People want to know what works. Be it pain relief, or the best route to get around, we all want the inside scoop! You may get the lowdown from a textbook, or a new smartphone app, but the REAL insider knowledge comes from the expert experience of those who live it on a daily basis.
Over the years I have been keen on documenting people’s knowledge and practices of living with pain, archiving their stories of resistance and hope. This resource has been circulating amongst my clients, and is constantly growing with the addition of new entries. I’ve learned a great deal from their stories, and hope that others can benefit from the same. For those who would like a copy, I have included a downloadable link HERE.
It was not long ago that someone asked me, “What worked for you?” I paused for a moment. “I don’t know if I’ve ever been asked that before,” I said. Some of my clients are aware of my recent brain injury, while most others wouldn’t have the faintest idea. Those that are in the know might expect me to draw some sort of answer from that experience. Apparently I did too, because to my own surprise, I found myself going much further back in time, to my early 20s, as I thought about my response.
It all began somewhat innocuously. It was a mild December evening and I was outside shoveling my grandmother’s driveway. Suddenly and without warning I felt something in my shoulder go, “SNAP!” And just like that, I lost much of the strength and functional movement in my left arm. Multiple visits to the doctor and consultations with specialists strangely revealed no answers. As time went on I tried every type of western and holistic treatment that came my way, but the results were always nil.
I won’t sugarcoat it. Years went by, and I spent much of that time feeling angry, frustrated, and sad, elusively searching for an answer to satisfactorily explain what I was going through. After all, there had to be a reason, right!? Eventually someone would find the key to unlock this entire mystery, and then we’d all say, “Oh it was so simple!” I began to lose faith in the medical community, along with my hope of ever recovering.
I didn’t know it at the time, but I was beginning to experience a type of GRIEF not often talked about, one uniquely connected to the experience of chronic pain, illness, and injury. I was grieving the loss of MYSELF. It’s tricky to come up with a suitable analogy to describe this phenomenon, because it’s different than loss in the traditional sense, which is generally more final. For example, the loss of someone dear can often be characterized by the absence of their presence and the void experienced in response to that. This is why the analogy of emptiness is commonly used.
With “self-grief,” the same tangible indicators become obscured. Since we are undoubtedly present, and in many cases APPEAR to be intact and unscathed, the loss becomes that much harder to perceive, thus making it undoubtedly more difficult to understand by those around us and by ourselves. "Self-grief" might be likened to the analogy of part of us being in a coma, while another part is a passive observer. It can feel like we’ve become onlookers to ourselves. Thereinafter, the quest for answers is really an attempt to find out, “Will that part of me EVER be revived?”
Well, I never did get those answers, or find that key. The truth is, not everyone does. What I experienced instead was simply an “ah-ha” moment, one that propelled a change of attitude SO significant that for the first time in years I began to perceive my life as spiralling upward instead of down! It took me YEARS to arrive at this point, but when I did, I realized something simple yet profound: I had become fixated on the presence of pain in my life.
In my quest for answers, I had become an aficionado at reciting each and every negative effect, everything I could no longer do, and the many ways in which my life was no longer the same. I had become so good at it, in fact, that there was little room for any other way of being! I’m not beating myself up over this now. Like many others, I believe I came by this naturally, especially given the amount of appointments I ended up having to attend. Sometimes in order to be taken seriously, I had to be prepared to go to some dark places. This was an emotionally exhausting exercise, garnering a weighty list of negativity that led me to feel MORE entrenched in the despair of my predicament.
One day it dawned on me -- in all these years of searching for answers, I had neglected to consider what I could do! This is perhaps partly because as a patient, where would that get me!? Turns out, this is where the MOST significant shift happened! I’ll pause here a second for emphasis. I eventually realized how much power and control I had unwittingly relinquished in the hopes of being “cured” …like a piece of meat? Is that what I’d become? It was time that I reclaimed it, to take matters more into my own hands -- either that, or get some deli mustard and rye bread.
Inactivity and an increased sense of lethargy had caused me to gain weight. I had become resigned to my predicament and miserably complacent about its hazardous effects upon my life. I had stopped going to the gym initially because certain activities exacerbated the pain, but eventually I stopped going altogether, because, “Hey, if I can’t work out the way I want anymore then why bother going at all?” This was my thinking, and it seemed to make sense at the time. In fact, it only served as a painful reminder that life had soured and things were not the same as before. The gym had been everything to me.
So today, when my clients reach that level of exasperation because they no longer see themselves as “normal” (i.e. the way they once were), I’ve been there and I get it. I didn’t get there overnight, but when I did, I found a new goal and purpose. “You mean I don’t have to keep gaining weight!?” While I may not have been able to weight train like I used to, it occurred to me that I could still utilize everything from the waist down, presenting options I didn’t even realize I had! You might be reading this to yourself and saying, “Duh!,” but I’m telling you, I never would have considered that before. Discovering it was SO novel and shocking to me, I felt like I had just invented time travel!
This was a MAJOR turning point. For the first time in years I experienced a sense of exultation, liberated by the belief that I could do something for myself. Sure, it might not look like it did before, but I was now okay with that. I was about to assert some degree of control over my situation which prompted a big step forward in regaining control of my life -- something I hadn’t felt able to do in years!
Recently, I’ve been asking people, “What have you been doing that’s good for yourself?” and, “…for others?” The most common response I get to the former is, “Nothing,” often followed by a look of shock and disbelief. This question has been generative, however, of meaningful conversations about what doing good for one’s self might look like: One young man got inspired to pick up the telephone and reconnect with old friends and colleagues. Another woman thought she might start by putting on some nicer clothes again though she seldom left the house.
What I’d like to draw the reader’s attention to in the above examples is that neither of them reinvented the wheel. They were, in fact, reconnecting with old ways of being, and bringing it back into the present anew. Finding one's way out of the clutches of self-grief, may, in part, be about RECOVERING parts of one's own identity, irrespective of physical condition or limitation. In a sense, it is helping to bridge the chasm of “who I was then” to “who I am now;” offering some reconciliation of the two so that people may once again simply embrace, “who I am.”
“So, what’s one thing you can start doing today?”
Ari Shapero MSW, RSW
In tune counselling
Ari Shapero MSW, RSW
Social Worker/Clinical Therapist
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