Wednesday, February 24, 2016

Four

Four years ago today, I had brain surgery for twin aneurysms intertwined around each other.

In these years since, I have born witness and fallen victim to the Four Horseman of My Personal Apocalypse.

The White Horse, the Horse of Conquest and Pestilence -
Four years of illness which has spread out to affect every part of my life, from body to bank to soul. Spreading like a plague into every hidden and exposed niche of a life. Battering all parts od me simultaneously and compounding on itself leading to a overwhelming weight of issues at once.

The Red Horse, the Horse of War -
Fours years of wretching internal and external conflict. Of devastating emotional revolution. Violent division in circumstance and future. War of the flesh, war of the mind, and war against each setback and every obstacle. War against myself and those around me. Wounds without end amid unrelenting, endless waves of onslaught. 

The Black Horse, the Horse of Famine -
Fours years of loss of health, loss of finances, loss of support systems, loss of control, and loss of hope. Losing the ability to love and accept love. Loss of being able to recognize love in the minutia of the greater whole. Losing sight of myself and losing dreams of what could be.

And the last Horse, The Pale Horse, the final Horse of Death -
Fours years of hope, love, visions of the future, health, and healing slowly dying. The horse of loss, loneliness, and despair. The horse which takes tomorrows and the dreams that reside in them. The horse hardest to bounce back from. The horse hardest to share and hardest to survive alone.

It is hard to celebrate survival when brutally being stomped on by such a relentless herd. 

It is hard to share the losses with others, when the burden has been so great for so long. It is hard to put into words the depth of ongoing struggle in this journey. It is hard for there to be true understanding and to find the support I need. It is hard to need and keep asking.

It is beyond difficult to stop crying and harder to realize the tears are so far from done.

Four years ago I hoped for but couldn't truly imagine reaching this day. Today, I can not believe I dreamed of this.

So much more I wanted to have done, so much more healed I wanted to be, so much more shared than I have gotten to share, and so much more whole than the pieces that are left of me. I wanted to be so much less alone instead of being more alone than ever. I wanted to give love and get love, not fight being so utterly hurt by and numb to it.

I believed in a someday that is today.

But, what happens when that day arrives and nothing you believed in, waited for, and held close is there?

Four years ago, against all odds, I survived. 
A year ago today, I started Survivor Jewelry to help myself and others surviving trauma, crisis, and illness. 
And today, I find the only thing I can cling to is that somehow I manage still to breathe. 

Maybe that in itself is brave enough. 
Maybe tomorrow, braver is only a few breaths away.



Tuesday, February 23, 2016

Help, Fire!

Police and crisis advisers often tell woman not to holler "Help!" when being attacked, since it doesn't always elicit the desired response. They coach instead to yell "Fire!", since that brings people running to help.


Survivors in crisis often reach the point where they have screamed both "Help!" and "Fire!" so many times that not only does no one respond, many times the screams aren't even acknowledged at all or recognized as screams any longer. So many times that the Survivor may not even have the strength, will, or voice left to scream anymore.

This occurs because trauma, pain, crisis, and healing often takes far longer than support can last. It can linger well after the emergency response teams have finished their jobs, packed up, and left the scene.

But even when whispered softly from darker corners, if we pay attention, we can see the signs of the enduring distress if we take the time to try. 

It may live in a downcast look or a hesitant touch. It could hide in a subject deflection or an avoided conversation. It might harbor in a slowness to laugh or an insincere smile. It could appear in a change of appearance or lack of participation. It might lash in a quick emotion or inappropriate response. It could cascade in a single tear or quiet sigh. it might just come with the realization that the person you once knew is not who you see when you look at them anymore.

Sometimes people have survived too much for too long that the ability to ask for help or seek understanding is no longer left in them, much less actually managing to find the breath enough to scream for it.

If you really love someone, if your desire to support is sincere, don't offer help or understanding, actually give it.

Really think on that statement for a moment.

It may seem very simple, but offers of help and understanding are easily given, however actually following through on them is infinitely harder on the offerer and much more important to the survivor then we could ever realize.

Saturday, February 20, 2016

Ten Things You Never Knew About Brain Surgery

1. 
Brain Surgery is not a luxury item. You don't window shop for it or decide to purchase it as an impulse buy. (And, even if you want to later, the purchase can not be returned.)

2. 
Brain Surgery is priced like a luxury item. The average cost is $157,000.00, but that is just for the surgery, surgery treatment, & initial hospital stay. 
It does not include pre-op or post-op treatments, or medications, or any kind of ongoing or complication costs, or the every 18-month followup angiograms, or any rehabilitation or therapy costs, nor does it include the living expenses for the average 3 - 13 month recovery time. 
If you include all that, the total costs can average well over a quarter million dollars.
That is almost $50,000 more than the price of this two bedroom luxury dreamhome in Bali with beach and mountain views. (But a lot less fun or relaxing.)

3. 
Just merely saying the words "I had brain surgery," makes friends, family and complete strangers flinch like you bitch-slapped them, and instantly view you differently, even though they never underwent any type of brain surgery themselves.

