Hope is not what we say it is

Hope is

the thing with feathers

Hope is

a light at the end of the tunnel

Hope is

what you have when there is nothing else

Hope.

The word is everywhere. Countless organizations feature the word hope as part of their mission or tagline. Entire political campaigns have been built around it and succeeded.

It can be a powerful word. In the right context, it ignites a certain feeling in us. It can make us believe in seemingly impossible things. It can keep us going when we are at the end of the road and have nowhere to turn.

But sometimes, it feels like a tired word. It’s overused, said sometimes with the intention of sparking a feeling but with no actual meaning behind it. It has become synonymous with toxic positivity- “good vibes only” or “just think positive and everything will be better.”

It’s used sometimes when we’re not willing to accept the problems and work toward real solutions. “We’ll never make things better, but at least there is hope.” The problem is hope without action is hopeless.

Accepting an ethereal concept of hope can keep us from pushing forward and making necessary but hard change. The word can be used as a crutch.

So what is hope and how do we keep it from being an empty word?

What is hope, really?

I believe hope is not what we traditionally think it is. It’s not the message we’re pushing, not what the mainstream would have you believe.

It’s a little word with a lot of complexity behind it. It’s a word that means different things to different people, and it is not always something helpful.

I have felt hope, that desperate kind. The kind your calloused fingers brush in the dark. It’s not always a pretty color or soft, but once you’ve felt it, just the start of it, you pull until you have it all.

When you have that piece of hope safe in your arms, no matter how fragile and ragged it is, you hold it tight. You don’t exactly care what it is or what it looks like, just that you have it. You don’t have to understand it to feel it.

Hope is the patterned gauze over our wounds. It is a delicately woven web. Hope is what binds us like the pages of a book when we are falling apart.

Hope is for all times, but especially the dark ones.

If we don’t have hope, do we have anything at all? I’m not sure the answer.

Accepting an ethereal definition of hope can keep us from pushing forward and making necessary but hard change.

I learned only recently there is research on hope. The most pervasive theory of hope, aptly called “Hope Theory” by CR Snyder, argues that hope is “the perceived ability to produce pathways to achieve desired goals and to motivate oneself to use those pathways.”

This theory posits “high hope” individuals view challenges as barriers to overcome whereas “low hope” individuals see these barriers as insurmountable and have more negative outcomes. Those with hope accomplish more and get through more of life’s shit.

In this way, we use the word “hope” as a motivator, as a way to try to pull people out of the darkness of their minds and get them moving toward a place where they can achieve things. This place can make them, and definitely others around them, more comfortable.

I haven’t done extensive research, but this “hope” feels more about our perception of what they’ve accomplished than something born within them.

The trouble is hope is not always obvious, thus why it can feel natural for some to tell a person what their hope should be. It can be difficult to find when you are battling your mind. Hope is sometimes the belief that you will again find that thing that keeps you going, because you remember how you found it before. It can be just holding on, even if only by your pinky finger.

And what about when hope goes away suddenly. What then? Sometimes the tiny piece of hope you’ve scrounged away no longer suffices. Hidden away like a tiny corner of your childhood blanket, it has become tattered, dirty, and no amount of washing or sewing will make it new again. So you go searching again.

We want so badly to know what hope is. It’s a concept we want to dissect, to carefully pull apart its components and declare we have the answer. But I’m not convinced it’s something we’ll ever accurately fit into words.

A better message of hope for those with mental illness

“Just have hope things will get better”

“There is always hope.”

These are things people may say to those who are struggling because the pain makes them uncomfortable or afraid. It is not an easy thing to sit with someone in their pain. We may say these things because we don’t know what else to say. We just want them to move on, to feel better.

But saying “there is hope” to someone going through a tough time doesn’t equate to a person feeling hopeful.

This overreliance on the word hope can be suffocating for those in pain. As David Kessler says in Finding Meaning:

“Hope can be like oxygen to people in grief. For others, however, especially in the early stages, it can feel invalidating. “In my sorrow, how dare you want me to feel hopeful…about what? Do you need me to hope to make you more comfortable?”

Sometimes you think there must be no hope and no amount of people telling you it will be okay or “just have hope” will make any difference. In fact, hearing this can be downright disheartening.

A person may wonder: What is wrong with me that I can’t see the positive? Am I broken beyond repair? Do they just want me to say I have hope so they can feel better? Is it really about how I feel?

Saying “there is hope” to someone going through a tough time does not equate to feeling hopeful.

Hope used in this way can be dangerous for those without hope. We need to stop using the word “hope” like it is an antidote for those struggling with their mental health. It is used in a way that renders it empty, meaningless. It can leave someone feeling the opposite of what we may be intending.

Instead of plastering the word “hope” on a billboard and calling it a day, let’s show hope. Let’s embody hope. Let’s help someone find that tattered piece of fabric to hold tight. Let’s be that for someone.

Let’s create more opportunities and offer more help. Instead of turning away, let’s challenge ourselves to sit in the middle of a raging storm with someone.

I think if we put more action behind the word hope instead of just saying it, we would create more hope for people struggling. We’d make more things worth hanging onto.

