Walk Two Moons

To say that I’ve got a full rucksack right now would be an understatement of the most epic proportions. Just looking at the medical concerns that plague my day to day life is more than enough to exhaust and baffle even the most interested outside party. Despite the fact that I’m a storyteller by nature and have embraced the sharing of my story in the hopes that some may be inspired or changed, or that someone may be spared from the medical kerfuffle that is a part of my particular toxic cocktail, I do my best not to wear my struggles as feathers in my cap, showing them off to prove how much I am a victim of disease or circumstance. And while I have embraced the honest story, that doesn’t mean that I have by any means shared it all or that I will. There are, in fact, very few who know the whole story and who know the particularly ugly and tragic bits of the comedy of errors that is my life. While I choose to share the stories, there are some that I keep just for myself, some I will share within my circle, and some that I will share just with my medical providers or my closest confidants.

Nevertheless, I find that there are those who seem to think they are all-knowing when it comes to me and my situation.

As doctors, they’re the ones that are unable to conceptualize a medical case that isn’t “textbook” and are frequently those with bruised egos from having their base of knowledge amount to squat when it comes to me.

As acquaintances, strangers, friends, or family, they’re the one’s who try to encourage, help, and support but somehow only manage to irritate me to the point that my claws come out.

The sympathetic soul sees my struggle and feels solicitude, sorrow, or pity for me because of all the hardships that I have endured. They sometimes try to remove the stingers they think they see by being helpful, involved, and full of advice and ideas but they don’t realize how offensive it is to have someone trying to fix what they think is broken in me and in my world when they are most certainly blissfully unaware of the multitude of layers they don’t see below the surface. These are the souls that are perfectly suited to making the “poor you pity face” at those who are in a struggle and while they think their face says compassion what their face more frequently says is condescension.

The empathetic soul does their best to put themselves in my position in order to understand what I’m feeling and going through. These are souls that are much more adept at removing stingers they see because they’re able to relate themselves to me in some way or other. While I could name a few exceptional empaths who truly fill my soul by finding parallels while still acknowledging they are only trying to relate and are unable to completely understand, there are far more empaths who truly believe that they do understand what I am going through despite the fact that they too are most certainly blissfully aware of only the iceberg floating above the surface while the rest of the massive beast is hidden below in the depths.

Empathy and sympathy are beautiful gifts, to be sure, but most often they are gifts that are completely wasted on me because as soon as I sense pity or the assumption that someone “knows” what I’m going through, my hackles rise.

I don’t care who you are or what your intention may be, unless you’ve walked two moons in my moccasins you don’t have a clue what I’m going through, living with, and overcoming every day.

I understand that people are trying to say something comforting, but I am not comforted by it and I don’t know one patient like me who is. When people who haven’t had these experiences say, “I understand what you’re going through,” it is a lie, perhaps well-intentioned, but a lie nonetheless. Please allow me to apply some perspective to this situation:

Doctors can give my friends who have fought cancer or are fighting cancer an estimate on their life expectancy.

A patient with renal failure can be told about how long they have before their liver gives out completely.

When a bone is broken or someone has a wound, we have some reasonable expectations for how long it will be to have healing.

Meanwhile, despite anticoagulation therapy for my blood disease, I could still clot and die tomorrow because I felt stressed or really upset today…

Or because the sun set behind a cloud while Mercury was in retrograde and a butterfly fluttered alongside a dove in the last light of Durin’s Day (as is apt to happen when unexpected journeys, like mine, arise).

The well-intentioned are lucky not knowing what it is like to be inside a body whose autonomic functions dysfunction constantly and whose immune system forgot that it’s not supposed to attack its own body. They’re truly blessed to not have to find creative ways to cope with the chronically ill body that I live inside. The don’t realize that their worst day is my best day. They don’t understand any of it. They are immensely lucky and yet tragically unaware of it and so they say pretentious things that make me want to wield all my wit, intelligence, and sarcasm to tell them so.

