Chronic disease

Forty Balloons

~ Amelia ~ 4 Comments
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I think it was right around 10:17 am when I looked at my van clock in near tears. I thought to myself, “you can’t give up on today. Not yet. It’s too early. Plus, it’s hard to blow up balloons when you’re crying.” I had to do something right. I had to blow up the forty balloons when I got home. For my husband’s birthday.
He doesn’t expect the crazy balloon and streamer decorations. He’s quite simplistic and grateful and rather content with a hug and a pseudo-shout of “Happy Birthday!”
But I needed to blow up the balloons for me, I think. I felt defeated. I had to accomplish a small victory.
My lungs felt great so I knew I could blow up the balloons if I only took some deep breaths. And turned on some music. One of my handy dandy Spotify playlists. My “churchy songs.” Then, while the music filled me, I let myself have a brief imaginary conversation with every impatient and apathetic front desk receptionist I’ve encountered in countless doctor’s offices. Over the past twenty years.
Keep it brief, Amelia. Nothing to see, folks. Just a brief imaginary one-sided conversation.
Because it’s not fair. And I don’t care if it’s a weather condition. It’s not fair that I can call my doctor’s office three separate times and ask for my records to be faxed, transferred, or copied. They can tell me they did it. Several times. Then, I can show up at my long awaited appointment and it hasn’t been done or somebody has misplaced my medical records. And it’s somehow my fault. Because I can’t go behind the desk and do it myself. It’s not fair that I have to drive from an imaging center to a specialist’s office and then I’m supposed to drive to another doctor’s office. It’s not fair that I could not be seen by the doctor because I left my insurance card at home. It’s not fair that everybody in the office has a driver or a companion or a helper and a good twenty to thirty years of age on me. Someone was snoring in the waiting room. Full on snoring.
Cue the off rhythm lap drum roll with cymbal finale. CRASH!….Life’s not always fair. One tear. Two tears. Three tears. Smeared mascara.
It seems like I wasted an entire morning. And I just want to go see my grandma.
But I can’t. Pause. Sit. Bend. And move forward.
I do what I can.
I’ve started to be more aware of how I talk to myself. My inner dialogue. I’ve tried to be better at treating myself like a friend. A good friend. A dear friend. I write the raw smeared ink thoughts down to myself. And for myself. I feel them. I read them. Then, I write down the motivational and encouraging ones too. Friends make mistakes. Friends forget things. And I readily forgive my friends. Should I not be so kind and compassionate as to allow myself to make mistakes from time to all-the-time too? I know the answer lies patiently in my heart. Well, it’s tossing and turning and restless sometimes too. In the fresh mess of my thoughts and emotions, I easily forget.
Be kind and patient and loving and forgiving of yourself. Then, you can be that way towards all those others too. All those others that you love so much. All those others who love you, too.
I did it today. Perhaps I can thank my husband’s fortieth birthday. Or God’s presence and all those churchy songs. I turned an upside down morning, a damn near sob fest, into a no-name small venue sort of opening act of tears. Then, I blew up all the balloons. The forty balloons. I wrote, I listened to music and my mood shifted. I inhaled and exhaled the air from my healthy lungs and transferred it into the brightly colored balloons. I escaped far away from the frustrations and uncertainties of my body’s physical malfunctions and the doctor’s office. ALL of the doctor’s offices. And it felt good.
I cleared my negative thoughts. Goodbye. They may have travelled into all of the balloons. I think when they’re airborne, they die pretty quickly. But I did it. I really did it. Later, I could have stayed home but I didn’t. I went and met a friend for a quick fifteen minute lunch before I picked up my son from kindergarten.
Today, I’m thankful that I chose to control the controllable. And cope using the best ways that I had in stock and ready to use. I’m grateful that I had the strength to blow up all of those silly balloons. Ahh. The healing power of latex. Balloons. Latex balloons.

Healing Crohn’s Disease

~ Amelia ~ Leave a comment

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I’ve had Crohn’s disease for nearly twenty years. Even, at times, when the disease is in remission physically, it never lies dormant in my thoughts, emotions, or in my soul. It alters how I live my life in both the beautiful positive ways and the ugly and debilitating ways.

A chronic disease can be completely overwhelming at times. It can feel like being trapped in a prison cell. It never goes away. That piece of knowledge can haunt you and capture you. It can  make you feel alienated, confused and depressed sometimes. It can feel like nobody truly understands. Maybe they don’t.

I’ve had to get creative and find ways to escape the lifelong sentence of my chronic disease. I wasn’t made to be imprisoned. I force myself to look outside, make a plan and know that I will do great things once I’m free. I find ways to sneak past the warden, who I’ve  gotten to know pretty damn well over the years. It’s myself. No matter how many things in my body get scarred, altered, rearranged, or broken, I will forever hold the key to my freedom. Resilience, perseverance, humor, faith and hope help me dig the tunnel out. Sometimes, I force myself to follow the tiniest glimpse of light.

