experience may hold back for fear of over-stepping, imposing, or offending. They don’t know what or how to ask.

This is a two-way street. Make it easier by being available and open to discussion. When questions are asked in an awkward or clumsy manner, remember there’s no ill intent, but a genuine effort to learn.

Dedicate time and patience to these conversations. They matter.

And always be grateful that anyone bothers to care. They don’t have to.

“Tomorrow will be better.”

If today is particularly trying, remember – it’s just a day.

One day.

Tomorrow will be better.

And if it’s not, there will be a tomorrow which is. No matter how many days it takes to get there, you will reach that tomorrow.

 

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Finding Enough

 

No matter the goal, everyone strives toward some idea of enough — a measurable something which grants some payoff for the effort: qualified enough to secure a coveted job; educated enough to act an authority on a matter; skilled enough to edge out the competition in a test of physical prowess.

In this quest, throughout life, we will all come up short. While some fail to achieve enough due to lack of commitment or effort, others are hindered by circumstance where, all else being equal, another was simply better suited; despite having made the most of one’s available opportunities, another had access to superior education, experiences, etc.

That inability to achieve enough due to what you cannot control is the harder loss to take.

Failing to be enough for someone else, particularly when the shortfall is something beyond one’s ability to directly change or improve upon, is crushing. That hurt, though, is a necessary part of life. Heartache is unavoidable, and heartbreak is inevitable. It’s part of how we grow emotionally and forge ever-stronger relationships.

When you’re hindered from moving beyond that sort of personal hurt, when the years normally spent exploring relationships – growing in both experience and confidence – are dedicated instead to basic survival, you’re faced with a gulf that cannot be easily bridged once life resumes.

However necessary the pause on one existence, the lives of others carry on. Opportunities expire, relationships cool, and a few who matter deeply will fall out of touch.

Though I wholeheartedly celebrate the milestones of my closest friends and family, I’m reminded daily of what I will not be and cannot offer. As a woman, I feel both inadequate and a failure, and can’t help but wonder — if I wasn’t ‘enough’ before things fell apart medically, how could I ever be enough now?

This has recently weighed on my mind and heart, but that I find cause to consider such matters is arguably a positive. It demonstrates just how far beyond mere day-to-day survival things have progressed, where I’m now at a point of mapping out some sort of future; considering the possibilities of three-, five-, ten-years down the road.

Medically, things are spectacular. Or at least, are as good as they can be. My weight is a solid 110 and holding steady, and if I regain another 10-or-so pounds over the coming year, wonderful. If not, though, this 110 is enough for my organs to remain healthy, which is key. I’ve settled firmly into my new forever way of eating which has allowed what remains of the gut to maximize digestion and absorption (see: that solid weight) and protect from further obstruction.

Though there is one band of adhesions (internal scar tissue) proving a constant challenge, chronic discomfort is all that’s come of it. And if that’s the way it remains, I can undoubtedly manage. Further intestinal surgery, should those adhesions cause me to obstruct, would be catastrophic. I can’t afford to lose more gut, and surgery only begets more adhesions.

A chronic discomfort is entirely fine.

In my last update, I mentioned a shifting discolouration around areas of my face which had become a persistent bother. Bringing a dermatologist on to my team proved a wise decision, as she was able to help properly diagnose the hyper-pigmentation, indeed caused by the endocrine abnormalities combined with the thyroid malfunction. It causes a sort of hyper-reactive pigment cell for which there’s no cure, but is entirely treatable.

For two months at a time, followed by a one month break, I apply a potent compound to the affected areas to break down the pigmentation, and over that I slather the strongest available sunscreen to prevent as much light from entering those cells as possible. This helps keep them dormant, as those cells are primed to flare and any UV penetration will trigger that reaction.

After the first three-month cycle of treatment, the areas of abnormally-darkened complexion were completely gone. It proved an incredible relief to know this nuisance will be so easily managed.

I had my final ENT follow-up, and my surgeon was quite pleased with the outcome of the tricky operation I wrote of last. That surgery ran a significant risk of me losing sensation (both feel and taste) on areas of my tongue or damaging key nerves. But all seems to work as it should, and there’s been no indication for need of any further treatment here.

There is, however, some lasting impact from that unexpectedly difficult experience. For whatever reason, the brain latched onto the taste and smell of the gas pumped through the mask just before IV anaesthetic is administered, and has since associated that distinct taste/odour with the collective hardships of that particular surgery and its immediate aftermath.

So when it emerged there was a significant setback in the Project Smile treatment, one requiring another aggressive surgery, what bothered me most (of all things) was having to deal with that gas.

Medical trauma presents itself in the strangest ways.

It was the summer months when an otherwise-routine scan – prompted by one just-treated tooth which, in the end, would require a root canal – revealed the main bone graft, the primary surgery which set the entire Project Smile treatment in motion, had failed unexpectedly.