A far better gift for me and I would argue for anyone who is a chronic illness warrior, for what else could you call a person in a fight for their life against the illnesses ravaging their body, is that of compassion because compassion is empathy with actionable choices that relieve suffering.

Empathy can exist without action, as can sympathy. You’ve all seen videos and pictures of abused animals online or on TV but I bet every one of you has hit mute or changed the channel when Sarah McLachlan starts singing “In the arms of the angel” despite the fact that I don’t think any of you actually enjoy or relish the realities of animal abuse. Don’t even get me started on the horrifying atrocities of female genital mutilation, child marriage, human trafficking, and any form of abuse (as if that’s all that irks me in this world). Honestly, it baffles me that people can be more upset about some crass remark made or opinion shared by someone famous person while not crying out in anguish at the horrors of those who live in oppression around the world… but that’s just me. We can all watch news reports about heinous crimes against humanity from the comfort of our 1st world couches with AC, clean water, roofs over our heads, and more food than we actually need, crying over images of a woman being stoned to death or beheaded because she dared to get an education or because her life was the price paid for the crime of one of her family members only to forget those same images in the next moment because even when we feel sympathetic toward their suffering and even when we try to conjure up the empathy that understands, we can still chose not to act on those feelings.

*deep breath*

About 6 months ago I (perhaps smugly) informed a friend that the motto for his particular organization was grossly mistranslated from Latin, not that anyone but another Latin geek would care, but I had to concede that his mistranslation was still a beautiful one because it opens the door to action rather than simply stating a value.  Empathy and sympathy are valuable, but they require no action while compassion cannot exist without it.

Compassion is the choice of those who see suffering to act, those who choose step in to fill a need.

Compassion doesn’t just fill a need within the Other, it fills a need within the Self when the heart rate slows, oxytocin is released, and the parts of the brain connected to empathy, caregiving, pleasure, and intimacy light up like a Christmas tree. It doesn’t have to include altruistic martyrdom, although at times it may. All that is required for a person to act in compassion is to listen. That’s it… Listen. Certainly a kind touch, encouragement, speaking with sincerity, showing kindness and respect, valuing the Other’s privacy, being an advocate for Others, and tasting words before allowing them to be spoken are all valuable actions for the compassionate, but simply listening is the only requirement. Acting with compassion in just listening to Another addresses two of the bottom three tiers on Maslow’s Heirarchy of Needs instantaneously with making the Other feel safe and fulfilling the Other’s need to belong and to be accepted. Crisis hotlines for those who are considering self harm work because the people on the other end are compassionate souls who will just listen and who will respond without judgment, arrogance, or condescension.

It is a profound truth that just by being a listening ear one can have such a positive impact on the suffering of Another that they can save their life if not their soul.

Every person who speaks to me with just sympathy or just empathy without compassion is always a hair’s breadth away from a throat punch or verbal thrashing. It isn’t that I don’t understand that their intent is good and wholesome. It isn’t that I don’t have any patience whatsoever either. It is that there exists within me a Spirit that no longer wants to tolerate ignorance, arrogance, condescension, and the self-centeredness that I see around me and that is directed toward me. The words are ever bubbling below the surface waiting for a fissure to open up so that I can spew forth the fires within because, quite honestly, I never know if today will be my last.

Those who approach me with compassion are those with whom the honesty and unfaltering vulnerability may flow because they are those who have never deigned a listening ear out of anything other than basic common decency or the kind of love for a fellow human being that is not subject to any conditions. It is the compassionate soul that is able to remove the stingers from the broken in body, spirit, or mind without causing more harm. It is the compassionate soul that never believes they are all-knowing as they preach their understanding to the weary.

It is the compassionate soul that despite not having walked two moons in my moccasins is able to remove the stingers, the thorns, the tangles, and the brambles because the compassionate soul only needs to say one thing:

I am here.

The compassionate souls here listen to my stories, walk this journey with me, and remind me that they are here. The compassionate souls here tell me I am seen, I am heard, I am esteemed, I am valued, and my stories, and therefore my struggles, make a difference.