Healing is an ongoing process.

Healing is acknowledging my fears but not inviting them in for dinner. Healing is exterminating shame. Healing is letting myself feel the weight of it all: the unfairness, pain, loss, anger, and sadness. Healing is sharing my story and listening to other’s stories. Healing is giving myself the same extraordinary compassion I so freely give to others. Healing is forgiveness. Healing is changing, growing and evolving into a different person. Healing is allowing the hundreds of disease-related experiences to affect me. Healing is granting myself the permission to be different. Healing is acceptance.

Healing is always searching. Healing is often found in helping others. Healing is possessing a willingness to go back the opposite way through the tunnel I’ve dug, back to the darkness, to the prison cell of another. Healing is holding another’s hand, looking into another’s eyes. Healing is seeing a glimpse of myself in a hurting child, a lonely mother and a dependent elderly patient.

Healing is a gift that I open over and over again throughout my journey.

Healing is finding and seeing the beauty in the closing of wounds or watching the water run over the bright red flesh sutured outside of my abdomen. Healing is standing outside and staring up at the mesmerizing flight patterns of the barn sparrows. Healing is hearing my children’s laughter, holding their hands and answering their innocent questions.

Healing is my husband’s relentless, supportive, unconditional proud love for me. Healing is loving him.

Healing is everywhere.

Healing is found in accepting encouragement, love, support, bear hugs and help from those who surround me.

Crohn’s disease is healing.

I am healing.

 

 

 

Undressed Emotions

~ Amelia ~ 4 Comments

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I guess I will get my emotions dressed up for you. You seem to handle them better with make-up on. All nice and pretty and seemingly unaffected by the storm of life happening around me. I don’t like to pretend but I can’t handle the pain of my feelings being used against me. So, I will disguise them in humor or unrealistic optimism and perhaps a bit of exhausted joy just for you. Then, you will feel better about me. And my diseases.

Every day I wake up, in the middle of the night, like tonight, and I live my life with diseases that let their presence be known. Always. Every single day. I don’t forget that I have them. Ever. My body won’t let me and neither will my heart and mind. That’s the definition of chronic. But I make a conscious decision daily: I choose to rise above the pain, the frustrations, the inconveniences, and the disabilities. It’s an extremely delicate balancing act which is difficult because I’ve always been a bit clumsy. If I talk about it too much, I’m perceived as letting the disease control me or define me. If I don’t talk about it all, I’m somehow resilient yet I feel ashamed, dishonest and like I’m denying myself of tiny, yet powerful everyday kind-of luxuries that I grant to those whom I love. When I say luxuries, I mean vulnerability, compassion, grace, forgiveness and honesty.

Most days, if you looked in on my life, you would never know the burdens that I carry. Because I probably don’t want you to. I don’t want your pity, your hopeless looks or your unintentional alienation. I also don’t want to feel so damn different that I become the chameleon who is awkwardly late to adjust to her new surroundings. I know I’m different. But I also believe that, thankfully, we all are. There’s no possible way that nearly twenty years of chronic disease cannot impact your physical, mental and emotional well-being. It affects who you are, how you relate to others and all the ways that you live your life.

If I show you or tell you about a horrible experience or a day that will make you want to cry, it’s because I trust you to handle my disease in a dignifying way. Or perhaps I’m willing to sacrifice a bit of my pride or privacy in hopes that you will grow in your understanding, compassion or sensitivity to others around you. I’m not trying to gain attention to boost my ego. But is it helpful when people who I value encourage me? Yes. Especially in the moments when I’ve been wounded so deeply that I’m tempted to never speak of this disease again.

I will pull myself back up again and remind myself that oftentimes I speak for a group whose voice has been muffled or lost or ignored. Or misunderstood.

I will write for the mothers who are too damn tired because I have strength in this moment. I will write for the daughters who are scared and hopeless and feel excluded. I will write for the boys and men who have been told they should keep fighting yet that they’re not supposed to cry. I will write for anybody who has ever been momentarily bullied by life. I will write for all those who feel the shivering, aching presence of grief. I will always write because the light, the good, and the extraordinary capabilities of the human spirit triumph all of the shit. Time and time again.

Life is rarely a bowl full of cherries but that doesn’t mean that it still can’t be something pretty great.

I guess I have changed my mind. And my heart. Again.

