Tag Archives: chronic illness

No Turning Back, No Turning Back

no turning back

Photo Credit: Roost Photography

“What if I wasn’t created with love and intent for a specific purpose? What if I really am just an abnormality explained by science… essentially, a cosmic mistake? There’s a mystery behind being known and understood that gives life meaning.”

I wrote out these words at 1 am as I sat crying silently in my bathroom and let myself travel down the mental path of questioning what my life would look like if I truly believed those first two statements.

It was frightening. It looked like despair. A life void of value. Complete, unending darkness that would swallow me. It looked like death.

But I needed to sit in it. I needed to let myself go there and feel that in it’s completeness. I needed to find out if God’s love was deep enough and wide enough to cradle those questions.

Surprisingly, after all the pain that I’ve experienced, I never had questioned that God allowed the formation of my spine to stop at L5, leading to permanent life long damage of a clump of some of the most important and delicate nerves in my body. I had always just accepted it.

Recently, I uttered a phrase to a friend who is hoping in her journey with singleness. I said, “You know what your life would look like if you abandoned your belief that God is good and has a purpose in all of this. But you don’t know what it will look like if you keep trusting him. There’s hope in that.”

I realized that I’ve played this mantra over and over silently in my mind but had never given a voice to it.

know what my life would look like if I abandoned my faith in Jesus. I would be angry and cynical about my pain. I would be self-centered, my faith would rest solely in doctors and my identity would be my disease. I would use alcohol and cutting to numb the emotions that I didn’t have the mental strength to process. I would make all my decisions based on my feelings. I may have not even had the opportunity to write this because in a moment of mental exhaustion, I likely would have chosen suicide.

I’m in the middle of a 30 week seminary class titled “Biblical Theology and Interpretation”. Every Monday night, I leave the class feeling like my mind is going to explode from information but what  I am learning about how to study the Bible and about the Bible itself,  are life changing.

This weekend we looked at how to deal with doubt and hard teachings in the Bible. We focused on John 6: 48-69

“I am the bread of life. Your fathers ate the manna in the wilderness, and they died. This is the bread that comes down from heaven, so that one may eat of it and not die. I am the living bread that came down from heaven. If anyone eats of this bread, he will live forever. And the bread that I will give for the life of the world is my flesh.

The Jews then disputed among themselves, saying, “How can this man give us his flesh to eat?”

So Jesus said to them, “Truly, truly, I say to you, unless you eat the flesh of the Son of Man and drink his blood, you have no life in you. Whoever feeds on my flesh and drinks my blood has eternal life, and I will raise him up on the last day. For my flesh is true food, and my blood is true drink. Whoever feeds on my flesh and drinks my blood abides in me, and I in him. As the living Father sent me, and I live because of the Father, so whoever feeds on me, he also will live because of me. This is the bread that came down from heaven, not like the bread the fathers ate, and died. Whoever feeds on this bread will live forever. Jesus said these things in the synagogue, as he taught at Capernaum.

When many of his disciples heard it, they said, “This is a hard saying; who can listen to it?”

But Jesus, knowing in himself that his disciples were grumbling about this, said to them, “Do you take offense at this? Then what if you were to see the Son of Man ascending to where he was before? It is the Spirit who gives life; the flesh is no help at all. The words that I have spoken to you are spirit and life. But there are some of you who do not believe.” (For Jesus knew from the beginning who those were who did not believe, and who it was who would betray him.) And he said, “This is why I told you that no one can come to me unless it is granted him by the Father.”

After this many of his disciples turned back and no longer walked with him.

So Jesus said to the Twelve, “Do you want to go away as well?”

Simon Peter answered him, “Lord, to whom shall we go? You have the words of eternal life, and we have believed, and have come to know, that you are the Holy One of God.” 

If you’re familiar with the Bible, imagine being the Jews and hearing Jesus say this for the first time. They would not have had his death on the cross and Resurrection to put it into context. They would have had no idea of our modern tradition of communion. This all would have been gross and confusing. It’s not surprising that the response of MANY of his followers was to “turn(ed) back and no longer walk(ed) with him.