Let’s work toward a world of hope, a world worth living in.

Phosphosenes

Jesus’ stained glass
face and velvet tears 
on the altar 

when I dug thumbs
deep into my ears to forget 
His name 

&
pulled out a line of contempt
woven around a wedding ring

I pushed fingertips into my eyelids
while you told me I held the world
in my tiny pink hands

Psalms became paragraphs of 
Noonday Demon in the pew
when sermons
couldn't sustain me

Pray to a mother pristine as Mary, 
but the one I found
clawed holes into her feet

There is no nightmare, 
only a never-ending dream, 
only a figment of my 
indignation

HERE I AM 
my palms scream
when the creases refuse to meet 
fortune	
	but run parallel silently 
into my cup

Perception is the shattered glass
of a grandfather clock
ground into the floorboards
of my childhood home

and I’m holding the bat

Panic, my story- part 1

I had my first panic attack my sophomore year of college. I was sitting in my then boyfriend’s apartment, on his roommate’s ugly hand-me-down couch. We were watching something on Netflix, getting ready to go to a party.

To echo the common description of panic attack symptoms, I felt like I was having a heart attack. Some invisible being was choking me and I couldn’t stop it. I wasn’t breathing enough to supply enough oxygen to my brain and the rest of my body. Parts of me, my feet, my hands, tingled and then went numb.

When your body doesn’t have enough oxygen, it hoards blood in the important parts, the heart and the brain. My heart was moving faster than I could understand why. When I held my hand to it, I could feel it pulsing.

I tried to move from the main room to the bed down the hall, but instead blacked-out and fell into a wall, afterward wondering how to cover up a broken nose so my parents wouldn’t ask about it the next day.

I begged the boyfriend to take me to the hospital because I swore I was dying. There was something wrong with my heart, there had to be. I had no idea what panic attacks were. I thought they were only for super stressed people. I thought it was a fluke. A one-time thing. Nothing more.

For most people, they have one panic attack, or a few isolated ones, and they move on with their lives. It usually happens during a stressful time, maybe finals or losing a job. But for me, something in my brain changed that day and fear became my natural response to everything, like when I let my brain convince me a scary movie is something to worry about. (I used to love scary movies. I’m just now starting to get back to that.)

Sometimes barely anything sets it off, a terrifying chain reaction. Other times it happens during potentially life changing moments, like when I learned my deceased grandmother was schizophrenic. And although that panic attack somehow seemed justified, it didn’t make it any easier to experience.

After the first panic attack, the attacks continued and became far worse. My panic attacks rarely have a trigger, a characteristic that makes them absolutely terrifying.

My throat closes. There is something stuck in my chest and I am gagging, trying to get rid of it. Sometimes I actually throw up, and I feel better for a moment. I wonder, maybe I really am sick, physically. I wish it were true. But I know better. It’s 4 in the morning. I pace back and forth in the hall in my pajamas. For a second, I feel better. Maybe I can sleep.

I return to my bed. My bed feels like a coffin. Once, the familiar softness of my sheets was enough to bring me back. Not this time. I get up again, resume my pacing. The deep breathing stops the frenzy temporarily. But the terror comes back in waves and stays with me, courses through my body for an entire night. The attacks usually happen at night, when everyone is asleep and I am alone with my thoughts.

The next day, I wonder how it is at all possible I am still alive. My heart physically aches. (People with panic disorder are more likely to have a heart attack or develop heart disease. I think of this when I am panicking). My brain is so exhausted I can barely convince myself to get out of bed, even though I need to get out of that bed. It is covered in sweat.

I need to resume living. I am weak. Sometimes my stomach is empty from vomiting, but I cannot even think about filling it because my throat is still closed and my mouth has the texture of cotton. I move to the couch because the bed feels and smells stale.

The lowest points begin the day after a big panic attack. I look at everyone around me—the trash collector, the girl walking down the street—and can’t even fathom how they can deal with life. The easiest things—eating, laughing, seem impossible. In fact, I can’t get myself to do either. My throat is still closed. Even the most familiar things become new and I am back at the starting line—a squirming, fearful baby confused by everything around me.

There are instances where my experience begins to parallel a broken reality and the fear sets in. In these moments, I think of my grandmother and her paranoia. Sometimes the attacks were so bad I sat up all night tremorring, the muscles of my legs spasming as though there was creature moving inside me.

On the outside, I looked normal. My roommates would never know unless I told them. But inside, my brain was functioning on overdrive, afraid of nothing and somehow the entire universe at the same time. As though some invisible person held a gun to my head.

I want to think my deceased grandmother could understand me more than most people. That if I told her what was wrong with me she would nod with recognition. Craziness—a concept developed in contrast to the sane. A concept to isolate those not congruent with the rest of society.

The break from reality is the ultimate characteristic of schizophrenia, into another world perhaps. I remember looking up at the pictures on the wall next to my bed during a panic attack and not recognizing my friends. I felt no affection for them in that moment. Was that a break? The thought sparked another wave of panic. I rolled over onto my side, away from the wall.