I will not dress up my emotions and feelings to make them prettier or easier for you to handle. They are real. Raw. Truthful. Difficult. They are joyful. They are powerful. And they are practically impossible to conceal. I spent many years pretending and hiding and being truly myself to only a handful of people. Fear had a tight grip on my shoulders. I didn’t fully trust God’s beautiful awesome power to use the bad to cast a spotlight on the good. Thankfully, I have adapted and evolved over the past twenty years. God continues to perfectly place people in my life who fill me and strengthen my soul with hope.

The beautiful, rare and unexpected gifts that accompany pain and chronic illness will always loosen the ever-present restraints. I breathe easier with an adjusted perspective, overwhelming gratefulness, a heightened awareness of mortality, and the undeniable presence of being surrounded by unconditional love. Thank God for the camouflaged gifts and for all of those who graciously give my heart more space to grow through it all.

 

Nobody Understands Land

~ Amelia ~ Leave a comment

It’s a dark and lonely land. You don’t go there often because you know that not much good comes out of even a brief visit there. It’s totally quiet in the house. After bedtime. Outside your window, you can hear the crickets and locusts talking nonstop to the moon but that’s about all.

It’s nighttime.

You’ve somehow managed to make it through another day, but you’re so tired. More like exhausted. You desperately need rest. You crave sleep because your body keeps borrowing calories from itself to fight the diseases. Your diseases.

You let yourself think about it momentarily. Living with chronic illness. Even when the physical symptoms subside, the emotional and mental drain persist. The disabilities you think you disguise so well in attempts to not gain pity or unsolicited attention, worry or that look in another’s eyes.

But tonight, you let go. You give yourself the freedom to temporarily think about all of the hardships. The many ways your life is different, more difficult. How even now in the dark, by yourself, you’re afraid to take the deep breaths that you need because you may start coughing. Damn lungs. Then, your guts will ache. Damn guts.

Your sad late night thinking helps you catch the red-eye flight. Destination: “Nobody Understands Land.” You’re on the plane. Without flight attendants. All alone.

You arrive.

Hello, there.

Welcome to “Nobody Understands Land.”

Only nobody is there to greet you. It does not feel like an all-inclusive vacation. Or a romantic get-away. It feels cold. Empty. Desolate. It feels like you’re standing in an uncomfortable place. A place where your thoughts and feelings chose to go. But strangely, your weary body knew better. You don’t have a jacket. Big surprise: all of your luggage got lost.

Everyone you were traveling with must have hopped on a different plane. A plane that you could have caught a long time ago before your life changed forever. Before you got sick.

Your life is different now. From all of theirs.

Tonight, you’re right. Nobody understands the pain of living with the daily physical reminders of your fragility. Your broken guts. Your struggling lungs. Your twisting kidneys. And all of the other parts that ache or quietly whimper. Nobody could possibly understand the isolation associated with the millions of different directions your diseased thoughts can go.

Yet, somehow their favorite guilty pleasure and escape is, “Nobody Understands Land.”

Only, it feels hopeless there. It should never be a final stop. A brief lay-over might be okay. A place to sit for a moment. “Alonely,” as one of your boys might say. You stop, sit down. You think and think until you feel a tapping on your shoulder. That nudging. Oh. God interrupts you, picks you up and carries you to catch your flight back home. As you’re in God’s arms, you look around. Ahhhh. You see. It’s not empty. It’s not so dark anymore. There are others. Tons of others. All of them are looking down as they hold their heads in their hands. You can’t leave yet, you need them to know too. They are not so different. They are not all alone. You see them. You need them to see you too. You jump out of God’s arms to tell them that you understand. Because you do.

Every single time, He gets you out of “Nobody Understands Land.” Because it’s not true.

Somebody always understands. Somebody sits in the chair and aches right next to you. Perhaps a different physical hurt but somehow the same feeling. A universally understood hurt. Empathy can be real. There’s always someone somewhere who gets it. Someone who truly understands or wants to try and understand. Someone who feels your pain, recognizes the pain in your eyes and wants to take it all away. But since they cannot, they sit next to you. Holding your hand so you can feel their presence or so that they can feel yours.

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You are not alone. You never have been. You never will be.

Somebody always understands.

Thanksgiving Day Birds

~ Amelia ~ 2 Comments

imageMy rational thinking mind knows that it’s pretty selfish to assume that God sent hundreds of different kinds of birds to my backyard this morning. It felt like a beautiful gift. Just for me. Perhaps, He sent them to bring me hope or joy or to peck away at my grief or sorrows, my heartaches and hopelessness.

Despite my disbelieving mind, my spirit-filled heart completely trusts and believes in a God that hears my cries and hates for me to feel the heavy burden of grief, loss and heartache. I believe that He hates for me to be trapped in my feelings. Isolated. All alone. I believe He lifts my chin and helps me see the beauty, the freedom outside my window.