I love Simon Peter’s response to Jesus’s question, though, “Do you want to go away as well?” He doesn’t reply, “Of course not! I totally get everything you just said and I’m in it to win it, no questions asked!”. Rather, Peter’s response suggests that he had thought about turning away and if he did, to whom he would turn to…and he was one of Jesus’s best friends!

But ultimately, Peter chooses to stay because of everything he had “come to know”. A better translation of this would be because of everything he had learned over time…the time he had spent living with Jesus. He had seen and heard enough truth to believe that Jesus was “the Holy One of God.”. Did he doubt? yes. Did he lack understanding and probably think some of what Jesus said was hard to accept and a little crazy? yes. Did he think about turning back to his former life and job as a fishermen? yes. But he knew enough to know that going forward with Jesus was filled with more hope than turning back.

I know what God has done in my life up to this point. I know what my life would look like without his death on the cross and Resurrection from the grave. I know enough to continue clinging to my faith.

As I continue to have increasing pain and disheartening diagnosis’, I have found myself humming this familiar tune;

“I have decided to follow Jesus;
I have decided to follow Jesus;
I have decided to follow Jesus;
No turning back, no turning back.

The world behind me, the cross before me;
The world behind me, the cross before me;
The world behind me, the cross before me;
No turning back, no turning back.

Though none go with me, still I will follow;
Though none go with me, still I will follow;
Though none go with me, still I will follow;
No turning back, no turning back.

My cross I’ll carry, till I see Jesus;
My cross I’ll carry, till I see Jesus;
My cross I’ll carry, till I see Jesus;
No turning back, no turning back.”

This video shows the story God has given me. It was created and used by my home church, Elmbrook and I hope you are encouraged by it. Video filmed and edited by Matt Roth.

Much love,

Adri

 

 

 

 

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I’m Not Home

Female Runner Feet - Running on the Road - Women Fitness

(Caution: In a few paragraphs there will be a picture of my actual colon. If you get queasy, you may want to scroll quickly)

I am in so much pain.

Not because I had my entire colon removed three months ago, but rather because we joined a local gym and I’ve been “working out”. My quads are so sore. I put “working out” in quotations because I am ridiculously weak so at this point I consider it “just building up endurance”.

March 1st marked three months since I had over 4 ft. of large intestine (or colon) removed from my abdomen through three small laparoscopic incisions and one large incision on top of my C-section scar. It was my 23rd surgery.

( picture of my completely empty colon, upon immediate removal of my abdomen… it’s a little insane that all 7 lbs of THAT came out of me! )

The surgery went smoothly and I am thankful to have it behind me. There is always a risk of significant blood loss due to the vascular nature of this organ, but thankfully that risk never materialized. I was in the hospital for four days and had a few very significant events happen during that time (but those will come in another post).

Four weeks after my surgery (which has a six to eight week recovery time) we drove to MI to spend Christmas with my family. At the end of January, I started teaching Fashion Illustration II at Mount Mary University at the start of our Spring 2017 semester. Life’s brisk pace has continued as our family recently completed the necessary requirements of becoming foster and adoptive parents in Milwaukee County (a journey we started in October of 2016…also for another blog post) and Chris and I took a trip to Maui, HI to celebrate our belated 10 year wedding anniversary that occurred in September.

Life is finally starting to return to “normal” and by that I mean “manageable” and every morning I find myself staring into my bathroom mirror at a body I don’t even recognize.

There are new scars where scalpels and metal probes have pierced. There is skin that used to be supported by ribs and is now a helpless victim to gravity. There is still swelling (or built up scar tissue, I’m not sure which) at the incision site where they removed Promise from my body over eight years ago. And of course, there’s the flesh colored 3″x3″ sticker that covers up the portion of small intestine that will forever protrude from my abdomen and connect to my ileostomy bag … something that will now (at the age of 32) be a permanent fixture on my body.

It used to be that I only had the surgical manipulations of my body working against me. Now I have those and the natural process of aging.

