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Running, running

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Running, running to catch a star
She needs to go, go so far
away
from there and here
she is
Blindly leaping, crazed, and dazed
Idiots they are amazed
by her
They are running, running to catch a lie
stick a needle in your eye
promises broken, again she cries
screaming silently, can’t you hear
from there and here
she is
Running, running to catch a thief
A stolen life, eternal grief
lost
before being found
Her shooting star, was shot down
nearly lifeless to the ground
Running, running, to catch release
She needs to find that life can cease
to chase her
from there and here
She is
Blindly leaping, abused and bruised
lost and confused
seeking
only
peace

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The cost of healing part 1

Healing costs more than money, and I have been paying the price for years. But somehow this year seems to be costing me the most.

Let’s talk about money first, because it is easier.

I had a full ride scholarship for biomedical engineering to an elite college, $50,000 a year. I worked so hard to get myself there and had big dreams. That was the time PTSD first hit me, when I left home. The migraines became daily, I became suicidal, unable to sleep or think, nightmares, social anxiety, startling easily. My confidence vanished. Every skill I used to get myself there – poof – gone. By the end of the first year I was forced to withdraw, lost my scholarship, lost my dreams, my hopes, forced to change to a less expensive school and a major I did not want. I was forced to take out student loans for the entire amount, well I thought I was forced, I did not clearly understand what I signing with Sallie Mae at the time. They said sign here and you can go to school, so I did.

I did not care much any more, I felt empty, but I kept going.

The migraines and depression were a constant battle but I graduated with honors, easily got hired. But the stress was building. My new marriage was sad and distant and lonely. I had no friends. I was not challenged in my job, only by the social anxiety and panic attacks. I became suicidal again and was forced to resign.

At that point we had bought a house based on my income. Losing it suddenly was devastating. We could no longer afford two cars, cable, eating out. We also lost my insurance. The psych visits and meds were staggering. We kept adding to our credit cards for groceries, meds, doctors, even getting advances for the mortgage. Until we couldn’t.

Hubby convinced me to cash out my 401K that I had been paying into since I was 16. All my hard work, all that planning working in government jobs and we had to flush it away at age 25. I still regret that, especially since the following year we declared bankruptcy anyway.

That’s when we decided to start a family. No job, me sick, no money. Such idiots. It is amazing we are all still here really. But I had my reasons.

I healed enough to work part time and hubby got a new job, where he is now finally making a decent average income. When we both worked it was okay. On only his income we struggle and cannot pay every bill each month, we have to pick which ones to delay, slow pay, or skip a month.

I tried working full time. I am not sure if that was my mistake, or that I worked with a horrible CEO, or that it was bad timing too with AF’s death. For a year or so we had more money than we needed. It was amazing. We paid off every credit card and started making repairs around the house with new windows and such. But I crashed. The migraines returned, but with an evil twist, hemiplegic this time. I became suicidal again due to the anti seizure meds given to me to control the migraines. I was hospitalized, in a psych ward for two weeks. I was given ECT treatments and more meds than I can recall. It was horrible. I still haven’t written much about it here, might be ready to do that soon.

My hospital and medical bills are staggering, even with insurance I owe about $500 a month to various locations. My pharmacy bill is about $200 a month.

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Today is pay day. Before his pay came in, we had $48 left. Nothing in savings. A credit card maxxed out. No wiggle room. The stress of this hurts my stomach. And it all feels like my fault.

I need to work. I want to work. But I can’t yet. I am not well. Most of the time I sit and stare at the wall, or I turn on the tv and stare at that so it feels better to stare at something that makes sense to be staring at, but I don’t absorb what is happening. I have tried taking tests for jobs and I can’t pass them. I get confused, I can’t remember, I make mistakes. I am not well.

Money may not buy happiness but it does provide security and options and lower stress levels. I hate that creditors call me a dozen times a day. I would love to pay them. I am an honorable person. But I cannot pay them all, I have to choose. So I choose water, electricity, food, meds, school fees, lunch money…please be patient I will gladly pay you Tuesday for a hamburger today.

Part of the reason for this post is venting as usual, but part of this is to raise awareness. People don’t know how hard we work and what daily life is like. I hate money. I hate that we need money and that we need things. But we do.

