Shattered. The healing place.

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I will meet you at the place. The place where it hurts.

I will meet you in your pain. I will hold you through your grief.

I will meet you in the place where your dreams shattered off the wall.

I will join you in your tears. I will drop my hand gently on your back when you’re sobbing. When you’re curled up into a ball with your back turned away from the world.

I get it. I understand. The rest of the world should be crying too.

I will journey to that place with you.

The hurting place.

That place where I have been before.

I know the way.

I don’t need a map.

I see you. Your eyes. I hear you. The words you don’t have to say. I feel you. Your pain. The after shock.

I recognize your broken eyes. I can sense your empty, crowded brain.

I can help you take a breath.

I can tightly hold your hand.

I can hug your shaking body.

I can sit up against the wall with you.

If you only will let me in.

I’ve been to the hurting place many times before.

I know it can be an awful, lonely and scary place especially if no one ever comes to knock on the door.

Let me help you. Hold you. Hear you.

Let me in.

When you’re ready, I will lift you up. We can take one step and then another. Or we can stop and take a break.

I will be with you. You don’t have to look up. Yet. You will know that I’m there. We can journey to the healing place.

I’ve been there before too.

I will show you the different paths that I have tried.

Maybe you will see a different way. We can journey together.

Next to each other.

We will make it to the healing place.

Undressed Emotions

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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.

 

RIP “Rocky” the dead sidewalk squirrel

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Sometimes I write deep and plain sad shit. I know it. Whew. Then I feel like I need to write something funny. I actually have a blank blog post titled “Something Funny.” Tonight, I thought I could either do a birth announcement for one of my kidney stones or write about a dead sidewalk squirrel. Since I didn’t want Jesus to feel like my kidney stone was anywhere near as important as his upcoming birthday, and also Shutterfly is not running any specials on kidney stone birth announcements, I’ve decided to go with the dead rodent piece.

If I’m honest, I will admit to having had a bit of remorse for weeks about not writing an obituary and failing to have a ceremony for this unnamed neighborhood squirrel. If it makes me seem less cruel, I have been more kind lately to squirrels stealing our bird feed. I look at them with love instead of disgust. I feel like I want them to know I didn’t kill Rocky. I feel like if they saw me shoving Rocky into that Saltines box, they may have gotten the wrong idea about me. By the way, I just named him “Rocky” for this piece of writing. Prior to writing this story, based on a true story, I referred to him or her as “the dead squirrel in the Saltines box.”

I picture Rocky as a happy, young and carefree squirrel. Although I never knew him in this way. I only knew him as a bit creepy and a lot dead but I would like to imagine him alive for a few paragraphs.

Oh, Rocky. I can just see him being a big show-off climbing to the highest branches of gigantic trees, shouting,

“Hey! Look at me!” as he jumped from tree branch to tree branch. Rocky probably loved hiding his nuts in all kinds of crazy places. His acorns. Sheesh. Come on. Maybe the other squirrels resented him or absolutely adored him. Perhaps a bit of both.

The one thing that I think I know is that Rocky had one of those crazy awesome imaginations. Well, let’s face it, his creativity basically stemmed from the many hours he spent watching TV. He loved to sneak up to houses and peek in their windows. He pretended like he was looking for his nuts but he wasn’t. He always knew where his nuts were. Rocky absolutely loved watching TV. You would think Rocky liked funny shows like “Modern Family” or “Seinfeld” but he really gravatated towards the laughing, then tear jerking dramas. He liked to laugh, but he also loved a good cry. When “Parenthood” ended, Rocky didn’t come out of his tree for a few days. He was starting to get into “This is Us” before he died. Which is pretty sad in itself.

The night before he died, Rocky layed down on the highest branch of his favorite old Ash tree. Rocky always sprawled out on his belly and put his head in his tiny paws like he was laying on the floor watching TV. Every night to go to sleep, he would pretend he was watching a mini television set up in his tree and then he would doze off dreaming about where he hid his nuts and his favorite TV shows. Usually he would wake up in the morning when he heard the loud sound of the school bus’s engine flying down the hill. He thought the bus should probably slow down. Sometimes he even yelled, “HEY! Slow down, school bus!”