If you add all of these changes to the deformities in my legs that I’ve lived with since Junior High School, the sight I see staring back at me in the mirror can be a little discouraging. I may look thin in clothes but I don’t feel strong or toned.

I don’t think I’ve ever written a blog entry revealing my insecurities about my “post-23 surgeries” body. Frankly, it’s because in the eternal-scheme of things this body will crumble away and there are more significant things to write about. But it is something I struggle with and have struggled with since my early teenage years.

I know that I looked for a woman living with a disability that could have been a sounding board for me at those vulnerable ages and seasons of life, so maybe I can be that for someone else.

One mental exercise that I do regularly is silently listing in my mind, all the reasons that my body is awesome. (cue the “Everything is Awesome” song from the Lego Movie). It sounds a bit silly but it helps! Instead of seeing legs that look underdeveloped and strange, I re-inforce to myself that I see legs and feet that have endured over 13 surgeries, three years of walking in Chicago, and carrying my (now eight year old) child to term for nine months. That is just one example. I take each body part that I’m feeling insecure about and do that same mental practice to it.

Am I completely satisfied with my body? No way. Am I thankful for what it’s overcome? Absolutely.

With all of that said, there is always room for improvement and I believe that our bodies (no matter how beat up) are temples of the Holy Spirit. We are told this in 1 Corinthians 6:19-20 and so we need to take care of them.

“Do you not know that your bodies are temples of the Holy Spirit, who is in you, whom you have received from God? You are not your own; you were bought at a price. Therefore honor God with your bodies.” – 1 Corinthians 6:19-20 (NIV)

This verse encompasses much more than simply the physical health and appearance of our bodies, but I do believe that it is a key element.

This is a new(er) way of thinking for me. Before correctly diagnosing my major depression and starting the medication that has aided in the healing of my mental health, my views towards my physical body ranged from compulsive and obsessive (i.e. my legs are so skinny due to my lack of calf muscles so I need to keep the rest of my body equally as skinny, even if that means barely eating, in order to stay proportionate) to indifferent and apathetic (i.e. if I don’t take care of my body, the quicker it will deteriorate and I can leave it behind through death). These feelings aren’t easy to admit, but they have been true at different seasons of my life.

I am thankful for the healthier view I now have about my physical body. I truly want to be as strong and healthy as possible in order to continue to climb the stairs in my house, foster children, watch Promise grow up, be an active and fun life partner to Chris, etc.. I know that being a good steward of the body God has given me, includes doing what I can (I emphasize this because I KNOW how limiting chronic illness can be and only you can truly know what your body is capable of) to keep it functioning at the healthiest level it can.

I know it’s ultimately a losing battle (it is for all of us, isn’t it?) but I want to “go down swing’n”.

The gym has the keen ability to push every insecurity that I have about my body to its highest threshold. I have to adapt almost every exercise that is shown to me, which immediately sets me apart from everyone. My legs from my knees down are simply dead weight that are void of sensation and movement, making them cumbersome at best. If I decide to swim, I am put in the “injured and elderly” water aerobics class and struggle to walk to the pool without my leg braces on, knowing that immediately after the class I’ll need to change my ileostomy bag because the adhesive will be soggy. I understand that people stare because they are curious and I honestly hold no grudge or ill-will against those that do, but it still hurts every time I see the direction of their gaze.

Essentially, the gym is a constant reminder that this place and this body are not my home.

I am thankful for a husband who loves me, a daughter who looks up to me, and friends who come alongside me to my pilates classes even if I’m bound to stand out a bit.

If you’re living with chronic pain and struggling with your self-image, I want to tell you that that is normal. Even though I don’t talk about it often, it’s often on my mind. I believe that it is another way God uses our suffering to transform our minds more and more into his perfect and unblemished likeness.

Give yourself space and time to grieve the physical appearance you hoped to have, but you must get up and keep pushing on, knowing that this in not your final home. Take care of it but don’t become obsessed by it. View it in humor and not in despair.

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.” – James 1:2-4

-Adri

 

 

 

 

 

 


An Eternal Perspective

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(Written in August 2016)

Two years ago I agreed…actually sought out…to have a surgery that I had always considered a “last resort”. However, my health had reached a point where it now sounded like a dream.

