the words we say

chronic illness, depression, keeping the faith, Uncategorized

There’s a poem I heard about two years ago that changed my life. Now know what I mean when I say this poem changed my life. I mean that it made a huge impact on me, my mind and my heart, it not only spoke to me but it taught me about myself, it made me not feel alone and so crazy, these words are in my mind and I think of them very often. When I first heard this poem I saw the author read it to a crowd in a video and there was something about the way she read it, I felt it with her. IMG_2530.JPGWhen I looked up the poem and read it for myself I began to cry because I wasn’t just feeling for her I was reading what I had been feeling in almost the perfect words. This poem was written by Sabrina Benaim and is titled “Explaining My Depression to My Mother: A Conversation.” The mom in this poem, to me, represents people and how I have felt trying to explain what I went through with my depression and what I still deal with to others. Both my mom and my dad were incredible when I was in my darkest days and have never questioned my depression for a moment, and for that I am grateful.

 

Explaining My Depression to My Mother: A Conversation

By Sabrina Benaim

Mom, my depression is a shape shifter.

One day it is as small as a firefly in the palm of a bear, The next, it’s the bear.

On those days I play dead until the bear leaves me alone.

I call the bad days: “the Dark Days.”

Mom says, “Try lighting candles.”

When I see a candle, I see the flesh of a church, the flicker of a flame,

Sparks of a memory younger than noon.

I am standing beside her open casket.

It is the moment I learn every person I ever come to know will someday die.

Besides Mom, I’m not afraid of the dark.

Perhaps, that’s part of the problem.

Mom says, “I thought the problem was that you can’t get out of bed.”

I can’t.

Anxiety holds me a hostage inside of my house, inside of my head.

Mom says, “Where did anxiety come from?”

Anxiety is the cousin visiting from out-of-town depression felt obligated to bring to the party.

Mom, I am the party.

Only I am a party I don’t want to be at.

Mom says, “Why don’t you try going to actual parties, see your friends?”

Sure, I make plans.

I make plans but I don’t want to go.

I make plans because I know I should want to go.

I know sometimes I would have wanted to go.

It’s just not that fun having fun when you don’t want to have fun, Mom.

You see, Mom, each night insomnia sweeps me up in his arms dips me in the kitchen in the small glow of the stove-light.

Insomnia has this romantic way of making the moon feel like perfect company.

Mom says, “Try counting sheep.”

But my mind can only count reasons to stay awake;

So I go for walks; but my stuttering kneecaps clank like silver spoons held in strong arms with loose wrists.

They ring in my ears like clumsy church bells reminding me I am sleepwalking on an ocean of happiness I cannot baptize myself in.

Mom says, “Happy is a decision.”

But my happy is as hollow as a pin pricked egg.

My happy is a high fever that will break.

Mom says I am so good at making something out of nothing and then flat-out asks me if I am afraid of dying.

No. I am afraid of living.

Mom, I am lonely.

I think I learned that when Dad left how to turn the anger into lonely — The lonely into busy;

So when I tell you, “I’ve been super busy lately,” I mean I’ve been falling asleep watching Sports Center on the couch to avoid confronting the empty side of my bed.

But my depression always drags me back to my bed

Until my bones are the forgotten fossils of a skeleton sunken city,

My mouth a bone yard of teeth broken from biting down on themselves.

The hollow auditorium of my chest swoons with echoes of a heartbeat,

But I am a careless tourist here.

I will never truly know everywhere I have been.

Mom still doesn’t understand.

Mom! Can’t you see that neither can I?

 

This poem was groundbreaking for me. I think it was the first time I had read something so powerful that hit me like a freight train screaming this is me. The last line of the poem is what I have felt like I’ve been screaming unheard screams for years. People tend ask me a lot of questions trying to understand what is happening to me. It’s not as difficult for me now as it was at first. At first, while I was in a whirlwind of medical madness, it was like I had fallen down the rabbit hole and everyone was looking into the hole screaming at me for explanations of what was happening. But the hole was dark and I couldn’t see anything at all, I could see no explanations not even something right in front of my face. I couldn’t find the words in my head and string them together to tell anyone that I was more curious and confused than they were.