Something strange happened on the night Rocky died. The moon hit his eye like a big pizza pie. It’s like he had eaten a bad nut or something was in the air. He slept so hard that he fell right out of the tree, landing smack dab onto the ground beneath the tree, next to the sidewalk.

Tragically, he died on impact. (Sorry. The title warned you)

He rested on the cold ground. Dead but looking rather alive. Eerily alive.

My boys and I walk to school. Most times, we run to school. Because, well, we are always running late. One of my sons was running out in front. My other son and I chased him down the hill.

All of the sudden, the son in front stopped.

“MOM! Look. A squirrel.” (It was Rocky)

We made it to Rocky’s tree and looked down.

“Oh, no. He’s not moving. I think he’s dead.” I said. Although, he did look like he was happily watching cartoons on his belly. Or tear-jerking family dramas.

“That’s so sad,” he said.

“It is really sad. Poor squirrel. We will have to bury him.” Why did I say that, I immediately thought. We have a guinea pig cemetary in our backyard. What’s another rodent tombstone, right?

“Come on, guys, we gotta get to school!” I said.

I dropped my boys off at school, but I dreaded walking back up the hill. I hoped that maybe Rocky was a sick jokester and wanted to scare a lot of kids on their walks to school. It turns out he wasn’t or maybe he was. Not that day. He was dead.

I thought, “Surely the people who live in the house by Rocky’s tree will properly remove him and bury him or cremate him. Or maybe Viking funeral him.”

One time, I almost removed a dead opossum from the sidewalk far away from our house because it looked awfully sad and made my kids pretty sad, too. It’s not that I want to quickly remove or ignore or not grieve dead animals on sidewalks but it seems wrong walking past them time and time again. The problem is I scream a lot or squeal and my muscles tighten up and I freak myself out. I feel dead animals move or I trick myself into feeling dead animals move. Or strangely, I’m afraid other animals may be watching me remove the dead animal and they may think I killed the animal.

I didn’t want to have to remove Rocky from the sidewalk and put him into a Saltines box but my conscience told me it was the right thing to do.

Long story short, I got the courage up to get him into the Saltines box with some sticks and a bag and I threw some acorns on top of him. I’m not sure if that’s cruel or not. I felt awful putting him in our trash can but the ground was frozen. I didn’t know if guinea pigs and squirrels got along.

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As it turns out that night, after removing Rocky, I had to do a bowel prep. I had to drink Go Lytely which some real sarcastic asshole named. It does not make you go lightly, and it tastes like an awful combination between another person’s sweat and straight-up-make-you-wanna vomit ingredient. I encouraged myself to keep drinking by reminding myself that I do hard things. Like remove dead squirrels from the sidewalk.

Did the nurse need to tell me that I didn’t need to do the bowel prep the next day? Probably not. Did the spirit of Rocky and Mother Teresa help me get the prep down? Most likely, yes.

RIP “Rocky” the dead sidewalk squirrel. I’m really sorry about your fall. But congrats on living life to the fullest.

P.S. A deeper life lesson from Rocky: You must first acknowledge the dead squirrel on the sidewalk. It’s really there. It exists. Quit walking past it. Or ignoring it. Breathe deeply, now deal with it. Build up the courage up to do something about it.

P.S.S. Did you know that they have black squirrels in Canada? I was a but obsessed with getting some video footage. I will try to upload since you probably care.

Nobody Understands Land

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

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

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?

My Write-In Vote

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I’ve been writing in my head all week long. I thought I would actually put the words down about this once to hopefully get some of it out of my system. I have people that I love dearly that have voted on both sides of this election. Personally, I could not vote for Trump or Clinton. I understand why some people may say that to write-in a woman who you know is not running for president seems like a cop-out, but I am the only one who lives with my conscience and constant thoughts, feelings and emotions twenty four hours a day.

I chose to write-in a woman that I trusted and that has enormous loads of integrity. I typed in the name of a woman I believed in, knowing she would not win the presidency. I voted for local state representatives and senate. Then, I left the polls after a kind man made my day by asking if it was my first time to vote. Nope. I left without the looming feeling of having made the wrong decision with the minimal knowledge I have.