Don’t ask if I’m going to have a panic attack

Here’s two pieces of good advice regarding mental illness:

  1. Don’t ask a person who hallucinates what they are seeing and where
  2. Don’t ask a person with panic disorder if they are going to have a panic attack

Here’s an example of the second:

You know I have panic disorder and you are asking me to do something. You ask whether this will cause me to have a panic attack. Or you ask if the stress of what you are putting on my plate will cause me to panic. Or you say “don’t panic.”

Seriously, why do so many people think it’s okay or even funny to ask a person whether they are going to have a panic attack at that moment? I’ve had people ask it with a chuckle.

This is no joke. This is my life, my experience, my mental well-being.

You may assume because I have panic attacks I can’t function with the realities of every day life. That I can’t handle stress. This is not true. I balance an incredible amount of responsibilities.

And although stress is one of my triggers, this doesn’t mean every time I experience any amount of stress I automatically freak out. You are belittling my actual triggers and using them as weapons against me.

This assumes I have no control over the panic attacks, a dangerous idea. I rely heavily on a mental wall I have created that tells me I can fight panicky feelings. That just because I am panicky, this does not mean I will have a full blown panic attack. That I can fight it and I can survive. I rely on this strength I have cultivated.

I’m also not always having panic attacks because I live with panic disorder. It’s a myth that everyone who has a mental illness experiences symptoms 24/7. A lot of mental illnesses have periods of symptoms and ones with fewer or no symptoms.

And most of all, you don’t ask a person who is hallucinating what they are seeing in that moment and where because it makes it real. It is real life interacting with the unreal. For someone who sometimes has trouble deciphering the two, you are adding to the confusion.

The same things apply to panic attacks. You are inadvertently telling my brain there IS something worth panicking about.

If you learn I have panic disorder and it makes you feel confused or awkward, go ahead and feel this. If you don’t know what to say, that is okay.

I know you may not understand or believe this is an illness. Because of this, you may think panic attack triggers aren’t a real thing.

Don’t try to deflect this feeling or cover it up by making a poorly thought out comment. Do better.

A brain can come up with enough things to panic about on its own. I don’t need your help.

Getting over a mental health relapse

I had my first major panic attack in several years.

YEARS. I had deep-breathed my way through those years. I had maintained medication, moved to the city, and started grad school. Then it hit me.

It hit me hard. It felt like a sign of complete and utter failure. A relapse. Square one. I felt stuck. It’s hard to get back to normal when the normalcy you enjoyed for so long is pulled from under your feet.

For years I built a wall of comfort to stave off anxiety. I gathered friends, animals, and photographs. I had my medication. I had my books. I lowered my stress level. Still, my insides feel no less vulnerable than years ago. At times, I still feel like a child afraid of the boogeyman.

I learned quickly comfort is not everything. This can be a disconcerting realization. It can make you feel hopeless.

When the calm no longer calms

What do you do when the tricks that worked for years don’t work anymore? When comfort no longer comforts?

I became used to the equation: Anxiety + Comfort= Anxiety goes away. Voila! No panic attack. It’s never that simple, though. Something subjective like comfort doesn’t work all the time. Heck, medication doesn’t always prevent relapse.

It can be especially difficult to swallow when there is no concrete reason for the relapse. Before this panic attack, nothing particularly stressful had happened. I hadn’t stopped medication or traveled to a new place.

With a mental health relapse, it is easy to feel like everything you worked for disappeared instantly, to feel like you are no better at overcoming this than you were before. Succumbing to this thought is dangerous. It can lead to giving up on what is working–medication, therapy, exercise.

Recovering from a relapse is all about re-framing it. It’s about changing the narrative in your head.

Here’s how I dug myself out of a mental health relapse:

 1. Celebrate

It’s important to go back to what you learned, to celebrate the progress you made. Think about the times you could have fallen back into your illness, but didn’t. Those are huge accomplishments, even if they seem moot now.

What did you learn that helped in the past? Write these things down and read them over and over. Even if this list didn’t work this time, it worked at one point. This means it could work again. Focus on the positive. Celebrate.

2. Strengthen

Strengthen your mental health strategy. Try a new therapy or form of exercise. Start hiking. Join a support group. Meet people who understand what it is like to live with a mental illness. 

Consider talking to your doctor about altering your medication. This isn’t essential, but may be helpful if the relapse was severe.

Doing something will not only help prevent a relapse in the future, it will help take your mind off your current slump.

3. Embrace

This one is the hardest for me.

Embrace the uncertainty. Realize you will likely have another relapse. This panic attack was not my last. I don’t exactly love this thought, but I accept it. As hard as it is, I realize panic is a part of me. It is something I fear, yes, but I don’t need to.

Don’t give up because the relapse happened. Take what you can from it and move forward. Don’t think about when it will happen next, just focus where you want to be.

Mental health is a journey. It’s not this one event. It’s a series of moments. It’s not where you are at this exact moment, it’s where you want to go.

Celebrate.
Strengthen.
Embrace.

Repeat this to remind yourself of what is important when you need it the most.

What do you do when a healthy mind suddenly becomes ill again? How do you bounce back?