There hadn’t been indication of a problem – no pain or discomfort – but for whatever reason, a good portion of the graft was resorbed by the body. That is, the large section of diseased bone which was replaced (and area rebuilt and solidified) has been broken down and absorbed. It’s something that can happen with grafts, but was not expected to happen here, or at least not to that extent.

It was a frustrating blindside.

My oral surgeon dedicated a great deal of time to reviewing my case and weighing the options of how best to proceed toward that proper, lasting and permanent fix, and in the end presented this way forward: He would open up the area, prepared to aggressively re-graft, repair, restructure and rebuild with the help of special synthetic material, but would only proceed if there was enough of the original graft remaining to build upon and work with.

If there was too much resorption of the area, as an MRI had suggested, he would remove the underlying implants and structures solidifying the area, close me up, and rebook to do a from-scratch re-graft, but would take bone generously from my hip.

We proceeded hoping for the best possible scenario but were both quite prepared for the worst. For once, though, surgical fortune was on my side.

There indeed remained just enough of the original graft for my surgeon to work with, so he was able to proceed as throughly and aggressively as hoped. The surgical team were prepared for the going-under difficulties, and they helped make it as smooth for me as they could.

Everything went incredibly well, and the latest post-op scan showed just what a tremendous success the surgery was. It bodes very well for the treatment outcome.

I’ll have another small procedure in February which we’re going to try without general anaesthetic. We’re prepared for my body to do its going-into-shock thing, but I’m determined to work it through because right now, having to smell and taste that gas is the bigger bother.

Pain, I can deal with.

In March, should all heal as hoped, the work over the graft can begin again, and come fall or winter of 2017, the entire Project Smile treatment should be complete — as will the overall recovery.

Meanwhile, the athletic rebuild and physical recovery continues to power along. My heart and lungs feel incredibly strong and respond without hesitation when I challenge them, and my body is muscular and increasingly powerful once again.

There remain restrictions — I’m bound by the gut in timing (there’s a window between two specific meals where it’s settled enough to be truly active) and must adhere to a limit in frequency/duration to ensure adequate rest for a body which no longer stands to benefit from going that extra mile.

But I make the most of the time I’m allowed, and it’s heartening to see results which reflect my efforts. In terms of ‘enough’, I am again enough here.

Physically, as an athlete, I am enough, and I’ll only continue to make gains. With sport, there’s never an end to advancement, there’s always room for improvement. And that steady, measurable progress is profoundly therapeutic.

To be physically frail is to be intensely vulnerable, and that sense of weakness – a complete and utter helplessness – is horrible. It’s how you feel when you’re dying, and how I feel in the recurring nightmares of varying states of emaciation and confrontations with death.

When I develop a fever or catch cold, where others can simply make some tea and toast and snuggle in on the couch, my brain immediately flashes back to that frail state and I’m consumed by the death-panic.

When I physically push my body to its limits, force it to perform and behave athletically in the ways I demand, I take back control. I may never again complete in any sport, but athleticism continues to be an integral part of my emotional recovery and mental well-being. I work alone and quietly, and I work hard. Those precious hours are my outlet and my escape, and when I feel I don’t belong anywhere else, I still belong there.

There is reason and purpose — and so much comfort in being enough.

I’d hoped to branch out here in 2016, to write about various things that matter, explore what worries me and why, and maybe help explain why some experiences stubbornly linger as other moments fade without second thought.

The year was far heavier medically than anticipated, so dedicating time and emotional energy to that idea wasn’t feasible. 2017, though, will be different. It WILL mark the end of recovery and treatments, and I will have the time and cause (and will find the courage) to write more here, beyond mere medical updates.

I always worry, though, about ruining things (what things? I don’t know) by writing here, or writing about myself and my experiences. I worry that those who read will feel different toward me; I worry about making things awkward when they needn’t be.

This is just a space for me to write things through. A non-physical outlet.

Still, I worry. But I also trust — trust that those who read will understand, and forgive, and accept me just the same.

And perhaps, for all my shortcomings, find I’m somehow still enough.

If you’ve made it this far, thanks so much for being here and for reading. I look forward to continuing this journey with you through 2017 and beyond.



Direct link to Project Smile, for more information, or to contribute: www.gofundme.com/apsmile

 

 

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Trial and Error

 

Though I didn’t expect the experience to be entirely without issue, I honestly thought this surgery – or more specifically, the process – would be easier.

Maybe it’s because I felt un- or under-prepared and unfamiliar with nearly all involved: This was not my usual medical team, but a new specialist and surgeon, and a different hospital entirely from my usual treatment and surgical home base, meaning new nurses, foreign staff, and fresh residents — none of whom knew me, and none I could look to for reassurance or a familiar face, who’d been through everything else, able to recognize and understand if past trauma presented itself.

And it did, for whatever reason, immediately.

Sitting in admitting, while relaying my personal information and other details back to the receptionist, waves of nausea rolled across my shoulders and down my back; strangled round my throat and branched up my neck, behind my eyes and across my temples.

“Breathe,” my mom told me.