I understand some of the bigger issues and reasons why people I love voted for Trump, despite the ugly sides he flaunted throughout the election. But, I couldn’t vote for him. For numerous personal reasons. I have a hard time looking at him without getting disgusted. I have a disability, really several. I am sure Trump would make fun of someone like me, someone with a disease that makes them different. Someone with an ileostomy. I am also a woman. In my life, I have had men whistle, touch me without permission or stare at me like I am a piece of meat or an object for their consumption. It’s sickening and demoralizing. It’s one of the worst feelings. The fact that a man running for president would not only think, but say and act on such vile thoughts about women disgusts me and infuriates me to a blood-boiling, heart racing level. I also love deeply my many friends who are gay, Muslim, Mexican, immigrants, etc. I love the strangers I have met that could be classified into one of these groups. I hurt for them knowing the pain Trump has caused, and may continue to cause. It’s absolutely mind-baffling in this day and age that Trump would promote fear, hate and a messed-up, racist, and exclusive America.

I understand why people, especially women, voted for Clinton. But I also couldn’t vote for her. She has extremely, ridiculously large amounts of experience. If the two president elects were doctors, I would go to her a million times over Trump. Or if they were painters, plumbers, or any other profession where you seek out a person with book smarts, street smarts and an overall understanding of the profession, she would be my choice. I have a hard time getting over the original Clinton presidency. I have a difficult time with the fact that Hillary Clinton stayed with Bill Clinton. Why would a strong woman not leave a man that disgraced and dishonored her and had public affairs with other women? In my mind, if a woman can fake a marriage, what else is she capable of faking? I can’t get over that, despite her experience. I know some may think that’s judgemental and none of my business. But it becomes a bit of my business when I have to choose who I can trust or who I can vote for for president.*

Also, I realize that each candidate is only human, far from perfect. I am thankful we have people who are willing to put themselves out there, and take all the risks and negativity that accompany running for public office. I’m not Pollyanna. I realize that the media and politics, in general, tend to be corrupt and full of cover-ups, misinformation, lies and tons of money.

I’m pretty certain that both of the president elects are millionaires or billionaires. I cannot relate to them. They most likely would scoff at the Costco dinner I might throw together for them if they came over, especially if I burned it. How awful would it be if one of them sat in our wobbly broken chair and if the dog jumped on their lap during dinner. Or what if one of the boys hit them with a ball or dart? Would secret service lose it? I typically am not inspired by many millionaires or billionaires, unless I have no clue that they are wealthy. Instead, I look up to teachers, doctors, nurses, single moms, social workers, construction workers, nuns, monks, mechanics, police officers, fire fighters, EMT workers and so many other professions that bust their tired asses to serve, protect and care for fellow humans. I did not go into the field of Child Life to make crazy amounts of money. I jumped into the hospital setting to help others going through crappy times. If helping others meant cleaning toys or vomit or blowing bubbles or playing Uno or hugging a parent or comforting a crying baby or encouraging a coworker, I would do it. These things made me feel valued, like a million bucks. Never my paycheck.

This brings me to my most important point. My kids learn how to love from those they’re immediately surrounded by. Not rock stars or politicians. My husband and I. Our families. Their teachers, even the grocery store cashier, people at church, neighbors, and friends. My boys naturally love innocently, unconditionally and beautifully. They love people of every skin color, heterosexuals and gay people, Hindu people and atheist people and they sure as hell love their mama who has disabilities.

I do not worry or fear for my children learning hate, exclusion, racism or intolerance from Trump. I fear they will learn hate or intolerance from classmates, teachers or others who directly influence their day to day lives. It’s our job as parents, teachers, people in the grocery store or traffic jams to teach love, patience, kindness, and acceptance of others, no matter what they look like. I am much more qualified that Trump or Clinton to teach my children how to treat others. I believe you are too.

So let’s love each other in the valleys and trenches and up in the treehouses and on the playgrounds. Don’t forget the offices, classrooms, hospitals, court rooms, mountains, desserts, beaches, classrooms and most importantly, our homes. Every day. Nonstop. All the time. No matter who the president is.

And here’s a funny video, just because.