Securing The Line

What I’ve come to appreciate about writing here – about having this safe space dedicated solely to the medical, the intimate, and the personal – is the ability to gradually expand on the backstory; to provide a more complete picture, a better understanding, of the entire medical journey.

It was a wrenching decision to publish the visual timeline, but I know that for those who’ve not lived it, to fully grasp what I’ve experienced, those raw, unvarnished images were necessary.

Beyond that, the photos can serve as a point of reference as I revisit those years, touch on events which shaped my current approach to recovery, transformed how I perceive myself, and can help shed light on why, as difficult as the physical aspects of recovery have been, what’s proven a far greater challenge than rebuilding the body is rebuilding the confidence.

Paramount to this recovery has been the matter of trust: Trust in my medical team, trust in the process, and trust in my body’s ability to persevere. Had I not been through the intestinal rehabilitation process once before, the past two years would have been far more daunting than they have been. That’s not to say the process to this point has been heartening, but knowing what to expect — keep challenging the gut, keep forcing it to deal with what it cannot, and the intestinal lining will slowly regenerate, the gut’s ability to process nutrients will return, and the physical recovery will follow — allowed for a certainty I was without in the previous go-round.

I knew it was only a matter of time before the gut kicked in, but waiting for that moment – pouring myself into the recovery day in, day out for two years without once deviating from the plan, to no avail – was excruciating.

The series of setbacks,  each which saw gains months in the making lost in a matter of weeks, had me blaming myself for my body’s lack of cooperation; I racked my mind for ways I’d somehow sabotaged the process.

When I’d become restless, agitated by the perpetual stagnation, I’d revisit emails between my gastroenterologist and myself from 2008, when the initial phase of the (first) GI rehab was rife with backward momentum. As the caloric load climbed, the weight still continued to plummet.

I wrote: “This is it, isn’t it? My body is going to starve itself to death. It’s too late. We’re too late. It’s only a matter of time.”

I received a reply of reassurance, told this was expected and that soon the tide would turn. “The deterioration of your gut didn’t happen overnight; neither will its revival. You must give it time. Trust in the process.”

It was following the pneumonia/sepsis – the most recent and by far, most frightening complication  – that this recovery’s momentum shifted. I’m not sure what it was about those few weeks that breathed new life into the gut, but as I recuperated from the internal toxicity, worked to regain full lung capacity of the collapsed lung, the gut – having itself suffered from the sepsis – not only regained its (at that time) still-quite-limited function, but began to improve on it.

I was once again beginning anew: every post-severe complication acts as a physical-recovery reset. And though I was roughly 10 pounds heavier (92 pounds) than I was a year prior ( 85 pounds, the previous refreshed starting point) I was still 40 pounds shy of my 2013, heading-into-surgery state (130 pounds).

Since discharge from the pneumonia/sepsis hospitalization in March, it has been nothing but progress. I’ve been able to reintroduce foods which, even when pureed, my gut had long-been unable to process, which has allowed me to rely less on meal replacements (between-meal meals in the form of Boost) for adequate nutrient uptake.

I began to chart solid measurable gains, and not just at the gym, but on the scale.

My weight is taken in a(n as) fasted (as possible) state — in my case, on the 24/7 intake cycle, the point between two specific meals (my 5-hour grace period) — and in the nude, as to control for every possible variable. Even so, as the weight began to climb without even a day’s relapse, I began to request double- and triple-checks to satisfy my mind that this wasn’t a fluke; wasn’t a temporary glitch of the scale.

As weeks turned to months and the digital readout inched closer to displaying triple digits, and after finally hitting that crucial 100(.4!)-pound mark, it became undeniable that yes, these advances were real, the gut had finally ‘woken up’, and full* recovery is not only possible, it will once again be achieved.

This recovery process will have an end, not just in theory, but in reality.

*Full recovery, of course, might not be recognized as such to those unfamiliar with what I’ve been through. For me, a full recovery means the body having regained the lost mass, (what’s left of) the gut having regained the capacity to maintain weight and sustain life, and me having rebuilt athletically, able to continue my lifestyle, even if I do so independent of any competitive sphere.

I’ve come to accept that I will forever be restricted to a fully-pureed intake. There is simply too much internal scarring, too much irreparable intestinal trauma for the resumption of even a relatively-normal diet.