So, as I sat staring out my kitchen window in amazement and wonder at the sudden appearance of all of the Thanksgiving Day birds, my soul surrendered to the simplicity, the beauty, and the ease at which His tiny creatures fly from branch to feeder to fence post. I made eye contact with one of my favorites, the yellow finch, “my Grandma bird,” whose feathers have transformed to accommodate the next dreary season. No longer the striking, bright yellow summer feathers. I sat close enough, only a few feet way, separated by glass. I could barely see the pale yellow neck feathers hidden beneath the new tree trunk-brown winter feathers.

In moments like these, I feel my Grandma and I miss her in an indescribable way. I want to be in her presence. I want to hear her voice. I want to feel like everything is going to be okay. I don’t know that she understood the secret gentle power she possessed. The ability to heal my aching heart.

She had this instinctual ability to relate to me on a level that few can. I miss her honesty. I miss her openness with her feelings, the joyful and sad, painful-to-hear ones and all of the complicated ones in between. I miss the little things, like sitting next to her and filling her cup up with fresh iced water. I miss watching my boys run down the hall to swing open her door and surprise her. I miss her sweet voice telling me some powerfully encouraging words. I miss hugging her and telling her, “I love you, Grandma.” I miss her habitual response, “I know you do. I love you, too.”

Holidays are typically supposed to be happy times but they can be so hard when you’re missing a person. They can serve as a painful reminder that someone who was always around is not here anymore. Just gone. The robins, blue jays, yellow finch, doves, cardinals, and all the other birds flying around today reminded me of my Grandma. I like to think of her as strong and totally freed from pain. I like to think of her. I’m grateful that the zipping crowds of birds outside my window helped remind me of her and her never ending love.

Kidney Stones

~ Amelia ~ Leave a comment

Awwwww. How cute. What a kind and polite anatomically correct use of medical terminology. Stones are fun for kids and grown-ups a like to hold and collect. And kidneys, aren’t those your pee makers? Well, I have got news for you, when one of those sleeping little “kidney stones” wakes up and decides to go on a road trip, aka fly the kidney coup, they become, “mother fuckers.” That’s what us stoners call them on the street. I just made that up. I don’t have a support group of “stoners” that I ran this blog by first.

If you’ve ever had a mother fucker, you know what I’m talking about. You feel me. You got me. 100%. Solidarity.

Because there is just no nice way to put into pleasing-for-your-conservative-grandma’s ears the amount of pain they cause. Trust me. I’ve experienced a crud ton of pain in my life, too. I always think it’s funny when someone reports on a pain scale of 1-10 that they are a “10.” You’re a 10? Really? You’re so cute. The only problem is you don’t kindly say a 10, you fuckin’ look a 10. You moan. You’re on the ground. You think it’s absolutely ridiculous that someone is trying to get you to “rate your pain” when you’re obviously dying. How fuckin rude. Actually, you feel like you’re in enough pain that maybe somebody should just go ahead and kill you. Yep. That kind of pain.

When a mother fucker aka “a kidney stone” decides to head to the next rest stop, aka your bladder, you can’t deep breathe. You can’t visualize anything except a cruel heartless person repeatedly stabbing you with his shady pocket knife. Over and over in your left lower back region. And he just won’t stop. There is no negotiating even though you have told him that you don’t carry cash and your bank account has “insufficient funds.” Why would you tell him that anyways? That’s too much information for a robber. This cruel asshole will not take “no” for an answer. He is just going to keep on stabbing you. Don’t try to lay down. Get back up. Nope. Hunch over. Yell “FUCK!” Get in some weird unspoken, awkward yoga pose. Just try your hardest to NOT feel like you’re dying. Even though you know you are. Good thing you got that life insurance. Did you mail the check yet?

Drink water. Throw up. Cuss. Pray and promise God you will do anything if he will just make the son-of-a-bitch arrest the mother fucker. What? It’s confusing when you don’t use medical terminology. I am going to let you know right now this is how Web MD describes kidney stone pain:

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“Waves of sharp pain…” Really, Web MD? I like waves. You know, those sparkling sun-kissed ocean waves. They’re relaxing and beautiful. How dare you describe kidney stone pain as peaceful like the ocean. Who are you, Web MD? Do you think it’s funny to lie to millions of people. Oh, it’s not lying when you water-down or sugar coat the truth? Don’t send me a bill for this visit because my insurance will not pay for your lies.

Don’t you know that you’re never supposed to consult the internet to learn about a medical diagnosis. Come on.

