Saturday, February 28, 2015

Fifty Shades of Boring

When you are facing some sort of loss, illness, or traumatic treatment to stay alive, you will hear about fatigue and pain. And, as much as you prepare for it, both will still manage to slam into you like a train you never saw coming. Like jumping into a glacier lake in the Antarctic after punching a hole in the ice, you know it will be cold, but once you hit the water you realize you had no idea what cold was. 

The reason you can't prepare for it properly is because before the trauma what you have to compare it to is usually mediocre by comparison.

With pain, you might have cut your finger or broken a bone, and it really hurt, but the pain doesn't deepen and linger, expanding out to affect every other part of you for literally weeks and months on end. Pain that never truly stops, but wildly ebbs and flows dramatically, showing you levels of it you never could have comprehended before. Where literally the air touching your skin can be excruciating while the most basic act of breathing actually hurts. Where it is too painful to scream. (I actually had about five months where the act of crying was so painful the moment I began to tear up my body recoiled so violently I never actually got around to the crying part.) It is the same with emotional pain. It surges and overcomes you relentlessly.

With fatigue, you may have had a hard day at work, or run a marathon, and been tired, but that tired goes away with a good night's sleep and a hot cup of coffee. Traumatic tired would be almost comical if it didn't suck so bad. Seriously, you get dressed once, usually in pajamas, and everyone will see that outfit, because you literally do not have the strength to put on pajamas, remove pajamas, put on regular clothes, take off regular clothes, and get back into pajamas all in the same 24 hour period. You need a nap after getting a glass of water from the other room. (Invest in paper plates, because washing dishes is like an extreme sport. And do whatever you can to have help with laundry, because one load can literally take you days to complete.) Emotional fatigue is equally as debilitating and just plain wipes you out.

So, yes, you will hear about fatigue and pain, a lot. There is a ton of material written about them, doctors with tricks to guide you through them, support groups to help cope with them, and dealing with them will all be a part of your healing survival.

But what no one really talks about or prepares you for in any way is the Boredom. Everything about your fight at one time or another, in one way or another, will bore the hell out of you. It seems hard to believe. This event is life-changing for you, full of anxiety and fear. You are in a battle for your very life. That can not possibly be boring. Guess again. It is like an onion, every level of your treatment and survival will come with a layer of boredom.

Firstly, the obvious comes into play. Doctor's visits, waiting rooms, hospital stays, and long treatment processes. All boring. At some point, no matter how soothing the art they put on the walls is and friendly the nurses can be, you will get sick of looking at them hour after hour, week after week. When you are healing, you will get tired of the view outside your window, no matter how interesting your neighbors or the weather may be.

Secondly, entertainment to kill the time while you heal. You may love movies, or music, or books, or video games. You may like to knit, or quilt, or draw. But hours turning into weeks, then months, of these endeavors will start to make you want to bounce off the walls. (Sadly, the same can be true of people. You love them and need support, but after a while of no time to yourself and needing to suffer privately, you will desperately want them to go away for a bit.)

Thirdly, you will, even if for only briefly, come to loathe your New Superhero Title. We all get one. When you go through a major trauma or fight a disease, you earn this nickname, even if only in the way you feel treated and think people may see you. It becomes your whole life, because it is, so it becomes part of your description: Brain Surgery Girl. Cancer Chick. Chemo Patient. Brave Trooper. We become in one way or another the war we are waging and the tools we are using to fight. People will ask you about it, politely or in earnest. You will want to talk about it on occasion, probably many occasions, because it is so much of who you are in those moments. But, there are only so many ways and times you can answer "How are you feeling?" (especially if the answer is the same, "I hurt. It is hard. I am hanging in there,") before you start to feel like a broken record. You will get bored with the story of you even as you fight to give this part of your story a good ending.

Lastly is the boredom no one believes until they experience it themselves. You will actually be bored by the pain. 

It will go on so long. It will involve so much. It will ache and ache and ache, inside and out. You will shift around for comfortable positions. You will find tricks to ease or move the pain a little bit. You will distract yourself. You will have good days and bad days. You will get frustrated and angry. You will beg for relief. You will wage war within your body and mind trying to win. But, some level of hurt will remain for a very long time. And it will get boring. You will still feel the pain while part of you starts to go numb from enduring it so long. You will want to give up. It is a unique experience. Some people actually reach this point in their pain and do something hurtful to themselves just to feel a different kind of pain which they have control over. (Although not many admit it.) 

