The last few weeks have brought on a mix of weird feelings.
Feelings that I’m not quite sure how to decipher… and sometimes I don’t want to even try. But each time I put pen to paper I find my hand furiously scribbling away, filling up page after page in my journal. It is a free therapy session between Dr. God and me, the only One who truly understands every crevice of my heart.
Three weeks ago I had a medical study/test that involved having an NG tube for 24 hours but luckily I got to spend the majority of that time in the comfort of my home. I expected to be uncomfortable, to have an irritated throat, a constant urge to gag, and more fatigue. I didn’t expect to be so emotionally affected or the rush of traumatic memories to flood my mind.
The experience took me back into a dark place. I remembered darker, unbearably painful days filled with 24/7 feeding tubes, lots of hospitalizations, painful procedures, constant disappointments, going without any food by mouth for 300 days, MAJOR surgeries, and impossible roads to recovery. Everything came back.
If you’re reading this blog, chances are you know that I’m by no means out of the woods. I’m sick. I’m suffering. But much less and differently than I was in the first two years of this battle. Many aspects of life are much much better. My quality of life without a diseased pancreas killing my body is 20 times improved from my life with it. And with every improvement comes an uninvited guest… GUILT.
Guilt that I am doing better yet many sick patients in this world are not. Even though I am sick & still sitting on the sidelines, I feel guilty that I want MORE.The old, sicker version of me would give anything to be where I am now… so am I selfish for not being satisfied? Am I selfish for wanting to be better? For wanting more out of this life than what I’m currently getting?
My fear is sounding, acting, or having an ungrateful heart. I always always want to be thankful for wherever I am in life. That’s the whole reason I created #ThoughtofThanks. So when I remember days that were literally 100X worse than they are now, I feel guilty for feeling like things are still hard.
But, gosh, they are still hard.
There really is a lot that I CAN/AM doing now; achievements that I feel super proud & excited about.
- Driving independently in our little area of town
- Making short trips into the store alone (not frequently but there are days I can!)
- Living with my husband, not parents 🙂
- Team-working with my husband to care for our very own apartment
- Cooking dinner for my husband & concocting creations for myself
- Spending time around/with people outside of my close family
- Actually being able to consume ANYTHING by mouth without relying on a feeding tube.
Don’t get me wrong, I am so glad to be eating. Every bite is a gift… I have lived a life that did not include any eating and it is absolutely an awful way to have to live. But I yearn, desire, long for eating to become better. Even just a bit. I get asked all the time, “So how’s your eating? You’ve gained weight so I guess it’s going great. Do you have any limitations?”
Not because the asker has done anything wrong… eye roll because the things that people assume could not be farther from the truth. And I want so desperately for my answer to be different. I want to say, “I have made so much progress and I can at least enjoy/digest/hold down a piece of skinless chicken or a salad or an apple or a piece of toast or a bowl of oatmeal.”
But I’m still not there, almost two years into the re-eating process. My eating still consists of mostly pureed, liquid, or SUPER mushy foods. 90% of what I consume is made with my blender. And I know what you’re thinking, “Oh everyone loves a good protein shake, they are so healthy and satiating.” Yes, yes they are. IF you are someone who can tolerate a thick smoothie/shake with added protein and get through more than 1/4-1/2 as a MEAL. I’m not living off protein shakes. I do not even drink them.
Pureed veggie soups made from homemade broth + roasted/steamed vegetables + seasonings are my lifeline. Along with Clear broths/soup & bone broth (which I recently started making as a new way to get protein.) Mashed avocado, mashed banana, mushy tofu, vegetables that have been cooked down to near mush. Nut butter/hummus to try & fill my body with any protein & a few bites of solid each day which is typically my soft veggies or some type of veggie/tortilla chip for crunch. These are essentially my only options with a few exceptions. Everything in very small portions, spaced out several hours (there is no snacking), & by no means do I get this variety in my day to day diet.
Some days are better than others though it is ALWAYS a battle to feed this body. Pain, nausea, dizziness, headache, vomiting, hiccups, burping up food then swallowing it back down are a constant. I’m battling against delayed digestion, gastroparesis, bile reflux, sluggish bowels, & figuring out the appropriate dose of enzymes so that my body has a chance at absorbing & using this fuel.
Food is rarely enjoyable though I do my best to tell myself that it is.