Breathe.” A simple word she repeated when panic hit as I lay under intensive care, and one she often returned to in the months that followed. Now, in the lingering aftermath, it’s more a fallback mantra offered knowing there’s nothing she can tangibly do in the moment, but knowing that her voice… it helps. It’s familiar, and it distracts, and though that goddamned word immediately provokes – sparks an irrational anger deep in my core – it somehow simultaneously works to defuse and calm.

And increasingly, it’s a word that echoes through my head when alone, and overwhelmed, and a given moment threatens to drag on for eternity.

We made our way through the snaking corridors, past the ICU and through oncology, up to the surgical unit where I’d be prepped for the OR. There were no doors to walk through, just a gaping entranceway with different floor tiles on either side of the walls separating the hallway  from the unit, yet I could not step past the invisible barrier.

I stood rigid, toeing the line where the different floor designs met, and I cried.

This, I didn’t see coming. This has never happened, even in all the dental procedures and oral surgeries I’ve had since the events of 2013, I’ve never been physically paralyzed by panic, monetarily unable to move.

But it finally happened, and I seized up, frozen, before slumping over, shaking, and hyper-ventilating.

I was embarrassed for being such a spectacle, and angry at my inability to stop the body from reacting as the brain commanded it to.

I can’t say I felt helpless, but in a way I felt lost, as if I were about to be dropped on a dinghy into an ocean without warning. I consciously chose to react the only way I knew how: I flipped the mind into survival mode, the same strategy employed during that horrific 4-hour pass fresh out of intensive care back in ’13.

Just get through right now, and then get through today, and worry about what comes next, tomorrow.

As blood was drawn, vitals were taken, the body was scrubbed and stripped, I worked to dissociate myself from what was physically taking place.

How best to explain it… it’s almost like freezing the moment and taking a step back from yourself, or from the situation. So, you’re there, but you’re not as vividly living it.

You’re more watching it happen, from afar. It feels almost as it does when (if you have these kind of dreams, as I do) you’re watching something play out in your dreams while fully aware that you’re dreaming. You know where you are, and know you’ll remember every detail when you wake up. There’s nothing you can do to escape the dream, only know that at some point it’ll end, so you’re left to ride it out until consciousness returns.

That distance, however, lasts only as long as the prep does. Once taken to the surgical holding area where I’ll meet with the anesthetist and charge surgical nurse, I’m again fully present, and again intensely unsettled.

When I try to relax and close my eyes, my brain returns to 2013. I see my mom wheeling me around the grounds outside the hospital and feel the sun’s rays penetrate my skin for the first time in months. I smell the flood-saturated breeze. That gorgeous, oddly upsetting breeze.

I feel the PICC, I smell the TPN.

I’m shaking again.

“Breathe,” mom says.

Nausea hits at the anticipation of the combined taste and smell of the gas pumped through the mask I’ll have strapped to my face shortly, as well as the cold, burning pain of the anaesthetic that’ll be forced through the veins.

I know I’ll have a problem when they try to place the IV — it’s a trigger every time, and all involved in the surgery have been thoroughly briefed, and are fully prepared. They know what to expect, and how it’ll unfold: The brain will force the body to react disproportionately to the situation. I’ll be soaked in sweat, my face saturated with tears, and I’ll physically, quite vigorously, tremble.

It will all be involuntary.

They know not to stop, to not be alarmed, and just keep doing their thing. They know I’m fine, and that they’re not causing the distress, and we all understand each other’s roles in this exhausting scene.

And once I’m in the OR and strapped to the giant T, it all plays out as predicted.

Waking up was thankfully uneventful. However, once moved to a room, the post-op pain reached a threshold no one anticipated, and one which IV narcotics refused to mollify.

I didn’t have the PCA pump, though perhaps I should have, because the torment remained uncontrolled even as the thresholds of Fentanyl and Morphine were maxed.

Any more of either and it would stop my respiration… or my heart.

Breathing was difficult enough as it was, along with swallowing. And speaking was not possible. Because it was a transoral surgery, the entire floor of my mouth had been pulled open so that the sublingual gland, along with the ranula and what turned out to be a secondary cyst – not a tumour –  could be successfully removed.

This left my tongue and the floor of my mouth, right down into my throat, swollen. And all passageways swollen near-shut.

The first night, either due to the variety and quantity of drugs in my system or the lingering trauma (or perhaps a combination of both), was consumed by nightmares of suffocating.

It was a repeating dream of being trapped in a pitch black, square room without escape. The atmosphere was sweltering, the floor and walls burned to the touch, and the air was thick and heavy with heat. Each breath I managed only served to choke, burning my lungs with thick, sauna-like air.

The duration was spent frantically searching for an exit, while every laboured breath drew increasingly less oxygen until reaching a point of suffocation akin to having one’s mouth and nose saran-wrapped off. I violently sucked for air, but nothing came.

It was that point when I’d wake up, screaming, and physically gasping for air, before drifting unconscious again to repeat the horror.