We have never gone on a real vacation. We have saved up and gone to amusement parks for a day. We do not have nice new clothes, we shop at goodwill and walmart for the kids and most of my clothes are at least 10 years old, some even older. We all have 1 pair of shoes for each season. I have 1 purse. We eats lots of plain rice and potatoes and noodles. We do not go out to restaurants or movies or skating or skiing or golfing or whatever else might be fun because it costs money. We do free things at the library, parks, museums.

We do not qualify for welfare or free lunches for kids or food stamps or food cupboards. Our income is too high. But they do not look at our bills, that there is nothing left.

So kiddo says his knee hurts, he can barely walk. I take him in for an xray, they say not broken, likely a sprain, keep it iced and wrapped and gave him a note for no gym or recess. Dr calls me back and says they reviewed the xray report and kiddo needs an ortho specialist, there is some sort of bony growth abnormality.

I thanked her, made the call, and hung up and cried. I freaked out. Then I cried some more.

I don’t want to think about what might be wrong with his knee, does he need surgery? my poor baby is only 8. I have to be strong for him and I am so not feeling strong. Trying not to pre-worry but that isn’t going well today.

And then the money. I have not yet paid for that xray and I had to make more appointments that I know I can’t pay for. What choice do I have? He needs this. I’ll pay them eventually, or I won’t and the debt collector will call me for this too. I will do my best.

This life is effing expensive, and really effing hard.

Progress or cycles

I slipped away for a bit, dipped my toe into the darkness. I didn’t even know I left until I started to return.

Dropped the kids off at Grandma’s house on Friday night. I became aware on Tuesday that I was still in the same clothes as Friday. No shower? Guess not. Check my hair, it was a knotted matted mess. Check the time…2pm and I am not out of bed, had not eaten. Did I eat yesterday? I see an empty bag of chips. Oh. And a mound of candy wrappers. Oh no.

Depression got me. 3 days in bed with half watching tv and half sleeping.

When I dropped off the kids, I also dropped off my reasons to get out of bed apparently. I knew I was only living for them right now, but this is scary proof of how true that is. I am not living for me.

I am starting to think this ‘progress’ stage of my therapy is not really progress at all, but an upward swing of my cycle. Meaning I have been here before. Do I really know more this time to prevent a future suicide attempt? Has anything really changed?

How can I measure PTSD recovery progress in a real, meaningful way with metrics and goals?

What do I want?

I want to feel safe. Alone. In a crowd. In bed. In a relationship.

I want to sleep. At night. Every night. Without nightmares.

I want to trust. Others. Myself.

I want intimacy. Closeness. Connection. Friendships. A social network.

I want to require less control. Live and breathe. Be free.

I want to enjoy affection. Human touch. Be comforted by hand holding and hugs.

I am not any closer to any of those wants. Which leads me to the next one.

I want to stop wanting to give up.

Botox for Depression and PTSD?? Maybe

I’ve had Botox, and I never thought I would. But not for cosmetic reasons. And I think I may be experiencing more than the intended benefits to my treatment.

I’ve always had migraines, but I’ve lost a year of my life to nearly daily symptoms of uncontrolled, unmanageable hemiplegic migraines. I tried changing my diet, managing stress, losing weight, adding anti seizure meds, calcium channel blockers, magnesium infusions…and I was still suffering. My neurologist suggested Botox and I kept putting it off, wanting to try everything else first. I was skeptical that it would be effective, how could paralyzing the muscles outside your head affect the inside of your head? It didn’t make sense to me. Plus I was not keen on having 50 needles poked into my head, silly me.

But I did the research, and I agreed to give it a try. I was at the point that I had nothing to lose. My quality of life could not get worse. I either spent every second in fear of a migraine, about to get a migraine, in the middle of a migraine, or recovering from one. An attack would last days to weeks, with the muscle weakness not recovering in between.

I had Botox for migraines in the end of March. That same day of my treatment, my mother passed away. Two weeks later I had spinal surgery. Needless to say, but I’m saying it anyway to be exceedingly clear, this a HIGHLY stressful time period. I should be suffering a worsening of depression, PTSD, migraines, etc right now.

But I’m not. I feel good.

Huh? What’s up with that?