Even if the gut were to somehow regain full processing ability, the threat of obstruction remains high. I’ll always battle with adhesions, but should another full obstruction hit and surgical intervention be necessary…

To quote my surgeon: “You cannot afford to lose any more intestine.”

In time, after the weight has fully returned and stabilized, I’ll be able to resume a normal-ish (not round-the-clock) intake schedule. It’ll always be a delicate balance, having to adjust according to the fluctuating status/function of the gut, but in dealing with this daily uncertainty throughout recovery, I‘ve learned how to adapt, react, and adjust when challenges arise, so  I have no doubt in my capacity to become as independent, as productive to society as possible.

I can say with certainty that by the end of 2016 (though I’m aiming for this time next year) I’ll have fully concluded this  recovery. The gains, though slow, are steady, and I expect they’ll continue apace through to the finish.

In 12 months’ time, while my appearance will have returned to normal (I’ll look like me again, the Alheli in my profile picture) how I continue to see myself, my confidence in that appearance, will require more time to heal.

The image of my 2004/2005 state of emaciation is taken from behind, but if you compare that 58-pound body to the 85-pound head shot from May 2014, I’m sure you can deduce how I appeared from the front.

Upon seeing me, people either gawked in horror or desperately averted their gaze. Every now and again, when a given memory is triggered, my mother will recall what it was like. When having blood taken, for instance:

“Do you remember,” she asked, arriving home from her appointment, “when we’d walk in for your lab work, and everyone in the room would go silent? They’d just sit and stare. Then, it seemed in unison, every head would turn away. Some faces, streaming with tears. Do you remember that?”

Yes. I remember quite clearly.

And it happened often, everywhere I went. Those reactions were understandable, though. Those are unconscious, human responses. When you’re suddenly faced with someone who’s flirting with death, how DO you react? No one wants to be seen staring, but neither does one want to be caught looking away in revulsion.

There is no proper reaction, no single appropriate response. But when you’re the subject of the scorn, repeatedly looked over with repugnance, that scathing rejection is internalized. Over time, it becomes an automatic sensation, one which encapsulates your entire being, every time you’re looked at.

Every time.

It’s why, even after I’d regained my health (as seen in the images from 2010 through 2013) I continued to feel like the gaunt, emaciated repulsive figure from ’04/05. If you ask those who know me best here in Calgary, they’ll confirm that my automatic reaction when asked to get in on a picture, is one of fear.

They’ll attest to my self-hatred, my non-existent self-esteem, my chronic sense of unworthiness.

It’s only now when I look at those ’10-13 photos that I can appreciate how healthy a state I’d returned to. How not-at-all-terrible I looked. Only now can I see how others saw me then.

That ’04/05 skeletal figure still haunts: When I have nightmares, I dream of being back in that state. In those dreams, I’m once again starving to death; desperate for help, desperate for answers, searching for food, begging for life.

Every nightmare is a relived march toward death, one which revives the surgical traumas upon awakening.

It’s those post-nightmare days where the world acts as a trigger: Any random thing can – and does – set the stage for a full-blown death panic attack. But I’ve become quite adept at managing, so I do what I can to simply get through those days, trusting that tomorrow will be better.

And it always is.

Which brings me to Project Smile.

One the few aspects of my physical self I’ve never been ashamed of is my smile. Knowing I’d lose it without the necessary intervention, the falling through of funding threatened to prove the ultimate devastation; that final emotional blow from which I’d not bounce back. Project Smile was my only hope, and had it failed, it might have become the tipping point for the mental burden.

When I said you changed everything — that was an understatement.

Suffice to say, my smile isn’t all that was rescued.

As I head into the grafting surgery this morning, the first (and most intensive) of the many procedures this treatment will entail, I’ll be thinking of all your messages, your love and encouragement, your understanding and acceptance.

Today, Project Smile officially joins the greater recovery process. And with that process now in full swing, my body finally onside, that floating end-of-recovery finish line has been secured.

And I trust you’ll be there, so we can cross it together.

One thought on “Securing The Line

  1. Thinking of you Alheli with admiration and awe for your strength and determination. And, when you come out of this, I will have you here in Toronto to kick my ass into the gym!!!


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