Since my second spine surgery in 1995, I had lived with severe constipation due to nerve damage done to my bowels and bladder. The damage was irreparable. So at the age of nine years old, I learned how to self-catheterize and do a bi-weekly bowel routine that consisted of a large dose of laxatives followed by 10-12 hours of cramping, nausea, vomiting, dehydration, and occasionally blacking out.

Mentally, this routine was brutal. Physically, it became unbearable. I did this bowel regimen through high school, college, into marriage, through pregnancy (the worst), until Promise was six years old. (There were nights where I even nursed her while on the toilet! I’m sure she’ll love hearing that when she’s older.)

The day following this routine, my body would be completely exhausted. Once my Chiari Malformation was diagnosed, we realized that the continuous straining on these nights was exasperating the symptoms of this brain malformation. We knew it was a cycle that could not continue any longer, both in order to preserve my health and to improve my quality of life.

So in November of 2015, after much testing and discussion with my colorectal surgeon, I had a loop ileostomy placed. It has been a life-changing procedure that (even with its challenges) I am abundantly thankful for.

Recently I began having cramping, nausea, and vomiting. After two weeks of experiencing this, my colorectal surgeon sent me for an X-ray that confirmed I had stool in my colon. I was blindsided and shocked by this news, because I didn’t know this was possible after an ileostomy.  I have learned that with a temporary ileostomy (it can be re-connected to my colon) this can occasionally happen.

All of this has launched us into a (sooner than expected) discussion of when to go back into surgery to create a permanent ileostomy by removing my colon and rectum.

As I worked through the questions and emotions of removing these organs and my body changing, yet again, I felt tired and weighed down.

I cried. I slept…a lot. Then I woke up and I knew that crying and sleeping were beneficial for a time, but I also knew they couldn’t be my long-term solution for working through this grief.

Promise was at an impromptu sleepover and Chris was out of town. It was 11 pm (but I had slept all day) so I turned on my “Meredith Andrews Pandora Station” as loud as it could go and began doing the dishes. Those of you who have struggled with the heaviness of depression can understand what a huge step this was. All I wanted to do was crawl back under my covers, but I thought I’d try praising and thanking God…not even for the situation…but simply for who He is.

I realized in that moment, even if I couldn’t thank him for this new hurdle yet, I could still thank him for his character and his promises. Those are not affected by my circumstances.

As I sang, I cried some more, and then I felt his peace and joy wash over me.

There is a reason that “Praise” and “Thanksgiving” are mentioned as commands so many times in the Bible. They are vital to our health and can change our perspective when our situation is unchangeable.

The book of Revelation is a “revelation (in Greek, apocalypse) from Jesus Christ”** or a prophecy recorded by John. In Revelation 7:9-13, it describes the saints that have endured suffering in the name of Christ, have come out of the tribulation, and have had their robes washed white by the blood of Christ. And they are on their faces before the throne of God saying,

“Amen!

Praise and glory

and wisdom and thanks and

honor

and power and strength

be to our God for ever and ever.

Amen!”

– Revelation 7:12 NAS

I was reading a commentary on this passage and there are two powerful observations about this group of verses;

“1. They acknowledge the glorious attributes of God-his wisdom, his power, and his might.

  1. They declare that for these his divine perfections he ought to be blessed, and praised, and glorified, to all eternity; and they confirm it by their Amen. We see what is the work of heaven, and we ought to begin it now, to get our hearts tuned for it, to be much in it, and to long for that world where our praises, as well as happiness, will be perfected.” – Matthew Henry:: Commentary on Revelation 7, Blue Letter Bibl

Stuart and Jill also reflect on this idea of “getting our hearts tuned” for heaven while here on earth, in their recent book, “Improving with Age: God’s Plan for Getting Older and Better”. They say,

“Consider this possibility: Could it be that wasting away physically and being renewed spiritually are equal and opposite realities? Could both these processes be preludes to, and reminders of, the physical return to dust and the spiritual return to the Creator? Are we living now in processes that will be completed later in eternity?”

