Hope is everywhere. If we gave it form and substance it would stifle us, there is so much of it. It blooms in every conversation I have about my condition. The nerve ablation has created an entire morass of it, aroused not only in me but in all of my acquaintances, friends, and loved ones. Lying awake last night, I realized that those around me have created more hope around my chronic pain than I ever would have alone. If anything, they are in more need of my eventual wellness than I am myself. Some of it is because they care about me, but so much of it is fear. People want tidy explanations for what has happened to me and what is being done to fix it. They want to know how and why and how long. Perhaps because they only confront it intermittently, they have been unable to assimilate the reality of my condition as I have, to navigate the razor-thin boundary between fortitude and resignation. Certainly, that was me before all of this happened.

To others, I am a walking nightmare of the human condition. I was am a healthy, fit individual, brought low by exercise – low-impact exercise, no less – with an injury whose defining features are its intractability and the horrific procedures I have endured in hopes of allaying it. The idea that it might be long-term, or worse, endless, is too much for many of them to bear. They need a timeline they can touch and quantify. They seek out a cause, an effect, and a resolution. They want to be able to take this awful thing that has happened to me and package it into something neat and manageable, a specific and knowable risk, like touching a hot stove, that they can avoid as long as it is properly labeled as such. They want to know when I will be well because they want to know that I can be well. Many of my friends are still young enough to think that modern medicine can repair major injuries like a body shop can fix a car. They need reassurance that I can be returned to the solid, unblemished form I once had.

I see the doubt and fear in their eyes when I use phrases like “developed over time” and “tipping point” and “just one of those things.”  How terrifying to think that such an injury night be percolating in their own bodies right this moment! The physical therapist’s assistant who takes me through my exercises asked me last week if I was in any pain. I replied, as gently as possible, “I am in pain all the time, every day.” I will never forget the look on her face before she recovered and set the heating pad across my shoulder.

So we create hope. But is there anything more insubstantial? Hope is a house built on sand. It makes the unknowable real and brings false clarity to an unresolved future. Hope gives shape to the formless, weight to the imaginary, and substance to the unlikely. In it, the possible becomes probable, lottery becomes strategy, luck becomes goal. Why are we so willing to place our fulfillment on its fragile shoulders? We don its invisible garments, willfully ignoring those around us who tell us that this or that will never be. It is our flimsy bulwark against the dark abyss that stares back at us when we try to peer down the road ahead. We think it lights our way in the night, but it only blinds us in the fog.

Nonetheless, we continue to reach for it, time after time, even though experience teaches us that it is likely to boomerang back at us, edge first, to cut us down. Dashed hope is fate’s most cruel weapon, stinging all the more for that we forged it ourselves. Why do we so readily court its trickery? When will we learn to take our lives in small sips, imbibing our comfort from the tiny joys of more reliable things, a sunrise, the warmth of a pet nuzzling up against us, a favorite song, a difficult project finally complete?  Despite my impressive run of disappointments, I go right back to rub hope’s bottle and call up that malevolent genie with each new prescription and procedure. Cramped in this broken cage, I care less for the character of my companions than I do for having any companions at all. Hope, at least, always takes my calls, showing up at my doorstep on a moment’s notice with its silly, relentless optimism. Like a heavy, sweet dessert, I keep going back for more even though I know I will regret it later.

I get why my friends are so uncomfortable seeing me and hearing me talk about this. In weaker moments, I hate it myself, so much that my mind turns to the absurd, tells me to stop taking all my medication, that no pain is worth the wretched side-effects, the contortions of mind and body that come from swallowing these drugs day after day. I want to step outside of my body – my life – just for a few moments. I want to turn my face up to a warm sun and take a deep, unguarded breath.  So I keep coming back to the hope that tomorrow, or maybe the next day, I will start to get better. I still get hung up on the idea that I just need to hang on for a few more days or weeks and then things will improve. And I feed my friends’ hope, too. I tell them that now that I have had this nerve ablation, “the hope is” that I will be able to “exercise/stretch/heal” and finally “get back to my normal activities,” a list of cherished pastimes that still feels desperately out of reach.

I know their fear; I share it. It is the fear of the unknown. In the days leading up to the nerve ablation, I found a calmness and acceptance that has for the most part eluded me throughout this process. An end was in sight. It was only a few more days and I might be free of this whole business. In retrospect, it seems ridiculous to have assumed that I would bounce up off that operating table and go back to my normal life, just like that. But I made that possibility real with my hope that it could happen. Now, three days later, the enormity of my disablement has been revealed and I once again find myself staring into an obscure abyss.

More than hope, I want answers, answers that doctors and physical therapists have been reluctant to give. I want that timeline, just like my friends do. Not so I can avoid this – it’s too late for that, obviously – but if I know how long I need to last, then I can bear it. And to be truthful, I have surprised myself with how much I can bear already. My pain threshold used to be so low that a stubbed toe would hurt for hours. Now my therapists can wrench my body this way and that and the pain is just a thing, like my hair or teeth, another part of my body that’s not that much of a big deal after all. And that is a gift, even though I never would have thought to hope for it.

What I crave, that unguarded breath, that warm sun, is faith. Faith that I will be ok, that I will be strong enough to meet whatever comes next. And so far, I have to say, that has been true.  I have been strong enough.  I have bent but not broken, even if I am only just now realizing it as I write these words. Faith is right there, within my reach. Unlike hope, faith is judicious with its promises, only dealing in those it plans to keep. Faith is the one I need to call when answers elude me, because it reminds me that I don’t need them. All I need is strength, and faith has that in abundance.

About C. M. Condo

I am a late-diagnosed, high-functioning autistic living with chronic pain. I started this blog in March of 2014 as a way to try to process what was happening to me. It is my hope that by sharing it with you, we can both gain something, or at least learn something, from my experience.
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2 Responses to hope

  1. Pingback: what is real | this great ape

  2. You write so eloquently and beautifully and the hope and wishes if others upon us I personally find exhausting. But much like motherhood no one gave me an owners book how to deal with this so I muddle along the best I can x

    Liked by 1 person

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