My description is so much more realistic. If you or someone you know ever “passes” a kidney stone, I’m so freakin sorry. Having a baby is way more fun. And so is having surgery.  Just tell yourself or your friend in the most sincere and genuine way, maybe with a tear drop in your eye,”Congratulations. I heard you had a mother fucker. Holy shit. I am so sorry. I’m glad you’re still with us.” Now make sure you get that life insurance check mailed, ok? To my knowledge, Hallmark hasn’t come out with this sort of medically inappropriate line of cards. Yet. We can all hope for the future of expensive thoughtful cards, right?

Heart Holes

~ Amelia ~ 1 Comment

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It’s impossible for me to suppress feelings of grief or loss. Even if the losses seem irrational, unreal or invisible. I don’t believe that it’s a healthy habit to smooth over or pretend hurt doesn’t exist. Can you grieve the loss of something that you crave so desperately but that you’ve never actually had?

Well I do and I’m certain that I’m not the only one. It can be a complicated and isolating type of grief. Most people typically don’t dive head first into the deep end of life’s sad realities. When your grandmother dies, and you’re grieving, it’s perfectly acceptable and understood that those around you will outwardly express their sympathy with hugs, cards, tears, and conversations. However, when some life event or experience sparks the brush pile of your invisible loss, the hidden flames of sadness often have the fuel to grow pretty quickly.

Only those who know you in the most vulnerable way may ever recognize the flames. Perhaps nobody will ever know.

Sometimes specific settings or conversations or experiences can shake you up. It can feel like you’re driving over a giant pot hole. You can prepare yourself beforehand, but you know that it will inevitably jar your spirit and temporarily hurt. Always. Just like a familiar pothole on that street that you have to drive through. The feeling of bracing yourself for the broken road doesn’t go away. Maybe ever.

In humans, like me, it feels more like a heart hole.

On some bright and sunny days, you can maybe handle one of the heart holes. You might swerve around it to avoid it. Maybe leave the room at the perfect time or don’t ever walk into the room where that routine casual conversation is not so casual for you. Because it hurts. Because you have an open wound that’s tender, and perhaps it won’t ever heal. You can try and plug up heart holes, but it’s only a temporary fix. They always come back.

Grief hurts. Physically. Emotionally. Spiritually. Hurt slowly burns. Then, it can leave your eyes dry and your heart and body all sore and achey. When my husband opens his arms and holds me and let’s me cry the tears, my real tears, mean a loss is a loss. His presence tells me that it’s okay to feel the invisible weight of hidden or invisible losses. I don’t have to justify them to anyone to know that my pain is real. Validated. Visible. Even if I have never received sympathy cards. And most likely, never will.

I don’t want to take my pain or losses out on anybody else. That’s one of the reasons I write and how I experience the unfathomable joy of this world along with the deep pains too.

I can sit with my son as he draws a “ginormous smile” on himself in his picture. The green marker smile goes off of his stick boy drawing and around and around the scene because “he’s that happy.” And so am I sitting next to him. Then as suddenly as a car shifts into second gear, I can drop him off at preschool and then switch gears and cry until I reach my husband’s embrace. There’s something so healing in these kind of tears. I can cry some more because he understands my grief. Because of how deeply he cares for me, my struggles become his struggles too. He rides over the broken parts of the road, sitting right next to me. And this makes me cry all over again. Grateful tears for his endless love for me.

I am aware that I am not the only one who grieves the losses that nobody ever saw. I know this. So, I share to let another know that it’s okay to hurt. And it’s okay to cry. And it’s okay to be upset and grateful and joyful. We are beautiful, complicated beings. Why would our emotions and feelings not be overlapping, entertwining, connecting and complicated in the same way as our physical bodies?

Ready or not, here I come. It’s a bit like hide and seek grief. You may unexpectedly stumble upon one of your losses hidden away in the closet or the cabinet up high. Or perhaps somebody else will unintentionally reveal one of your hopes, dreams unfulfilled or losses. I hope you will give yourself permission to grieve. And I hope you will let another share the extraordinarily heavy weight of your invisible loss so that it may become more bearable.

Freed

~ Amelia ~ 2 Comments

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It’s a bit of a frustrating process to get life insurance when you’ve got medical issues. Not huge ones, but chronic ones. It can feel like complete crap calling doctors offices to get diagnosis dates and other details that an underwriter needs for research to determine what an appropriate annual rate will be for someone with your history. Fixating on all of your body’s problems can be a real buzz kill. I understand though. I’m a hot mess on paper.  It’s a risk taking on someone like me. My husband says that my medical history can make me look pretty bad but in person, He’s like “Damn, girl.” I paraphrased him.

I don’t think the average person would listen to my medical history and current conditions and feel like I have been “healed.”

Here it goes….a clep blog version.

I had a benign hip tumor surgically removed in high school. Two reconstructive ACL surgeries in college. Total colectomy with ileo-anal pouch anastomosis the summer following my freshman year in college. Countless failed surgeries for fistula repairs. Guinea pig much? Three different states by three separate surgeons following college. The “best surgeons” in the field. Two of which did unethical things to my body, without my consent.