4. 
Craniotomies often involve something doctors lovingly refer to as a "Cookie" being cut in your skull (due to the cookie size and shape of the hole). But cutting into the flesh to make the skull hole will initially leave a trench deep enough to fully place two fingers in once "the cookie is replaced". Certainly something Cookie Monster never talked about on Sesame Street.

5. 
Brain surgeries often involve skin flaps, which is a medical way of saying if they need to get at your brain in the front, they will peel the skin of your face down to gain access, but Neurosurgeons frown when you call them Leatherface or Hannibal Lecter, and everyone else looks nauseous when you tell them they peeled off your face. Go figure.

6. 
After brain surgery, you can feel the screws and bolts under your skin with your fingertips for the rest of your life, which makes you interesting to pet at parties, like the Terminator in a toupee.

7. 
Brain surgery patients often hear a soft, continuous, audible clicking inside their heads during the first year of recovery. Although technically not an actual noise, the brain doesn't exactly know how to process the skull bone healing after suffering trauma so it processes it as a sound. The clicking stops when the bone completely heals, which is down right freaky after a year of annoying sound effects,

8. 
Despite the dramatic depictions in movies, after brain surgery doctors rarely bandage your head or wound. It must be allowed it to breathe to prevent dangerous infections. In fact, they request you severely limit any time in a hat or a hoodie, down to only a few minutes at a time. Which makes it rather hard for people to look at you when your head is gashed and stapled like a fairly melodramatic horror movie.

9. 
Brain surgery can seriously affect your ability to sleep, so sometimes during your recovery you have to trick your brain into resting by zoning out while awake. It is often recommended to watch something on television you are utterly uninterested in to allow your brain to drift away during it, so it has a similar affect as a REM sleep cycle, which is very strange when the credits roll hours later and you can't recall a single thing you just watched.

10. 
You get sent home with stronger pain medicine with almost any other surgery or injury. Brains don't feel pain, so most people go home with the same types of meds as someone who sustained a hairline fracture and got a couple of stitches. 
Let that sink in... I know, right?!?!

Certainly not the kind of Top Ten you want to have to participate in. And, only the beginning of things you will get to know if you have to have brain surgery. First and foremost though, brain surgery sucks, but so does the alternative.

Friday, February 19, 2016

The Sorry Excuse

Trauma, crisis, and illness, compounded by the pain, fear, and grief they bring, can lead to a lot of apologies. These apologies can come from all sides for a variety of both valid and less than surefooted reasons. 



Survivors, and the people who love and survive with them, apologize. 
Back and forth, we apologize:
for being a burden. 
for not being able to do more or be more. 
for the hurt we are causing
for the hurt we are witnessing. 
because we don't know what else to say.
because there are no right words to say. 
because we can't be fixed.
because we aren't able to fix someone else.
to avoid truths.
to end debate.
to console each other.
to ease guilt.
as a way to connect.
as a way to escape.
as a way to believe again.
as a way to remove doubt.

It is part of both the genuine and the polite interactions of humanity. It is integral to how we communicate with sincerity or regret. It is vital to our sanity and respect. It is part of how we heal and grow together.

Everyone makes mistakes and during heightened emotional times of crisis even little errors can feel like life-altering events when so much is exposed and at stake. Apologies help. They allow safety and comfort.

We also forgive. It comes with the territory. All sides forgive. We forgive A LOT. 

Some of the things we forgive are easy while some are exceedingly not. It is part of loving someone. It is part of surviving together. It's a beautiful and complex thing.

However, in crisis, often our choices are made for us and our hands are forced. Other times, we make our own choices and those choices have an genuine impact. Trauma is traumatic and when grappling with finding or providing hope, fighting through grief or guilt, and providing or seeking sanctuary from the fear, we can find ourselves promising more than we are actually willing to give. We can overreach in trying to lessen our own or another's pain. It can come from a deeply sincere place or a more shallow and casual one. It can be accidental or precisely planned. It can be meant to protect from or prevent more trauma.

We all make choices, but when life closes in too tightly and the dark makes hope fade, sometimes we apologize too much. When overwhelmed and desperate, we can sometimes forgive more as a desperate measure to stay connected then from a contented place of peace and understanding.

Over time, trauma can lessen the power of an apology and taint the ability to forgive. There can be too many apologies which can lead to too little forgiveness.

Hope is beyond fragile during crisis while fear is often truly overbearing in its debilitation. So, we have to be careful with our promises to each other. We have to be sure of our choices before voicing them or acting on them. We have to understand the depth of each other's situations before offering to act on each other's behalf. 

We need to respect hope and be aware of hope's boundaries. We need to recognize when it is being struggled with or genuinely fading. We need to offer only the support we are capable of giving and being honest about our own limitations, even as we continue to grapple with them. 

Trauma creates an environment for too many choices and too much sorry. Crisis is unforgiving in its very nature. But, it is no excuse for the opportunity of love or compassion missed. Our choices truly matter to each other and we need to be honest enough when we are making them so we do not add to the hurt. 

There is more than enough fear and hurt, that we truly need to be tender in our actions as to not inflict more pain in hearts already overwrought with far too much.