I’ve been in isolation before, bet rarely felt so isolated. I couldn’t talk, so couldn’t describe what was going on, and no one seemed particularly concerned. They may have been working off the assumption that this was another “Nah, she’s just fine” moment, as they (almost) always are, which is why I go out of my way to forewarn of the possible occurrences.

But this one time, it wasn’t one of those. At all. And I had no one, save for the small, carved elephant clutched in my right hand — a precious something my mom brought up from the quirky little gift shop floors below.

That night was hard.

Eventually I landed on a burn unit where a different approach to the not-responsive-to-narcotics pain was taken, and eventually brought under control. The next step was to get the swelling down enough to allow for swallowing of both medications and fluids, to maintain pain control and hydration without an IV, which would allow for discharge and ensure a successful return home to start tending to the neglected gut.

Why ‘neglected’?

No one here was equipped to deal with the intestinal situation or specific demands of the gut, and too long without proper attention runs the risk of triggering a state of dormancy (again) which would be rather unhelpful.

But the gut rode things out remarkably well, and other than a respectable half-pound loss, the body performed beautifully in maintaining its mass.

It’s convenient that my diet already consisted entirely of either liquid or fully blended/pureed everything, so there were no major adjustments to be made or inconveniences experienced in resuming the nutritional intake.

And as the first half of 2016 made undoubtedly clear, that’s going to be the diet I must to adhere to for the long term. And by long term, I mean permanently.

Forever.

My gut has reached the maximum point of recovery in function, in its ability to process, digest and absorb food/nutrients, as it’s going to achieve.

January to June were focused on weaning off the round-the-clock intake regimen, slowly transitioning to less-processed foods (and by less-processed, I mean still whole foods – grains, fruits, veggies, meats, etc – but not cooked down and then further pureed before consumption) in hopes of resuming a normal manner of eating.

Or, at least, a somewhat normal diet.

The trial-and-error process took a toll on the weight (which was expected) as the intestine struggled, and failed, to adapt to the more-normal state food. It simply couldn’t make use of the less-refined status of nutrition offered. Even the extent to which vegetables and grains are cooked down affects whether their nutrients are adequately absorbed or not: Not soft enough before being blended, and the semi-functional intestinal lining cannot process it further.

Same goes for fruit. If not adequately ripe before being blended down (if not simply cooked first), it passes through the gut untouched.

Everything will always have to be blended down before consumption, and that will not change.

But!  I can eat. And I can rely on oral nutrition to survive rather than the alternative of life on TPN  – that IV line to the heart – and that’s what matters.

Because of the extent of scarring both outside the gut and throughout the (remaining) intestinal lining, the threat of obstruction is forever high. Adhering to the pureed intake also ensures I will not obstruct, which means I will not lose any more precious small intestine.

Which, were that to happen, would force me onto TPN, because the gut would be too short to sustain health. Or life. The current weight regain is made all-the-more difficult due to the short-gut syndrome I already have, so you can understand the degree of acceptance on my part.

The dietary experimentation, necessary as it was, was physically exhausting and mentally trying, as it slowly drained the body of the nutrition I’d spent some time working to restore, and cost me a handful of hard-earned pounds I’d regained.

The beginning of June brought an end to that interruption. I gave the trial time and an honest effort, and now it’s known for certain where the gut stands. Though it’s not ideal and is far from normal, I’m perfectly fine with the outcome.

I think others are more upset, or seem far more bothered/concerned than warranted, at the thought of a life adhering to such a way of eating. The thing is, it’s been my normal for some time now. I’m used to it, and I’m OK with it.

Most importantly, though, it provides the nutrition I need in a way my body can use — it keeps me feeling physically well and strong, and mentally sharp, and it’s what will ultimately see me achieve the complete physical recovery.

And regarding that recovery, for the many who’ve asked: All things considered, it’s going well. Yes, there are areas which continue to challenge, but I consistently end each month healthier and stronger than I began it.

The things that bother, bother much less so, and when they infrequently do, they do so with increasing predictably, which makes them endurable and work-though-able.

That said, the single thing which stands apart from the rest, which has remained stubbornly resistant to improvement, is my apparent inability to exist as my current, not-yet-fully-healthy self.

I thought the self-consciousness would wane with time; that the healthier I became, even if not fully well, the more confident in my physical presence I’d feel. But the self-hate has only gotten worse, to the point where it’s become a battle of anxieties at the thought of going anywhere, even with friends, because it’s just so hard to be seen.

There are days when I take Brio to the off-leash park and, instead, walk her leashed along the pathway surrounding the fully fenced-in area to avoid having to see people. Or, rather, to avoid having them see me.

What’s the problem?

There’s shifting hyper-pigmentation on areas of my face (right now, mostly around my forehead and cheeks) from the repeated contrast injections, the thyroid abnormalities and hormone insufficiencies – recently brought under control and managed – which may or may not fully correct itself with time. I’ll meet with a dermatologist in July to see if there’s anything topically that can help should the body not be able to right itself in the end.

Is it terrible? No. But it weighs on me. Terribly.