I have a micro tumor on my pituitary gland that can cause some real problems, despite its itty bitty millimeter size. I’ve got junked-up, scarred lungs that struggle to get mucous out on their own. There’s a disease for that: bronchiectasis. A tricky one to spell. My lungs need a little love from albuterol and the acapella valve from time to time. And no, it doesn’t sound like sweet non-instrumental music. I will take instruments, please, any day of the week. It sounds more like Darth Vader’s wife.

I don’t have my large intestine anymore. Yes, you can live without one. Unlike a lizard’s tail, mine has not magically grown back after being surgically removed for being straight-up diseased. Dead. Unresponsive to meds, beyond resuscitation. I do miss it from time to time, when I’m going to the bathroom ten or so times a day. Especially in the middle of the night during one of those rare good dreams that you want to hop back into. But ughhh, you can’t.

I guess, selfishly, I have hard time spiritually processing things when I hear of people being miraculously or momentarily “healed” or cured. In God’s name. I guess I get a bit pissy and confused because I’ve said about a million prayers. Not just for me. And I’m pretty sure those who love me have said more. It makes me feel pretty damn unimportant. And I think, “why not me?” Or why not the starving kids, abused kids or women being raped? Victims of brutal genocide. Especially the littlest ones. Cancer patients. Or the millions of other afflictions that just flat-out suck much more than mine.

Well, let’s analyze it. I’ve done my fair share of bad stuff. Rebellious stuff. Ungodly stuff. But still, I’ve never wavered in my faith in God. Or his love for me. I love Jesus. I get Him. He gets me. He knows my heart the best. He understands me. He searches me out and always finds me. Wherever I am, be it on the bathroom floor or next to the kitchen sink. In my closet. In a hospital room. In my car. He’s kind of like a crazy never ending Dr. Seuss book. I can’t escape him. He throws a crud-ton of grace down on me. Constantly. And forgives me all the time. I believe this.

I think he welcomes my doubts and fears and all of my hurts too. My humanities. He recognizes the many different kinds of tears that trickle, stream, sneak and flood down my face. Most importantly, he holds me accountable. Picks me up off of the bathroom floor, most times, in the form of my husband. He shows me a glimpse of my potential. He expects me to do more, persevere and grow. Love harder, and never settle for convenience, complacency or boredom. He instills an infinite supply of hope inside my heart. My mind. And my soul.

I’ve actually got an ongoing list of questions for God to answer. Not that God needs my list. But I do. One day, I hope he will answer all of my random ones, like “what’s up with moths eating all of our sweaters”, or “Why I am I wide awake after having sex but my husband falls into a coma-like sleep state?” There are the deeper, more complicated questions too, like “why do kids have to die? Ever.” Or “why did soooooo many of my surgeries fail?”

I often start deep sea thinking and praying like I do. When I’m vacuuming. Or driving. Or in the shower. I’m typically trying to work things out with God. Let it all out. Like a true intro-extrovert. Or maybe it’s God trying to soften my heart and strengthen my faith, despite human beings’ attempts to destroy it. I’m attempting to move outside of the anger. The sadness or resentment. And the unfairness and the hurt. Somehow, I’ve got to see through it, past it, over it or under it. But it’s a stumbling feeling. Awkward like my feet have fallen asleep. I can’t move. I’ve got to shake them out, wake them up, even perhaps crawl on to reach the hope.

The good.

The beautiful.

It’s there. I know it. It can be sneaky. Even hidden. But it’s always truly present. And although I may not be Steve Martin in “Leap of Faith” kind of healed, I think I’ve been freed of a lot of suffocating, life-stealing things.

I’ve been freed from the illusion of perfection. Nothing and nobody is perfect. My body will never be perfect. Ever. In a ton of ways. I will always have big feet, a big nose, freckles, and scars. A lot of scars. And if I want to be naked, totally naked, I will always look down and see the bright red flesh, the part of my small intestine that’s been pulled from the inside out of my lower abdomen. To save my life. It won’t go away. Ever. No matter how many prayers I could say for the regeneration of my colon, it’s not happening. Save your breath.

My diseased body will always present obstacles and physical limits. I’ve come to terms with this over the years. It’s hard to be different, but I am. I think we all are. I have had to worry about deep things most women don’t have to. And perhaps may never ever think about, especially not on a daily basis.