I tried giving myself and my new counselors credit, which I did a little, but it didn’t add up. Something had drastically shifted in my brain. I feel lighter. I realized I haven’t been fighting away suicidal thoughts and images all day long. I’ve felt loved, and connected to my family. Instead of the horrifying void, the usual ache of emptiness, I feel the warmth when my kids hug me. This is new, spectacularly new, and amazing.

So I started thinking. Of course I started thinking, it is what I do best. Start up the old analytical engine. What happened? Why now? What lifted my depression? What did I do differently? I racked my brain until I had what I thought at the time was a silly thought. Hmmm, I never had Botox before… that was new.

Now you may be wondering if the Botox worked for my migraines, and I am pleased to report that I have not had a migraine since right after waking up from surgery, 5 weeks ago! This is the longest stretch of migraine free time I have had in years, and no hemiplegia. So is that enough to account for the shift in mood? Perhaps…but I don’t think so, because I used to only have a few migraines a year and still battled some level of depression and suicidal ideation most of the time prior to the hemiplegia.

So I did some research, and it turns out that Botox is actually being explored as a treatment for Depression. I was stunned. I’ll share some of the links to the research here in a bit, but the main idea for why it may work is fairly simple. Botox in your forehead prevents you from making several negative expressions, especially frowning and furrowing the brow from sadness, concern, anxiety, and fear. Preventing the face from expressing the emotion breaks the feedback loop those muscles send to the brain – the exact science behind preventing migraines actually. Put simply –  It gives the brain a rest and gets you unstuck, out of the rut.

So your brain gets less “I’m sad” feedback from your face. That’s a good thing. But take this a step further. You manage to go out grocery shopping, guess what, the people there get less “I’m sad” feedback from you too. They smile at you warmly because you no longer seem unapproachable. Suddenly your world is full of more positive social interactions instead of everyone asking you what is wrong.

I used to think the smile I plastered on my face was a good mask, a good disguise for my pain. But I can tell you now, after seeing the grimace actually gone, it wasn’t a good disguise at all. I only thought I was hiding it. It was still there in my eyes. This kinda wrecks a lot of what I thought I knew, but, that’s okay, because I didn’t like the world I knew.

Here are some of the guys studying the effects of Botox for Depression, Dr. Finzi and Dr Rosenthal. Here’s an excerpt from the results of their double blind clinical research:

Comparing the scores at the six week visit versus baseline, there was a significant improvement in the OBA group compared to the placebo group; there was a 47.0% reduction in MADRS scores for OBA, versus a 20.6% reduction for placebo subjects…

The MADRS is an interview given by clinicians to assess depression. I’ve included screenshots of it here (taken from http://narr.bmap.ucla.edu/docs/MADRSstructuredInterview.pdf) in case you are curious of the questions it asks. It is short, but because it involves a face to face discussion with the patient, it can provide an accurate snapshot of mood and functioning. They usually give me the Beck Inventory to fill out myself at my counselor’s office, which is similar, but I think could be less accurate.

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The conclusion of Finzi and Rosenthals study stated “There are several possible mechanisms by which OBA(Botox) may help alleviate depression. First, frowning may affect the way people feel about themselves when they look in the mirror and the way others respond to them. OBA, by reducing the level of frowning may cause others to respond in a way that influences mood favorably. Happier facial expressions may influence mood by facilitating more positive social interactions with others (Heckmann et al., 2003). Finally, in line with the facial feedback hypothesis that inspired this study, frowning may in and of itself be depressogenic . Thus, reduction in frowning may be in and of itself therapeutic. We suggest that the brain continuously monitors the relative valence of facial expressions and that mood responds accordingly. We term this emotional proprioception (Finzi, 2013), and suggest that it represents an important pathway for the brains’ evaluation of emotional states. According to this model, the brain continuously assesses the extent of facial muscle contraction and muscle tension by proprioception. One can view the state of corrugator muscle tension as part of a neuronal circuit involving the brainstem, with motor input from the facial nerve and sensory afferents from facial and trigeminal cranial nerves. OBA treatment of the corrugator muscle, would interrupt the normal circuitry, reduce distress signals to the brain and thereby influence mood in a favorable way. This model is also supported by work showing that OBA treatment of the frown muscles modifies emotional perception (Niedenthal et al., 2009; Neal and Chartrand, 2011) and amygdala activation (Hennenlotter et al., 2009). “

I am excited and hopeful by this research and by my own results. As someone who has literally tried dozens of psychiatric meds over the past two decades, all with little, no, or worsening affect of my mood, thoughts, suicidal feelings and imagery, lack of connection to others around me. I think my nervous system has always been on the fritz, overworked and overwhelmed since an early age. My parents didn’t smile at me. I didn’t learn to smile, I learned to frown or be tense. I learned not to cry. I learned to suppress. Botox in my forehead took away my control of that tension and suppression and gave those tired muscles a break, and possibly, those tired nerves a break too. Make sense?