I have been known to obsessively chew my fingernails down to the quick at this point. Punch muscles I feel are betraying me. And, although it is not something I am proud of, I have, in the past, cut myself. There is an odd shame in pain as well. You feel like you should be stronger. You should be able to control it better. You even convince yourself you should be healing faster. And, overthinking the pain has its boring moments too.

How to fight the boredom is personal to each of us. The same way that you can not comprehend the boring enough to prepare for it, you will find a way to fight it through trial and error. Change things up whenever you can. 

Wear a strange hat or hello kitty socks to give others something else to talk about, or you something new to stare at, during treatments. Rest with a furry blanket or itchy sweater to have a different texture to run your hands over when you feel the need to grip something during pain. Watch a movie or television show you know you will hate, or read a ridiculous book, just so you can distract yourself with venting at the banality. Talk to someone about something utterly pointless and silly so you laugh for no reason. Even allow yourself to go a little insane for a surreal moment or two. Because, you are not actually going crazy. This is a real thing happening to you.

Do whatever it takes to get from one minute to the next intact. Fight just as hard to not add pain to what already hurts. And, forgive yourself for hurting. There is no shame in your pain. You didn't do anything to deserve it and you are doing the best you can with it. Most importantly, allow yourself to smile at yourself during the boring bits, because the truth of the matter is, if you feel bored, you are still alive, and that is the whole point anyway.

Know a trick? What helped you? Share it.

Friday, February 27, 2015


During crisis, you find yourself contemplating as both a way to face what is happening to you and a way to remove yourself from it. You get lost in thought and catch yourself standing still, staring at nothing. Mentally beating a dead horse from every angle. The thoughts can be overwhelming and have actual weight. Expression amid this type of turmoil is not merely difficult, but can be downright impossible. It becomes a battle in itself to find a calm place, to share or give coherency to this massive internal conflict, which on the outside appears so still.

It can be extremely isolating and lonely. You can feel like you are slowly going insane.

I reached for any outlet I could to escape the fear, wrestle emotions, deflect pain, and understand the scope of the situation. Books, movies, cooking, art, running errands and even cleaning, became a way to keep moving during the contemplation so I did not get trapped in one place or mindset.

But, for me, during the darkest times, music created a shelter in the storm. I used music to alter my mood, clarify my focus, share my thoughts, and give words to things I could not adequately express. It also became a source for allowing others access to the hidden parts of the struggle, without having to vocalize the trauma myself. Music talked for me when I couldn't.

I would "contemplate" to a vast array of different types of music. Whatever sound best served my emotional need of the moment. Silly songs which could make me feel giddy and leave me smiling. Soft ballads which swept me into a more tender place. Loud, angry music whose rage could keep me from putting my fist through a wall and still let me vent. Classical instrumentals that gave structure to the chaos. Sad songs which allowed me to feel less overcome by my own tears. Music that pleaded, questioned, answered, and contemplated for me.

I actually learned how to do this to the extreme, because a very close friend does this all the time, to the degree that basically his whole life has some sort of soundtrack. I found comfort in how he would explain complex feelings in the simple act of sharing the song which said what he struggled to say. So, I stole this philosophy and incorporated it into my crisis and healing. Music allowed me to contemplate without being swallowed by paralysis and allowed me to share when I felt the most closed off. 

I found some of my deepest, most important conversations during my darkest hours were quiet serenades of "Have you heard this one?" and "This reminded me of you." Hours and hours sharing songs that could talk for us. Music that spoke volumes. It enhanced my world and lowered my walls. These song conversations allowed me to breathe again.

One song in particular opened for me a place of grief, fear, hope and healing that I never saw coming.

Trauma is unique for everyone that goes through it, because the same event that happens to you is lived with an alternate perspective by the people sharing it with you. This can be easy to overlook when you are in an understandably selfish place of fighting to survive. After my surgery, when I was the most deeply entrenched in the reality of my survival and the pain of healing, my friend was trying to find a way to share with me about what my 16 hour surgery had been like for him. The fear of losing me. The waiting and worry. The hope and despair. He was struggling to convey how powerful and life-changing an experience it was from his view. And, for a moment or two, I thought I totally understood it, then he played for me the song he had listened to over and over again while he was waiting all those hours praying I would wake up.

This Woman's Work, by Kate Bush.