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I spend a lot of time thinking and reflecting on things I have gone through and I think one of the big things I’ve learned is that we have no idea how we impact other people’s lives. The things we say and do may not mean much to one person but it could stay in the foreground of another person’s mind for most of their life. Words that don’t hurt someone may completely break another. I will never forget the stupid and insensitive things said to me about my depression and anxiety. In fact, there are some words and conversations I had years ago that I still think of often, though I wish I didn’t. Some words you choose to hang on to and others hang on to you.

 

I think there are make or break moments in life. There are times when we have the opportunity to build others up or tear them down, and I think a lot of the time when don’t realize it until it’s too late or maybe even at all.

 

When I hit 3 months of being in pain I was officially diagnosed with a chronic intractable migraine (meaning I had a migraine that wouldn’t go away). When my doctor sat me down and gave me what I refer to in my mind as the “chronic talk” he also told me he wanted me to see a psychologist. IMG_2525.JPGThis doctor was my angel on earth so even when he told me he was concerned I was dealing with depression as a side effect of being in chronic pain, he didn’t upset me. It felt like he saved me, I just didn’t know what from yet. So he told me I would need to see the clinic’s psychologist each week to work on how to cope with pain. I honestly had no understanding of depression. I didn’t know what it truly meant, I couldn’t recognize it, and I definitely didn’t know it when i felt it. So when the only person left that I hadn’t completely shut out met me in one of those make or break moments and said the worst possible words I felt myself slip away. Those words chose to hang on me and the conversation plays on a loop in my head on my darker days.

 

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There’s something about being told it’s all in your head that never leaves you. I know I’m not crazy now, but when you trust someone immensely and they tell you that it’s all in your head and you’re in your most vulnerable state what do you do? My world at that time was waking up and going to my doctor’s office almost everyday for IV infusions where I spent most of my time sedated in hopes I’d wake up in no pain. The only people I saw were my parents, my doctor, and the nurses. It took me hours to send a text to a person who I desperately wanted and needed to tell me it was going to be okay.

 

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Words matter more than we could ever realize. They affect each person in a different way. It is beyond crucial to think before you use your words. Sometimes something that is funny to one is offensive to another. Sometimes something that flies past one’s ear sinks like quicksand into another. Remember God spoke the earth into motion with His words, they’re that impactful. He created us all individually so that we may not only be different, but feel differently as well. We all have pain and struggles, some may even look alike, but we do not feel pain the same way. I know now that I’ve been through a lot, that in those make or break moments it is good to lean on those around you, but it is imperative to lean on the Lord. While some words will always stick stronger than others, they hold no comparison to God’s words.

 

 

Colossians 4:6 “Let your conversation be always full of grace, seasoned with salt, so that you may know how to answer everyone.”

Ephesians 4:29-32 “Let no corrupting talk come out of your mouths, but only such as is good for building up, as fits the occasion, that it may give grace to those who hear. And do not grieve the Holy Spirit of God, by whom you were sealed for the day of redemption. Let all bitterness and wrath and anger and clamor and slander be put away from you, along with all malice. Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you.”

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If you want to listen to the songs I was listening to when I wrote this click here.

hidden love

chronic illness, keeping the faith, Uncategorized

Growing up I always really loved reading, I still do. But I’m not one to pick up a new book immediately after finishing another. Usually a book impacts my mind and my heart so deeply I become completely consumed with feeling everything the author wrote. I can spend weeks sometimes even months hanging on words from just one story. I am obsessed with stories. I think we all are.

 

When I was younger I had an extreme obsession with an author who only wrote about young love that almost always ended with one half of that love dying. A lot of people hate to love books and movies about illness and love. I wonder about stories that deal with my kind of ongoing and confusing illness, what about an illness like mine and love? Where no one dies and the illness is dragged out indefinitely. Where there’s not some dramatic and dying element but there is a constant pain that never seems to go away. Sometimes it’s dull but other times it’s banging, beating, screaming. What about a love that goes on and doesn’t have some miraculous fight but goes through the pain that lasts longer than anyone cares to hear about?