There’s the loss of my once thick, long hair from the periods of severe malnutrition, that will never grow back the way it was. Though there’s still plenty of time for regrowth, it’s not knowable just how much more (if at all) the hairlines will fill back in, or how much the rest of the head will thicken up.

I’ve never fussed over my hair. Ever. And until recently, never felt the need to explain why it’s so thin, and lacklustre, and generally unlovely.

The growing insecurity had led me to apologize to everyone for the stage of recovery I’m in. In fact, because I was not familiar with the nurses and residents involved in this latest surgery, each introduction was followed by an apology on my part for looking so terrible.

And I still cannot meet with people without pre-emptively apologizing for not looking like my well-self just yet, and cautioning (whether warranted or not) that, in my view, I look horrible, and I’m so sorry for who I am – or how I feel I appear, I suppose – at the moment.

Why? Because I feel so goddamned hideous.

This deeply personal unease is something I’ll continue to work toward find better ways of managing, as the current approach – not dealing with it – hasn’t exactly proved a success in alleviating the discomfort.

All that aside, where I have been able to hold onto some confidence is in my smile. And thanks to the incredible generosity from the wonderful people in my life – from those I’ve long-known, those I’ve come to know, and many more who I don’t know at all – I’ll keep it forever.

It won’t be exactly what it was, or at all perfect, but the major surgeries and grafts are done and healed, and the provisional structure over the grafted area is in place, along with interim protection over all the other teeth on the top.

Once the healing is done from last week’s transoral surgery, treatment will begin on the lower teeth, building up the structure on each individual tooth to replace the absent enamel. If there is root weakness or bone thinning along the jaw, that’ll be addressed at it’s encountered — root canals, crowns, etc. and minor grafting if necessary, but nothing to the extent of what was initially required along the upper palate.

After everything is fully restored to health on the bottom and the bite feels comfortable, the upper provisionals will be removed and the final, strategic implants and structure across the graft will be permanently placed.

The revised timeline goal is to have this entire dental/oral treatment complete by the end of this year, but it may stretch into the front half of 2017. It all depends on how this surgical healing goes, and whether further grafting will be necessary on the bottom.

Project Smile currently stands at just over $51,000 of the required $80,000 cost, so even if I’m unable to raise any more funds to finance the cost (final payment due before the conclusion of treatment) I know I can at least secure the remaining amount through another medical loan.

So, to all who’ve donated: You have saved my smile.  No matter what happens now fundraising-wise, you’ve ensured this treatment will be complete. Which means you’ve saved me from an additional, chronic health issue to wrestle with down the road.

And that means everything. And that matters most. It will make life, all else considered, so much less terrible than it could have been without your help here.

The second half of 2016 will be focused on concluding all treatments, and reaching as close to the target weight as the body will allow. The regain and rebuild isn’t easy, but it’ll be a priority once again now that the diet is forever settled.

And that’s as full an update as I can offer, I think.

I can say with certainty that I’ll be back in Ontario before too long, as the house I’m in will need to be sold to pay off outstanding medical debts. Possibly much sooner than later. But I have my home in Wyoming to return to where I can regroup after this is all over and map out my post-recovery future. What will come next, or where I head after that, I haven’t a clue.

I cannot go anywhere until both treatment and recovery are complete, though. So for the next while, that’s where my primary focus remains. Though, if I’m honest, that uncertainty beyond the recovery is intimidating.

But it’s something I’ll deal with as it comes, which I try to do with all things beyond my ability to control: Control what you can, adapt where you can, and when you cannot do either, manage as best you can.

Right now, with everything, it’s a daily mix of all of the above. And I’m getting through  the best I can.

Direct link to Project Smile, for more information, or to contribute: www.gofundme.com/apsmile

 

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For 2016

When you find yourself isolated, removed completely from those you’d normally see in day-to-day interactions, the solitude is liberating… and somewhat overwhelming.

Being entirely on my own now in Alberta is, truth be told, rather enjoyable. I like my space, and I feel at ease when alone.

That said, routine, as mundane as it seems, has a way of moving things along. Even if it’s just a going through of motions, there’s purpose. A thing to be done, however grudgingly.

There’s reason.

And while the brief holiday break from the medical was a welcome one, it provided much time to reflect (too much, I think) on where I’m at in life, and consider where I’d like to be (or at least, weigh the possibilities) once treatments and recovery wrap up in 2016 — assuming things continue on schedule which, so far as I can tell, there isn’t any reason to doubt.

I thought about this space, and whether to continue writing here or not. Things were a bit chaotic when I penned my last update, and I simply waited too long between posts to allow for proper attention to each section discussed, instead cramming in as much as I could without proper care.

I was surprised by the feedback, by what people wanted to know more about. “I wish you’d written more about the wedding” was a common one. Even from family: “People have no idea about x.  You should have focused on that, written more about that.”

I’m not sure why I’ve pulled back on recounting experience, opting to write privately about so many things and simply tossing it in the draft folder.