Some of the scientists seem very against this treatment, despite early evidence it works well. I can tell you that I had no cosmetic concerns. I don’t even wear makeup on a regular basis. I’m so fair skinned I have avoided the sun my entire life, so I don’t have wrinkles yet, only freckles. The Botox did make me appear more relaxed and less sad, but not younger. I was actually more self conscious of my appearance as the injection sites left red marks across my pale forehead that looked like the big dipper constellation that took weeks to disappear. I did not feel better about that. And yet I was already not frowning and not showing my pain as obviously, random strangers were not making the “you look tired, rough day?” comments to me.

And as I said, this antidepressant effect was not my intended goal. I was attending therapy to decrease suicidal thoughts and thought I had months or years to go. I was just bopping around the house when I realized they weren’t there, and then I had to think really hard about when was the last time I had one, (it’s a myth you always miss something when its is gone) so I checked my journal and it was the day before Botox. It is in my journal. Nothing entered after that. Woah, right? No pill has ever done that.

Now did my mother’s death and those events give me some soul searching and freedom of spirit also? Yes of course. And the success of my spinal surgery was of uplifting. Maybe all of these things needed to happen in combination. Maybe only one alone would have only given me partial relief.

I’m not going to waste it though. I’m going to use my newly found mental energy to continue healing, focus on my PTSD therapy, creating and conquering goals that used to seem impossible because I was consumed with simply wanting to be alive and fighting off those dark thoughts. I want to be a better me, a better wife, a better mom. Me…but healthy. Hard to envision, but still I do want it, and I won’t give up.

Because don’t get me wrong. I’m not cured. Although I think Botox may have helped me get further down my recovery path, I still have stuck points and fears and social anxiety and insomnia and nightmares…and the list goes on. But my depression has lightened, I can even feel some hope trying to sneak in, like a foreign invader.

I joke and smile and sincerely enjoy more moments of each day. I still struggle each day too. I still struggle to get up out of bed, to take care of myself, to remind myself I am worth all this trouble. The difference is now when I struggle, I don’t immediately think death would be better. In fact, I’m starting to think that’s a horrible idea, and that I really should stick around and start living this life for me, somehow. I don’t know how yet, but I’m confident there is a life for me on this planet. Somehow. (That is supposed to sound triumphant, not corny, so if you get it, you get it, if you don’t, well, then you haven’t been plagued by suicidal thoughts for most of your life)

PTSD – I do matter

past present future
all the same

lines blurred or no lines at all

superimposed

or worse

reality replaced

————————————–

(triggering)

I’m not psychotic or delusional but it feels that way at times as I’m a prisoner of my brain’s emotional and memory system and nervous system. I feel attacked in my own body. I feel like everyday places are dangerous to me because I feel like a vulnerable 3 year old child. No one held my hand then when the world was scary, no one encouraged or soothed me, no one taught me how to make friends or talk to people. Instead I was beaten down for trying, humiliated, shamed, emotionally tortured as I was isolated from mom, brothers, friends, only allowed to love AF. My brothers and pets were punished for my wrongdoings, causing me to strive for perfection and to further isolate me. AF’s plans were cruel and calculated each step of the way, much further than a little girl could ever know. I was always confused and trying harder to make him happy. The sexual abuse started the same way. At first it was warm and comforting to be held by him. And then his touch was confusing, but I wanted to make him happy. And it escalated over the period of years. I belonged to him – he didn’t have to rush. By the time it was clearly sexual and no  longer affection, I had no idea any boundary had been crossed. I had no boundaries. I wasn’t allowed to have boundaries. I wasn’t allowed to think or feel things – every thought or feeling was for AF and how to make him happy and protect my pets and get perfect grades and have a perfect body. I was already dieting and exercising per his plans in 4th grade and yet he daily called me fat, and daily bought me candy. And always laughed at me.