It’s not that I believe that God doesn’t possess the power to do mind blowing miraculous things. He could regenerate a healthy colon for me if he wanted to. Or heal my scarred lungs. But there’s bigger more important lessons I’ve learned through the pain, frustration, disappointments and failures. I believe he’s surrounded me with people who tell me they love me, despite my missing parts. So, I pray instead for God to change my thinking, change my eyes to more readily see those around me and make me proud of who I am and all that I’ve overcome. Through Him. Proud, not ashamed. I pray that God uses me and my experiences to encourage others in an honest, transparent and freeing way. And guess what? Miraculously, these prayers have been answered. Time and time again.

I’ve been truly honored and humbled and a little overwhelmed by the love. I’ve been grateful that friends will openly share their struggles and experiences with me too. The other day, one of my friends confided in me telling me that she pooped her pants In the night and I told her “That’s not a big deal. So what? You know how many times and places I’ve shit my pants?” She told me that she knew I would be a safe person to tell, that I wouldn’t judge her. (I would only blog about her. With her permission.)

It feels a lot better knowing that it’s ok to shit your pants. That somebody else has done it too, you know? I’m truly grateful for all of the hard things that I’ve felt in my life(that’s what she said…I couldn’t help it) They’ve given me the ability to truly feel and understand a little bit more of what others may be going through. Pain is pain. Physical, mental or emotional. Isolation is isolation. And loneliness is loneliness. Don’t even get me started on shame.

God has strangely and miraculously shown me and taught me so many more meaningful lessons through the awful and painful parts of my life than I’ve ever learned through the blue skies and rainbows. I feel like through all of the hard times, I’ve been humbled, dependent, and gratefully aware of what’s most important in life. I get this awesome privilege of experiencing the beautiful parts at an insanely heightened level. I constantly encounter these most inspiring, sacrificing, loving, and genuine people. The ones that doubt and fear, laugh and love radically, outside the norm. I get to meet people that don’t shy away from the hard places, the ones who put themselves out there knowing they will be affected, mocked, bruised, and knocked down a little or a lot by life’s hurts. And they will be changed. Transformed in a caterpillar to a butterfly kind of way. Once you grow wings, you don’t want to go back to squirming around on a tree branch.

I’ve been picked up by these best kinds of people time and time again. They matter the most. And they are who I want my kids to be like when they grow up.

They may or may not know it, but they are real-life people living out the type of love Jesus talked about. The sacrificial. Seemingly crazy. Hard. Relentless. Inconvenient. Inclusive. Sacred. Beautiful love. The kind of love that never, ever fails. His love never fails.

If I have had to experience hurt and pain to be hyper sensitive to the beauty and love that exist despite it, I will get up and experience it all over again. That’s how I’ve been healed.

I’ve been released. I’ve been freed.

You don’t need to ever pity me. I’ve come a long way in my journey. And you don’t need to feel sorry for me either, okay? Unless you feel sorry for butterflies too.

Warm Blankets

~ Amelia ~ 2 Comments

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I slowly woke up and got my boys ready for school. After breakfast, I stood outside watching them show me tricks on their new swing. I needed to quickly catch up for lost weekend time before I had to load them into the van.

It didn’t matter how many layers of clothes I had put on to try and block out the wind, none of them felt like enough. Not today. The cold winds blew right through me. I wrapped my arms tightly around my waist to try and keep myself warm. The thing is when I’m sensitive from the inside out, I don’t think it’s possible to fully insulate myself from feeling the hurt, the pain, the anger, and inevitably, the sadness. It’s just not fair. So many things that I saw on Sunday. It was too much brokenness. Too much wrong, not enough right. Unfortunate circumstances tangled up with loss. After loss. The good seemed so dim beneath the weight of the pure evil. The hope was drowning and there was nobody there to save it.

Everybody was too busy.

I don’t think I will ever forget the sound of the door to the blanket warmer opening and shutting, when I grab a few blankets for a patient. I think every one of us has wanted to stop at some point and curl up inside of there. Disappear and take a short nap in the middle of one of the shifts that feel more like twenty four hours. It’s sometimes the least and the most that you can do for a patient and family, go snag them a warm blanket. Or a cup of water. Because you can’t do anything about why they are there or how long they will wait, especially when there are real emergencies happening. Everywhere. You can’t tell them that it’s far better to wait impatiently alone than to have a swarm of doctors and nurses quickly take over your room. You can’t tell them that they should be grateful to leave, eventually, with their alive child.

This afternoon, at home, I grabbed a load of warm laundry from the dryer and remembered bits and pieces of the previous long work days. It all feels like a blur sometimes. The giggles. The tears. The loud cries. Infant cries. Toddler cries. School age cries. The silence before a procedure. The begging. The pleading. The lullaby music. The smells of different families, cleaning wipes, popcorn. The sadness or apathy lurking behind certain doors or curtains. The unknowns. All of the brief hallway conversations with co-workers. It all just makes me want to lay my tired body down. Then, I want someone to knock on my door and tuck me under a warm blanket so I will be temporarily sheltered from the harsh winds of sickness, the unknowns, evil, sadness, and pain.

