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.
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.
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.
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.
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.
You are not alone. You never have been. You never will be.
Somebody always understands.
My 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.
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:
“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?
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.