Some days I’m doing better to get his harsh words out of my head and replace it with compassionate self talk. But I still hear the laughter, his evil, gut wrenching laughter that makes me want to kill myself all over again.

Then I do some grounding exercises, deep breathing, remind myself he is gone, I’m a grown up, and I can keep going and keep making healthier choices for myself even though it is hard and scary and every time I try I hear him laughing at me.

Maybe one day I won’t. And that is why I keep trying. No matter how many days and how many times I crumple to the floor in fear and tears from the memory of what he did to me, I will eventually get back up, try again, because maybe, just maybe, tomorrow will be the day that I WON’T hear him laugh at me. And I’ll never know that if I give up today.

And he can’t win this. he just can’t.

I do matter.

What do I want?

Have you ever felt like you didn’t exist? I’ve had feelings of being invisible, like I don’t matter, like I’m nothing for most of my life. But sometimes, I realize I don’t even exist. Sometimes I feel I have lost my substance, and I am losing my grip on anything that matters. Like I am a spirit in a physical world and nothing makes sense.

Like when my counselor asks me

“What do you believe in?”

“What do you want?”

“What would make you happy?”

And all I can do is stare back at her in silence. I have no thoughts in my head. empty. I know what I used to want. I know what I used to believe. I know what I used to tell people I wanted. But was that real?

I am still confused, understandably so, as I am standing at my new beginning once again. Every time you imagine your end, you must recreate yourself anew. Although this could be a great time of growth if I can remain strong and positive, I find myself wavering, daily, and plain old tired. I feel pressured to step back into my old life, but my old life has repeatedly pushed me to my limits, so I seriously reconsidering this time. Proceed with caution. Maybe that life was not a good fit.

Or maybe it was and I don’t have the emotional regulating skills yet, or the other coping skills I need. Or maybe I am beyond repair and will never function properly. Or maybe I need to finish growing up, parenting my inner child. Or maybe I need to learn to feel safe before I can learn to want anything.

So for now my answer is still a blank, I don’t know what I want.

And that’s ok. Totally ok. I’ve never left a question unanswered before. I think this is growth that I can sit content with this unknown, content that I have time to figure it out, content that nothing bad is going to happen to me because I don’t have the answer. AF is gone. I can relax. I can say things “I don’t know”. I don’t feel stupid. I feel human.

I also feel like these answers are out there and are too important to rush.

So Many Mistakes, so much stress

So I’m here trying to feel grateful and not overwhelmed but really on that line still. Mostly now thinking how did I get here? What the hell happened the past 3 months, 6 months, a year??  Looking back I see I made a few mistakes, and allowed my stress levels to get too high.

Mistake 1 – Having no social support network and only trusting Hubby to judge my own stress and distress. Truth is, Hubby is not a strong, safe shoulder for me. My fears and doubts are met with either blank stares, his own fears, or anger. And yet I continually ask this of him year after year and expect him to be better THIS time. I keep hoping he will change. I have FINALLY learned this lesson and the need to expand my support network, to trust myself more, and to get more than Hubby’s opinion and help.

It was unfortunate timing that my trusted counselor of over a decade took an extended leave of absence during such a stressful period for me. I started working full time at a stressful new position, struggled with workplace drama hostility and ethics, then AF died and I didn’t know then the impact all this stress would have on my health.

I had no idea how to handle AF’s death. The man that was my entire world as a child, even though it was a wicked and twisted world, was gone. He was the one I called daddy for so many years. I discussed his passing, and his final attack in his will with the interim counselor, but I had never connected with her, and she didn’t lead me through any grieving process. I had no healthy way to process it on my own. No one around me thought it was worth discussing much, or knew what to say, or what to expect in how it could affect me. Even worse, I hid it from coworkers since I was not attending the funeral and didn’t want days off or to discuss it. So I got no sympathy, had to focus my wandering mind, got no flowers, nothing.