A song I had probably heard a handful of times, but wasn't really the kind of song I would have previously been affected by. But, in the moment he shared it, I lost the ability to breathe. 

I saw completely for the first time the scope of what my survival and struggle were. How one person's trials are shared so completely by those who love them. How important the fight to live is. How scared and hopeful we can all be. How simple yet meaningful it is to be utterly human. I saw that it was alright to break down, reach out, and hold on. I knew it was okay to be hurt and keep breathing. At that place and time, in that single moment, I knew how important it is to love and be loved. It makes all the difference.

Even years later, just hearing the first notes of that song, instantly takes me back to that moment. Full of the most exquisite pain and hope, soft grace and tears. It reminds me of who I am and what I have survived and who shared it with me. It sings to me to remember to take the time to let love in. Its simple serenade soars with the reminder to never forget. We don't go through life alone. We survive together. We should never forget and always be thankful.

Whatever your crisis or trauma, no matter how overwhelming the contemplating can be, find something that speaks both to you and for you. And, share it with someone you love.

Thursday, February 26, 2015

Facing the Flinch

It starts as a conversation accidentally evolves, a casual question is asked, or eyes stare too obviously, while trying not to look, at a scar. To which you state honest and simply, "I had brain surgery." (or survived/are surviving some other treatment, aliment, or trauma) It is always followed by the reaction. The flinch. Always. The only difference is which flinch. 

Sometimes it is the empathetic flinch, a slight flinch which recovers in a stumble but is fraught with sympathy. "Oh, I am so sorry... That is awful..." 

Other times, it is the curiosity cat flinch, wide-eyed which lurches forward. "Oh, god. What happened?". 

Then, of course, there is the awkward flinch, a bit off but polite. "I didn't realize.... I had no idea." 

But, sometimes it is the dreaded recoil flinch. A whole body flinch, with a shifting of weight and eyes that no longer know where to look. They usually only say "Oh" and suddenly jump to a different subject entirely, wanting to talk about anything else and be anywhere besides facing you. They want to flee. Sometimes they actually do, and leave you standing there.

The flinches are often difficult, even when you know they are coming. What we have survived and the scars of it are very much a part of us, both on our flesh and in who we are now. I must say, I have learned to take an inner beat. Sometimes, I admit, I roll my eyes in my imagination as part of the pause before addressing the reaction. And then, I tend to shrug it off. "Brain surgery happens." or "It was a while ago." Sometimes I have even been known to reassure them I am alright now. (Sometimes even when I had a headache and didn't feel alright at that precise moment.) 

I am guilty of wanting to make it easier on them, and make it less about who I am then it actually is. Which, when you think about it, is silly. I had brain surgery. I survived that. I went through it and deal with the repercussions of it. Why should I lessen that, apologize for it, or soothe a flinch?

Why? Because we want people to like us. We want people to see beauty in us and not ugliness. We don't want to scare people or put them off us. We don't what to be the freak or the patient. And realizing that, I have started to Face the Flinch. It is human nature, those flinches. I embrace that. People are allowed their reactions, just as surely as we are allowed how we face them.

I allow people their reaction moments to deal with as they need to, now. (This includes allowing them stupid inappropriate blurts like "That's the last time I ask you a question, Jesus.") Then I share my story, often in an edited form for polite conversation, but I bring it into the light none the less. I do not ignore that part of me. I am simply honest. 

I do not intend to burden people with my story, but it is not a secret. It is part of what shaped who I am now. If people can not handle it, or wish to avoid that part of me, they will never know who I am or see my true worth. And, life is too short to waste myself in the silence of deferring or denying. We survive and that isn't something to be ashamed of. 

(Recently, when the subject came up, I went as far as offering to let a roomful of people feel my scar. It is a doozy and the bolts along a trench beneath the skin feel surreal to the touch. People's reactions were amusing, boundaries came down, taboo and shame didn't have a place there. One friend stroked the bolts and ran his fingers through my hair in the most tender and soothing of ways that felt like a quiet acceptance I hadn't known before. We all experienced this together, solely because I chose not to hide it and shared my scar.)

However, there are other, more precarious sides to the flinch as well. These sides are harder to deal with and much harder to navigate for they usually involve someone much closer to you. People who matter and are long past the initial flinch phase. These sides tend to fall firmly in the "Right now, I need to talk about it, but you can't handle it" category. 