I suppose I don’t want to be a bother, or make people uncomfortable should I detail something lived that, to me, is just another part of my greater story, but might be upsetting to read about.

I worry about being looked at as damaged, or as one in need of pity — I’m not, and I don’t.

I worry about who might read and what s/he might think; I worry about those who matter to me, who I’ve come to know, thinking differently of me.

I worry about saying (or writing, I guess) the wrong things, be it too much detail or not enough, about wording things the wrong way, or coming across as a woe-is-me sort, or as writing for any reason other than to simply write.

I work things through, through writing; I write the misgivings out.

I just don’t often publish, in part due to the reasons outlined above. But I want to grow as a writer, to improve on my craft, and that’s not possible without getting into the habit of writing (to be read) more often.

As the medical things wind down, I’m going to need to establish a new routine; find a new groove to fit into. And this space, I think, will be helpful in the transition over the next year and beyond. The last update was heavy on the technical, but there won’t be more of that to add. Aside from the occasional update on measurable progress and ticking of the boxes, or the occasional incident, there shouldn’t be much to chronicle, which provides a perfect opportunity to begin to evolve how and when and why I write in this space.

Though it’ll remain where I post everything medical, I like the idea of moving toward a more casual, personal exploration of experiences and examination of events. A place to write when I need to write, or when there’s something to post about. Which, I guess, has always been an option here. Just, it was never the mindset I’d had — and I like that certainty. That definitive structure.

That explicit reason.

I’m not one for end-of-the-year resolutions, but I’d like to begin 2016 with a fresh outlook on writing; move beyond agonizing over my choice of words and become comfortable with simply  having written.

I want to write with purpose, but allow for imperfection; I’d like to write about things that matter to me, and trust that those who matter will forgive the inevitable shortcoming and allow me to fumble my way through.

I’m not certain who continues to follow here, though when I write I do keep a few people in mind. But if you’ve made it this far, and you plan to continue along with me, I hope you find substance in what I write and maybe, in some way, find value.

I’m still searching for how I can best contribute to the world, given the circumstances. But if you’ve been able to take something away from what I’ve shared here to date, then continuing is entirely worth it.

Words, for me, hold great meaning, and I’ve long cherished Rudyard Kipling’s IF — a poem rich in wisdoms I strive to live up to.

In recent years, I’ve held particularly tight to this section of the verse:

“If you can force your heart and nerve and sinew
To serve your turn long after they are gone,   
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’”

Heading into 2016, a year expected to bring finality, transition, and new beginnings offline, and a sort of evolution here at TMI, I’m going to strive for the following — my own footnote to IF:

If you can embrace the future as uncertain 
And rise above the damage done, 
And find some purpose in your burden 
The illness, then, will not have won.

See you in the new year.

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A Taste Of The Future

I’ve come to approach this home stretch of recovery they way I performed as a dancer — one who’d always mastered the steps, to whom technique came second-nature and execution was essentially autonomic.  No matter the degree of difficulty a given routine maintained, the execution made light of the intricacies and complexities involved. The ability to present an  effortlessness, to mask the physical demand, is the mark of professionalism, and it’s an manner I’ve tried to carry over in communicating the recovery outside of this space.

What happens offline I do try to keep offline, separate from the social and political, and far from anyone else’s mind. But I know in recent months I’ve allowed some of life’s frustrations to slip over into my online interactions (explained below), and that’s something I’ll continue to work on in these final months of treatment and recovery. So if you’ve recently felt slighted or neglected at my hand, know that it’s my failing. It’s nothing you’ve done or invited. It’s entirely on me.

Meanwhile, if you’re one who follows closely but find yourself surprised by something written here, it’s not because you missed something. It’s because this is the only place where I’ll have gone into detail about the past number of months – that ‘keep the offline, offline’ approach, unless specifically asked. (In which case, I’m always happy to answer.)

Given all that’s unfolded since the last update, I think I’ll approach this post a little differently: You can skip to your preferred section of interest, or simply read straight through. But I like to provide as much detail, prefer to go into as much depth as possible (or as necessary) in everything I write, and the medical / personal things are no different.

For ease of reading (and writing), I’ll take this in three sections:

  1. The oral/dental: treatment + details of Project Smile
  2. The overall medical: greater physical recovery/rebuild, the gut, the reproductive/endocrine
  3. The personal:  the challenges, the wedding, the future.

I’ll also include some photos to close out this entry.


The oral/dental:
Highly technical and probably boring, so it’s OK if your eyes glaze over a bit here; it explains this entire treatment: what’s been done, what Tuesday’s surgery entails, and what remains.

The crucial (and most invasive) first oral surgery went remarkably well, as did the entire healing process. The diseased area of bone was removed, bone grafted from my jaw to rebuild the upper ridge, and extractions made where necessary to fully graft deep into / restore the area of localized osteoporosis. It was an extensive undertaking and a number of follow-up procedures were necessary to clip away exposed bone and encourage tissue growth over the area.