I should have given myself some time off, but I didn’t know then because I didn’t feel it then. I still felt ashamed, I didn’t want to burden anyone with my problems. I still thought AF was my terrible secret, all my own. His death stirred up all that in me initially, all those feelings of I must hide, and isolate, that I’d lose everything if they knew. And since Hubby and in-laws were so callous about it, and my FOO was useless as usual, I alone as usual. So completely alone. And then that terrible Will, where AF was so cruel again, and it hurt, and I felt it ‘shouldn’t’ and then felt guilty for it hurting. I should have maybe gotten a message to my counselor, I know now she would have talked to me, but I did what came naturally and started my self harm cycle of binge eating, not sleeping, isolating, and self loathing. Odd how the self harm is part of my self comforting cycle, when I’m hurting I need to hurt myself more. Where’s all that progress I supposedly had made? All of it gone because my counselor wasn’t there to help me? I felt like no one was there to help me and I kept saying how much it hurt, kept reaching out this time, but it didn’t matter, no one understood. I needed my counselor I guess. When I finally saw her in March, she saw the pain, all the weight gain, and had me sign a safety contract, she saw I was in crisis. That I needed a break. She recommended a weekend away. It was good, but too little too late. I should have done it months earlier.

I remember one terrible day of head pain 2 months ago, intense memories/flashbacks to daddy holding me tenderly enclosed in his arms, when I felt safe in his arms as I curled up in a ball and fit completely on his lap, I actually felt his warm arms around me, I heard his voice, felt his head on top of mine. It was a wonderful moment frozen in time, but then I also know his hands are caressing me, slowly in ways a daddy should not. The me I am now returns to present day and feels nauseous, the moment is over, and I’m so confused, like a short circuit, I miss that wonderful disgusting man. That is when I started to cry and could not stop. and the memories flooded in, but even more, the sadness. Oh my god the sadness. I thought my head would split open from the force of the tears and the sadness, and the guilt, and the shame.I had several events like this, each more powerful than the last. I called and made an appointment with a psychiatrist but it was weeks away, so was my next counselor appointment. I could not bear another flashback/migraine/grief/shame attack. I started drinking more and more. I was getting so on edge I couldn’t stay in the room with anyone else. My kids faces looked like a young me and triggered new flashbacks. I avoided them. I started my combo of drinking and cold meds to put me out, and this time I had muscle relaxers to add to the mix from the migraines. Those only gave temporary relief as I woke up more desperate each time looking for something stronger. I just wanted to stop thinking, not actually to die. I remembered something about robotripping and looked up dosages. I had half a bottle of dextromorphan added to my muscle relaxer/whiskey/tylenol cocktail one night. I think I already wrote about this, but I’m writing again anyway because it was so stupid. I blacked out and vomited and fell asleep in my toilet.

I could have died from that stupidity. I didn’t. And not because life has more torture for me, but because my liver did its job. And because we don’t know why things happen. Maybe the second I accept life and stop wishing for death a toilet seat will fall from the space station and kill me in a freak accident. We don’t know. I won’t fill this page with dishonest gratitude either that I’m still living. I’m not yet in a positive place so that wouldn’t be right. But you can all think that for me, no harm there. And all you lucky enough to believe in God to can say its part of his plan for me, no harm for you to think that either.

So – I quit my job, no notice. Just ‘sorry, I quit, effective immediately’. I asked Hubby and he agreed I should quit. I debated telling them I was struggling with migraines, and asking for medical leave. But Hubby and I decided this was best. We also decided it was best because we were planning to take me to the hospital.

I need to clear something up here. I never actually attempted suicide this time. I went to the hospital because I was so afraid that I might. I was still completely rational upon admittance. I even planned the admittance, it wasn’t an emergency trip or anything. I wanted to see if they could help stop the flashbacks and the sadness and the suicidal fears. When I saw that I was only able to work 5 hours the previous week due to migraines. When I realized I was spending most of my time in bed in a dark quiet room and would be unable to work the following week either, I felt like such a failure that I couldn’t even work part time now and find another job appropriately. Flashbacks were nearly constant, seeing anything, feeling anything – could trigger reliving long intense moments of my childhood. The strange part of these flashbacks is that many of them were not frightening, and did not leave me feeling afraid, they left me feeling sad – purely sad, sadder than I’ve ever known possible to feel.

I pushed too far and I broke. My body could not withstand those levels of stress and I was putting my trust in doctors to help me heal, to get some needed rest from the torture of my own brain.