Sometimes when you survive something, you need it to be okay to talk about it casually, or with humor, or without weight, or with weight to vent out the burden. But sometimes when you need this, other people need you to shut up. There are key signs this is happening, often subtle: eye contact starts to drift, shifting in seats occurs, hand patting commences. Sometimes it is more obvious, eyes well with tears and there can even be a soft statement of "No more, it hurts me to hear."

This is the see-saw flinch and balancing it is tricky. You want and need to respect other people's pain and difficulty with what happened or is happening to you. You want and need to not lessen in any way their struggle with your struggle. They need support as do you. You don't want your story to be something that overwhelms others, but you also need to be able to share. It is how we all breathe brave and survive. 

There is a huge learning curve here and we all make mistakes along the way. I have started to softly own my survival when this occurs. I state simply, "It was my brain surgery, you loved me through it, but it was mine. Sometimes I need to talk about it and that needs to be okay." 

You can not push and respect must reign. But, honesty here matters. This goes both ways though, because sometimes they will need to recollect that time and struggle at a moment when you just want to forget for a while. Hence the balancing act.

Try to find a middle ground. Remind them of a private moment you shared that mattered to you both or remember a funny time which lifted you both out of the mud for a bit. A moment of light in the dark is well worth revisiting. Sometimes sharing the memories can be close and tender, allowing the conversation to continue and evolve in a way which respects both your needs, and may surprise you. In those moments, not only can we breathe bravest, but sometimes find we can breathe easier having shared them with someone else.

Have your own flair to facing the flinch? Share your skill. Let us know about it.

Wednesday, February 25, 2015

The Morning After

When a traumatic event or illness occurs in your life, it doesn't happen just to you, but to the people who know and care about you as well. However, over the course of your survival, you will be faced with two distinct and definitive events involving others.

The first of these is the sometimes shocking revelation of who will stick by you and how. 

Often is it not who you expect and almost assuredly never how you expect. People have a surprising range of reactions. Some, who you were sure would stand strong with you, will just disappear entirely after the initial polite concern. Others, who you might have expected to hide or run, step up and unshakably sit vigil by your side. Still others, who can not handle what is happening to you, hover around the fringe, offering support, checking in, but keep their distance until they can be sure how it is all going to play out. 

In the middle of what is happening to you, this can be both uplifting and very painful. You will be torn between gratitude, clinginess, anger, confusion, guilt, and shame. (Often all at the same time.) There will be people who disappear and you never connect with again, as well as surprising sources of support which will forever bond you to others. In the midst of your struggle you have to try not to overthink this part of it. Embrace those who choose to share it with you, let go of those who don't, and forgive those who support from a distance out of their own fear of facing you during it.

The second event is much more painful and shocking when it occurs. 

The people who choose to move through it with you often will reach a point where they move on, either because they do not fully comprehend there are parts of you that will never completely move through it or because they can not handle the weight of it anymore. 

In the cases of comprehension, it is understandable that some people will assume that once the trauma is over and the wounds show scar tissue, it is all behind you and things can return to normal. it isn't easy for people not living it to realize that your normal may never again be the normal you once were. You must try to find a balance that allows you to be who you now are and allows them to slip back into their own life's routine.

In the cases of escaping the weight, it is an amazing thing to share the darkest of times with someone and doing so can create a level of intimacy which had previously been unimaginable. But it is also a very hard thing to endure for the duration. Often when you reach the point in your survival where you think you might be beginning to see the light again, the other person needs to move on to something that has only known light with no history of the dark you have just shared. It can be extremely harsh to realize that you went through the dark together only to have them move forward to share the light with someone else. Friendships, relationships and, often times, families can be destroyed by this. And, more likely then not, the survivor is racked by guilt and profoundly mourns the loss, at a time when they are the most vulnerable.

Surviving has the appearance of strength, but can be misleading in how strong you are at any given moment, because the struggle does wear you down and continues on longer then anyone could imagine. So, you will find yourself more easily wounded, especially if you have trusted and relied on another who suddenly grows distant. 

These are hard truths to come to terms with. They can make you spiral out of control and overthink even the softest kind words. They can leave you feeling worthless and lost at a time when you are fighting to find your footing again. You will know anger and hurt, you will level blame on yourself and others. It happens to the best of us.