Yet, unfortunately, a warm blanket will not make my work thoughts disappear.

After crazy weekends, there are far too many of my thoughts and feelings seemingly waiting loudly in line, bumping into one another, sharing with each other, asking to be heard, understood, or felt. All in my mind. When it gets too crowded, tears will be shed. My tears. Because I don’t know all the answers. I can’t begin to understand or solve the problems of our broken society. Tiny caskets. Shelters full. Psych facilities full. Hospitals full. It’s overwhelming. My heart can’t begin to fathom the atrocities that certain children see, hear, feel, or live through because of another human being’s ignorance, negligence, mistreatment, or selfishness. The one human being that should love and protect them the most.

I sometimes wonder what may trigger a child or family member to remember the painful moments, hours, or days spent in the hospital. Will a certain toy or TV show or sound or smell remind them of the painful times? Will it be something I said or did? Should I have them watch their favorite movie or not? I still can’t listen to certain songs or smell certain scents without being immediately taken back to specific hospital rooms, or the operating room, or the emergency department unexpectedly recalling my own medical experiences.

But somehow, despite all of my surgeries and recoveries, the warm blankets still always make me feel a little safer, a bit more comforted, and pretty warm too. There aren’t too many perks to being in the hospital. Loads of uncertainty, constant beeping, weird smells, awkward hospital gowns, and so on and so forth.

The warm blankets help.

They matter in a simple yet important way. Similar to a lot of the kind and thoughtful gestures in life, the times we go a bit out of our way to do some small act for another. Perhaps for someone we love or a complete stranger. I’m pretty sure we all possess the power to grab someone a warm blanket, wherever we are in life and whatever we’re doing. Or maybe we are the ones that need to graciously accept a warm blanket from time to time. Either way, the warmth wears off on both the giver and the receiver.

My Brush Pile

~ Amelia ~ Leave a comment

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I semi-fled. Or retreated. Up the staircase. I plopped myself down with my back against the door. I stared out the window at a gigantic swaying tree. I took a few deep breaths. And I noticed my tiny closet window is the same shape as a stop sign. So, I stopped my overthinking. I stalled. Nobody was coming so I just didn’t move.

After I spent some time praying and looking out the window in my closet, I concluded that ultimately, I have to give somebody permission to hurt me. With their words or thoughts. I give them access to my brush pile. And if the conditions are right, they light me up and ignite a fire that has the potential to grow. And grow. Inside of my head. Trickling down to my heart. You see, it’s me, most of the time that gathers the fuel for the fire. I make a pile and stack it up. Nice and neat. The little insecure thoughts, the fallen twigs and sticks. The bigger, and much heavier branches also get thrown into my brush pile. They’re my doubts and fears. The fake truths. The lies I tell myself. My worries. All of the unknowns. In hindsight, it’s quite unfair to blame anybody but myself when my fire gets lit. Because I supplied the fuel. That was all on me. How could a person that loves me and that I love, too, know how big my brush pile had grown? If I didn’t tell them.

It’s not their fault.

Because it doesn’t matter how well you know a person or even how much you love them, it can be a tricky business knowing someone’s exact thoughts or fragile state at an exact moment in time. Or knowing their exact emotional or literal response to one of your thoughts. Ahhhh. Mind reading. If you could have any super power, would you choose the ability to fly or read someone’s thoughts? Could you help a loved one or even a complete stranger feel less insecure, perhaps more important if you knew exactly what she was thinking at a specific moment? Would we treat each other more gently and compassionately if we could slip past their outer appearance and sneak into their head to understand what they actually were thinking? What if we could know exactly how they felt? For better or worse.

I realize that I should have never been gathering sticks, stacking up all these bits of fuel. But I do. Like most people. And it’s extremely hard to let them go sometimes. We can oftentimes dodge or escape other people’s opinions or thoughts, but sometimes we are not as skilled in escaping our own negative thoughts.

We need help. With ourselves and each other. We all need the grace of God acting as the hose or the fire extinguisher, and we all need the type of person willing to stand there next to the flames helping us out. Or else we may continue to gather fuel, purposely or unintentionally causing our brush pile to grow. And grow. We may even go looking to pick a fight with someone with a torch who we know will happily light our fire. And not in the “C’mon baby, Light my Fire” Doors kind of way. In the self-defeating, humiliating sort of way.

It didn’t take a blow torch for me today. Just a few matches. My brush pile burned down. Which helped me learn that I need to stop gathering sticks, branches, etc. I need to be more kind and forgiving to myself. Maybe you do too.