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I am infatuated with stories. I love watching them on screens, reading them in books, in magazines, and online, being told them in person, and telling them myself. There’s a burning feeling I get after a story hits me hard, it’s a bittersweet burn that hurts but it lights a fire through me where I can’t shut off my mind. I can’t stop thinking about it, feeling it over and over, I feel the pain and the love and it makes me want to create something. It puts a story in my head I had never thought of before, it makes me paint because I’m feeling too much, it makes me feel things I never knew I could. Stories make me feel so fiercely that I’m reminded why I am alive.

 

I told you I had a deep obsession with an author. Her name is Lurlene McDaniel. She wrote about cancer, organ failure, horrible diseases, that all ultimately end in death. But every book I read of hers had this seemingly beautiful relationship. There was one person going through this horrifying struggle with their health, who is ultimately dying and the other is this amazing support system that doesn’t waver.

 

Honestly, this probably wasn’t the best thing I could’ve been fixating on. It put this idea in my head that when you’re sick you automatically have someone that isn’t related to you and doesn’t have to go through your sickness with you but chooses to be there for you regardless. When I first got really sick my last semester of high school I was in a relationship and had been for awhile. I didn’t realize it at first, but what all of those stories I had read and been so attracted to were missing was how hard it is to be in a functioning relationship when your entire world is now unfamiliar territory. In a traditional wedding ceremony there is that line that is said, “for better or for worse, in sickness and in health,” where you promise to be there and love your partner no matter what. But when you’re dating and you’re so young there is no covenant made to be broken, there is nothing that says you’re expected to hang around through life altering challenges. You can’t expect someone to flip their world upside down and join you too, you hope for it, but you can’t ask them to.

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When I got really sick my senior year I was in a whirlwind and I didn’t know what to anticipate. I didn’t know how serious things were or if I would be better the next day or in 2 years. When you’re in constant pain and being “normal” is such a challenge it’s hard to know what to expect of people around you. I still read books about illness and love sometimes because they’re so interesting to me. I look back on my own journey and the people who have been there for everything are my parents. My mom goes to all of my doctors visits with me and if she can’t be there my dad is or my aunt. I’ve learned it is really hard for someone to go through something with you when they’re not there witnessing it firsthand, seeing everything that you’re going through. Those stories put this idea in my head that there would be someone else who didn’t have to go along but chose to because they loved me enough to go through every dark day with me until I had a good one.

I’m not going to lie to you, after all I promised to be as transparent as I can. My faith has been a wreck more than it’s not been throughout my time being sick. I’ve spent a lot of time being mad at God and ignoring Him, sometimes intentionally and sometimes not. I get preoccupied with my anxiety over appointments and treatments or when the pain feels like it’s never going to let up to get even the slightest relief and I forget. I get so busy trying to hang in there and just survive that I forget about who has been by my side the entire time, even when I’m alone and I think no one sees me fall apart. I spend time wondering why I am not like the people in the stories who has that person who chooses to be there through the chaos of sickness, when all along God has been beside me. I’ve been angry, broken down, confused, emotional, unemotional, and have chosen to ignore Him and yet He still stays. He chose me, He loves me, and He walks with me, even through my darkest days.

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Zephaniah 3:17 “The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.”

Psalm 139:1-18, 23-24 (NLT)

“O Lord, you have examined my heart, and know everything about me. You know when I sit down or stand up. You know my thoughts even when I’m far away. You see me when I travel and when I rest at home. You know everything I do. You know what I am going to say even before I say it, Lord. You go before me and follow me. You place your hand of blessing on my head. Such knowledge is too wonderful for me, too great for me to understand! I can never escape your Spirit! I can never get away from your presence! If I go up to heaven, you are there; if I go down to the grave, you are there. If I ride the winds of the morning, if I dwell by the farthest oceans, even there your hand will guide me, and your strength will support me. I could ask the darkness to hide and the light around me to become night—but even in darkness I cannot hide from you. To you the night shines as bright as day. Darkness and light are the same to you. You made all the delicate, inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex. Your workmanship is marvelous—how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me God, the cannot be numbered, I can’t even count them; they outnumber the grains of sand. And when I wake up, you are still with me. Search me, O God, and know my heart; test me and know my anxious thoughts. Point out anything in me that offends you, and lead me along the path of everlasting life.”

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If you want to listen to the songs I was listening to when I wrote this click here.