But things healed better than anyone expected. With the gut co-operating, absorbing at its most optimal capacity, the body was able to take to (and heal from) the graft without issue.

The relief that surgery brought was immense. I didn’t need to touch painkillers (beyond simple Motrin) post-op because the surgical pain was minimal compared to the daily, unrelenting ache caused by that underlying osteo deterioration.

Now without that constant ache, though, I feel the other areas needing attention. I notice the complete absence of enamel, and exposure of the dentin, throughout the mouth. One positive of being tied to the pureed diet is that I can somewhat avoid contact with certain teeth while eating. (And I’m always, always eating) Be it sweet, hot, cold, sour — everything causes sharp, lightning-like jolts down the shaft of each tooth because there’s no protection for the nerve tissue.

That will be rectified through the (comparatively to the grafting, simple) building up of tooth structure across the entire bottom row of teeth. Where necessary, it’ll be the root canal plus crown approach, particularly where the roots have weakened or become brittle (a sort of dental osteoporosis, if you will) from the repeated, extended bouts of malnutrition while the gut was non-functional and body absent of sufficient estrogens for bone/dental strength.

The upper teeth will have to be crowned, at least, as they were the ones improperly treated by the first dentist to rectify the absence of enamel and weakened root structure. If a root canal is necessary for the preservation of tooth strength and underlying bone, that’ll be the route taken. Those upper teeth will be the next stage tackled (after Tuesday’s operation) followed by the all the lower.

And ultimately the sublingual/submaxillary gland damaged by the cyst (spurred by that underlying, now rectified, bone infection) will be surgically removed, which will bring this entire treatment to a close.

The surgery I’ll have on Tuesday will be to solidify the grafted area, remove screws and insert rods and posts to ensure there’s minimal bone resorption and see to it the entire area is provided all necessary means to remain sturdy, healthy, and strong in the future. Single tooth implants will be strategically placed to add to that underlying ridge strength and if necessary, additional grafting (bone and/or tissue) will be done.

Project Smile remains active, and for me, crucial, though support and enthusiasm has waned considerably. Which was expected, and is understandable, as this is an extended process meaning the sense of urgency, along with the desire to advocate or contribute, has evaporated.

That’s how these things go, and that’s OK. Truth be told, I’m certain those around me are donated out. I simply cannot continue to ask those who’ve given far more than I could ever have imagined – and frankly, more than I’ll ever have deserved – to help shoulder a burden that is entirely mine.

I’m not sure how to go about tackling the remaining funds needed for treatment. Perhaps a formal, proper Project Smile fundraising event in 2016 is the next step.

That’s a decision I’ll tackle in the new year. If you’d like to contribute in the meantime, you can find a link at the very end of this post.

The overall medical: the greater recovery, the status of the gut, and recent adventures through the endocrine system

The physical recovery has been progressing quite well. I’m still required to maintain the carefully constructed, strictly regimented intake cycle, but that’s what’s working,  not only in rehabilitating the gut and regaining the weight, but in preventing potentially-catastrophic obstruction, so I’ve no issue continuing to adhere for as long as it’s deemed necessary.

Though terribly abnormal and inconvenient, a recent intestinal setback served to remind just how beneficial the demanding dietary regimen has been. There was a recent, three week period where adhesions (internal bands of scar tissue) were tormenting the gut. With a simple twist of the torso I’d  find myself being impaled by phantom javelins.

When these adhesion battles occur (as they will from time to time throughout my life) there’s not much that can be done. Cruel as it seems, it’s simply a matter of waiting it out. What’s unfortunate is that in response to an adhesion assault, the gut reverts to its lazy mode. It becomes irritated and inflamed, and digestion/absorption capacity suffers. Though it was only a few weeks, feeling that chronic exhaustion – living in a body once again depleted of nutrients, a vessel both powered down and unplugged for good measure – helped me appreciate how incredibly well, all things considered, I’d been feeling once again.

I’d hit 108 pounds before the adhesion bout. By the time it subsided and the gut was able to resume function, I was back down to 104. So going forward, should my safest bet to maintain optimal wellness be an only slightly tweaked iteration of what I’m doing now, I’ll fully comply without question. Yes, everything will require that much more planning and accommodation, but I’ll be alive, healthy, and functional — three things which were far from guaranteed not so long ago.

You play the hand you’re dealt, and if this is my final hand with the gut, well, I’ll play it to the best of my ability.

Which brings me to this week and some further reshuffling of the cards in the endocrine sphere. As I’ve touched on previously, my genetic hand in life hasn’t proved a winning one in many aspects. And when seeking to salvage some level of advantage here, the odds wouldn’t have it.

TL;DR: inherited primary amenorrhea could not be addressed due to the required intensity of hormone replacement therapy, which wreaked further havoc on the gut. So it was decided to continue with HRT at just enough of a dose to supplement for what the body itself (that base amount required for general health) refused to produce. The strategy: a daily estrogen-progesterone combination, which would allow for the body to benefit from the base-dose estrogen (see: bone health/strength) without accumulation of uterine lining — key to lowering the risk of related cancers.