It is truly a full time job to be sick but what I’ve found is that feeding myself is like adding an insane amount of overtime into the mix. Nearly everything I consume are recipes/concoctions that I have put all my possible energy into figuring out & creating. I have to use the purest ingredients full of the nutrients, vitamins, minerals I am needing most & do my best to turn them into food that can aid my healing but also taste good. I have to make my food myself because each & every piece of the puzzle needs to be monitored & also because only I know what works best for me & I feel nervous when others cook for me (minus a few exceptions). I usually make all of my food on one day, fill up some mason jars with some different options and I’m set for anywhere from 7-10 days.
And I must do the best I can to keep myself on a schedule or my pain & symptoms will only worsen. Some days when I wake up my stomach is glaringly empty, my body is begging for fuel but I know that mornings are not a time that I can feed if I want to function for the rest of the day. If I haven’t fasted for a minimum of 14 hours before eating on a new day, I am in for sheer misery.
Factor in the need to monitor & regulate blood sugar (praise God I am miraculously insulin free but I deal with sudden lows) this throws in more challenges when it comes to feeding. And, and, and… there is so much more I could tell you, but that’s not the point of this message.
So, with all of this considered…why am I feeling guilty for being at this point in my journey? Why am I feeling guilty for celebrating every single CAN that the Lord has blessed me with? More importantly, why as I feeling guilty for being HUMAN & hating all the CANT’S?
Why do I feel as though it’s wrong to want more? Why should I feel guilty about wanting less pain? Or wanting to hold a job or go back to school? Or wanting to feel ALIVE & active & able to do fun/normal things with my husband? Why is my mind telling me it’s selfish to have a longing to eat a salad, raw vegetables, whole fruit, an egg, a piece of chicken/fish/meat, or anything that I don’t have to blend?
Why am I allowing the enemy to somehow convince me that it’s wrong to desire these good things?
Why is is that Satan is so easily able to make us all feel unworthy of a full life?
When you are told “No” for an extended period of time (whether it be in your health, relationships, career, schooling, athletic endeavors, dream chasing) you start to believe that these “failures” are a direct reflection of you. That whatever isn’t working in your life is somehow your fault. You begin to question your worth…”I guess I’m unworthy of eating solid food.” “I guess I’m unworthy of being on the soccer team.” “I guess I’m unworthy of love.”
We begin to punish ourselves over that which is out of our control. At least I do.
If you’re like me, you may even question your value, your purpose, what others see in you…. what God sees in you.
God created us for MORE. He did not masterfully mold us into being to endure a life of mere suffering, anguish, & brokenness. Our own weakness & sin brought that on.
We are not entitled nor are we deserving of His goodness & grace, yet we are freely given so much that we are drowning in Almighty love.
Listen to me friends, God looks on us & SMILES. Like any good Father He wants the very best for us. He wants us to prosper in this life. He is the best Dad.
This world is broken.
We ALL deal with struggles both minor & major of various kinds. And the inevitable, tragic circumstances that blow through our lives like a tornado are not always our fault. I’ve said this before..things happen & there may not be anyone to blame. No scapegoats. Don’t turn yourself into one (saying this mainly for my own ears!) when Satan viciously attacks. Don’t listen to his pathetic pleas which say, “You aren’t worthy. You will never be enough. This is all your fault. You deserve to suffer.”
Listen to the words of our King which proclaim:
- You are fearfully and wonderfully made.
- You are beautiful, there is no flaw in you darling.
- You were created in my image.
- You’re MINE.
- I love you, you are precious in my sight.
- I made you to thrive.
God loves you enough to send His perfect Son to die an awful death just so He could spend eternity with you.
You are overflowing in worth.
You are abundant in grace.
You are rich in love.
You are drowning in eternal purpose.
You are wealthy in the bank of importance.
You are beaming with His radiance.
You are shining in Marvelous Light.
You are deserving of love & prosperity because He created you to be loved & prosper. Don’t let anyone, anything, or any circumstance tell you differently.
And now that I’ve expressed all these bottled up, weird feelings, I see that it is not wrong to desire more in this life… it’s okay to want more. Because wanting more means we are desiring to become better, more productive, kinder, stronger versions of who God created us to be. And as we grow more & more into that perfect creation, we start to look more & more like that perfect Creator.
Sending you love,