But, you can not cling to the past with someone, even if that shared past was a safe place in a worsening storm. Even if your darkest place glowed with the softest light because of someone close. You can not demand someone who needs to escape it remain there with you just because of what you survived together. You have to be thankful for the comfort and company once shared. Hopeful for the future no matter what it may be. And, forgiving of the present, because it is what it is.

People survive shared trauma the best they can. But, their best may not be what you need, when you need it, for as long as you need it. The best any of us can do is try to prevent our traumas from causing more damage to the people brave enough to have shared them with us. Forgive what you can not forget.

Tuesday, February 24, 2015

Unremovable Jewelry

A few months ago, I had medical images taken of my head and neck. After taking the first series, the xray tech said, "please remove your jewelry." Almost immediately, she realized the error in that statement for what she was referring to was internal- my inner hardware, the nuts and bolts of a 16 hour, dual craniotomy/orbitotomy for the cerebral clipping of intertwined twin brain aneurysms. It was a casual statement, quickly shrugged off by a tired technician, but I turned and saw the image on her screen. It lingered with me. 

That xray showed my jewelry of the unremoveable kind. 

I thought about all I went through to get that "jewelry", all I continue to endure because of it. 
I saw its weight, heavy with anxiety, stress and fear. The ugly pain of it. I felt the depth of worry and desperation those around me were shrouded in. Friends and family who share the same feelings in different ways born of loving and caring about me. I knew my guilt and shame intimately, the anger, and how lonely it could be. I recognized clearly how I protected myself and others from the secrets I keep buried in the darkness just to get through each day. I found myself tracing my tangible scars with my fingertips, as I caressed the truth of hidden scars beneath.

The more I thought on it, the more I realized I do have jewelry. It is jewelry which will forever adorn me. Jewelry which I fought for, paid the highest of prices for, and which I truly own. Yes, I have scars, so do those who love me. So does everyone. We all have our own kind of survivor jewelry.

Like the almost ethereal glow of the contrast in an xray, I began to see the soft light of it around the shadows.

Yes, I hurt. But, I am loved. When I reached, someone held my hand. When I screamed inside and out, I was comforted. I am lucky, shocked and moved by the actions others took, sometimes drastic ones, to stay with me and hold my struggle tenderly. I live in the darkest of places, but there are often beautiful candles to help light my way when I need them most. I battle to survive, but love stands vigil over the fray. It may sound overtly dramatic spoken outloud, but the soft truths once stripped of flowery speech are still valid. I fought and continue to fight, but not alone. Others stand with me.

Throughout all of it, people tell me how beautifully brave I am. I don't feel brave, in fact it is the opposite. I feel small and weak, worthless and overwhelmed. I see other people's beauty and bravery. Myself, I come undone, constantly struggling to keep going, often wanting to give up. It has been too much for too long and some days just breathing is hard. But, I started to see something in that recently. 

What if that is what bravery actually is? No grand gesture but the simplest of actions. Something innate like finding your breath one inhale at a time.

I had surgery three years ago. (Today is the anniversary of that life changing event.) I still struggle. I know pain. Those things do not have to live in the shadows of who I am. It is part of me, but so are many other things. I survive. So does everyone. We all endure. 

Take a moment to look into your own shadows and shine a yellow light there, whatever your situation. There is beauty in dark places if you look with open eyes. It doesn't have to be brain surgery. It can be anything: cancer, AIDS, abuse, addiction, depression, cutting, poverty... anything, including loving someone facing such obstacles. We all know trauma on some level. No one's trauma is bigger then your own or that of someone you love. Each of those levels is personal and powerful, to us. We all survive. Even those who fight the good fight, but are taken from us, survive in the memory of those who witnessed or shared the struggle with them. Love breathes brave.

I started Survivor Jewelry because of all this. A tiny spark to fight the dark. I do not know true enlightenment, but I have a story. I have scars. I am loved. These are merely my words, but we all have a voice. One voice is a whisper. Two voices is the start of a symphony. Many voices can be a movement. Speak up. We need to own our jewelry, not let it own us. Some days this is beyond hard, but we are all survivors. 

Share your story. Show your scars. Tell someone they are loved, even if that someone is you. Breathe Brave.

Three years ago today, I survived my jewelry. I continue to survive with it today. I hope to survive it tomorrow. Join me in celebrating the start of Survivor Jewelry. We all endure together. Inhale. - K. Drake Streetman

The Charm

Three years ago today, I survived. I continue to survive, today.