The problem with this approach, we found out, is that as my recovery continues and the weight increases, the dosage of both the estrogen and progesterone requires constant adjustment. This is easier said than done as it’s incredibly hard on the body, plus the ongoing flux of the two hormones battling for the upper-hand was setting off the brain, triggering panic.

Though there were only a handful of those really, intense panic episodes, being always on edge is simply not a pleasant (or particularly constructive) state to maintain as the body takes its time to sort itself out. It’s because of this internal unrest, this agitation, that in recent months I’ve been, at times, not quite myself. Either unnecessarily combative (if not downright mean and bitchy) or completely off the mark in my assessments or judgements.

I did my best to wait it out, to see if things would level off, but they didn’t. When the physical symptoms began – extreme temperature fluctuations; chronic bleeding leading to severe anemia despite supplementation; drastic changes in blood work – it was clear this method just wasn’t going to work.

For an organ which made clear long ago it had no interest in being useful, the uterus is  certainly making the work-around as difficult as possible.

After working though the options this week, seeing what the body was/wasn’t able to endure, my endocrinologist has set out a new treatment strategy which will begin following Tuesday’s surgery.

If my body takes well to it, it’ll be the forever/maintenance course to follow in terms of supplementing for genetically-driven endocrine deficiencies. If this new approach also proves ill-suited to my body, there is still a reasonable third option to pursue.

So eventually, we will land on a workable strategy here. It’s just a lengthy trial and error process, so more time is needed before I can say definitively that this area has been fully addressed.

But under the care of my incredible team, we’re getting there.

The personal: The wedding, the challenges, and the future

If you’ve followed TMI closely, or perhaps we chat privately, you know to some extent the mental/emotional toll the events of the past decade have had (individually and collectively) on how I perceive myself, where my level of confidence stands, and what I deem to be my worth. It’s not something other’s words can fix, nor one external reassurances can solve. It’s a self-wielded weapon that cuts deep.

Repeatedly. Daily.

But it’s a knife which edge dulls with time. The healthier I become, the closer to me I approach, the less damage it can inflict.

The weeks leading up to my sister’s wedding were consumed by incredible doubt and all-consuming anxiety, and I sought to give her every out I could:

You know, I’d completely understand if you prefer I play a different role, or just attend with other family.

If you don’t want me in your pictures, I will take no offence; please, feel free to leave me out. These will be your memories, after all.

If I’m going to cause people discomfort I really am OK to just keep to the back, or off to the side. Don’t feel like you’re obligated to include me in any prominent way. I will understand.

I’d worked hard, dedicated everything to the recovery, to be as healthy as I possibly could for that September date. But I knew I’d still not be at my best (a minimum 15 pounds short of it, in fact) and the somewhat crude place-filler over the bone graft was the best I could present at that time, smile wise.

I wasn’t going to bail on her, but I held out hope that, perhaps, with all the anxiety that comes with being the bride, maybe she’d decide I wasn’t quite ready for prime time and suggest I sit this one out.

While others were intent on looking gorgeous, I was just desperately hoping to look somewhat presentable, terrified I’d doom the wedding album to the back of the shelf with my presence.

I was the second bridesmaid to walk down the aisle, and while my brain harkened back to the stares in the waiting room, I saw nothing but smiles as I passed each pew. There was no disgust, no rejection, no turning away.

I was just another bridesmaid. I fit into the wedding party just fine.

I was greeted at the front pew by one of the groomsmen with a giant, welcoming smile and outstretched arm. I finally let my guard down, broke into a smile of my own; I took his arm and we made our way to the assigned seats.

That was the moment everything changed. I was at ease, knowing I passed as just another face in the crowd. I felt normal — not ill, not recovering, but just normal, for the first time in ages.

And it was wonderful.

The entire experience: the wedding, the reception, the reuniting with friends and family I hadn’t seen in some ten years, did my heart so much good… and and took a good amount of edge off that knife.

Though a far too short reprieve from everything medical, that trip home served to remind that yes, there is life beyond what I’ve been living this past decade, and yes, there is a future for me once this is officially over.

I’ve spent many years going through treatments and surgeries, working though various stages of recovery, all while half-heartedly telling myself “This isn’t forever. This won’t be forever.”

But after returning to Calgary following the wedding, stepping immediately back into everything medical, I finally felt – truly honestly believed – that indeed, this isn’t forever.

Forever exists across the finish line, on the other side of recovery; and that forever is not only within sight, but now firmly within reach.

This coming year, 2016, mid-to-end, will mark that new beginning. At some point over the next 12 months, guaranteed, I’ll step confidently out of recovery, and firmly into my future.

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A peek at progress made to date (click to enlarge): Two shots from the wedding in September.

 

The Bridal Party

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Mother-And-Her-Daughters Dance

 

 

If you’d like to contribute to Project Smile, or would simply like to learn more, click on over to gofundme.com/apsmile

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