Praise and thanksgiving towards God in the midst of our suffering will transform our perspective to that of an eternal one and give way to chronic hope.

 ** “How to Understand the Bible: A Simple Guide” by Mel Lawrenz

-Adri

**Printed in the Winter 2017 Issue of Just Between Us Magazine. JBU is a magazine designed to “encourage and equip women for a life of faith” and was started by Jill Briscoe 26 years ago. To learn more about JBU, visit their website, and/or subscribe, click here.”

 


Chronic Hope

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(Printed in the Winter 2015 Issue of Just Between Us Magazine)

When you live with or love someone with a chronic illness, you soon learn that it requires you to make a plethora of unending decisions. When you reach the “D” section in your phonebook, the list of doctors seems endless. Some of these doctors are even programmed into your speed dial. Maintaining a “baseline” is important so there are tests and procedures that have to be repeated year after year after year. You experience physical pain week after week after week. There are questions and emotions that you have to battle day after day after day and sometimes moment after moment after moment.

 

Living with a chronic illness is exhausting. By definition it is constant, ceaseless, persistent, and unending.

 

One of the most challenging things for me about living with Spina Bifida is how many areas of my body it has affected. It affects my bladder, kidneys, bowels, legs, feet, nerves, and muscles. Recently it has begun to affect my neck and brain. I routinely see a neurologist, neurosurgeon, podiatrist, urologist, gastroenterologist, and physical therapist. On occasion I’ll see a shunt specialist, hematologist, and orthopedic surgeon. If I’m bored I’ll see my primary doctor.

 

Let me assure you that I know how exhausting it is. Especially when I stop to consider the fact that despite all of these appointments, there is no cure for my condition. Unless God decides in his infinite wisdom to heal my physical body, I will never “get better”. At most, I can attempt to maintain my current health for as long as possible.

 

This would be so depressing if it stopped right here.

 

But it doesn’t. God has provided a way for us, in chronic illness, to have chronic hope.

 

You see, God will use pain to develop you, but he never meant for it to define you. I have found that the days that I feel the most hopeless about my health are the days that I let my suffering become my sole focus. My whole purpose in living becomes wrapped up in trying to cure it, trying to maintain it, or trying to dull it.

 

On these days I have to take a step back and remind myself that God has created me to be so much more than that. I have to re-read passages in my Bible that fill me up with the hope that God is using all of this for something much bigger than I can understand. One of the things that I love about Jesus’ life is how he specifically chose people suffering with physical disabilities in order to display to the onlookers that he was the Messiah they had been waiting for. These broken lives mattered greatly to him and they became his tools in which his glory and power shone brightly. If you’re hurting today, my prayer is that that brings you so much hope and encouragement!

 

Not only does God promise to use your pain on a large scale, but he desires to use it in a very personal way too. He wants it to become the tool with which he molds you into a person that reflects everything about his character.

 

What would that look like? It would look like a person that is thankful for their doctors, patient with their caretakers, loving toward their family, and even joyful during their colonoscopy. It would look like a person who shows gratitude about the function they do have rather than grumbling about their limitations. It would be a person who cries tears of deep pain, all the while knowing peace is not based on the feelings contrived by their reality, but rather on the truth that God has laid out in the Bible.

 

It’s a person that I have begun to ask God to make me into. It’s a person who’s living with chronic hope.

 

2 Corinthians 4:16-17 says, “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.”

-Adri

To order Just Between Us Magazine, visit www.justbetweenus.org

 

 

 


The Frustration of Forced Rest

The value of Grey

My eyes followed the delicate floral pattern of greens, browns, yellows, and periwinkle that scattered haphazardly across my pillowcase. Except I knew that this floral print that I was laying on was not formed on accident, but had an intentional pattern…a repeat…that I had identified. I had been studying it minute upon minute, hour upon hour, day upon day, and week upon week. I knew it better than anyone.

I could also tell you the placement of each knot in our family room wall’s wood paneling, the number of vertical gray slats that hung lifelessly across the door wall that led to an outside that I wasn’t allowed into, and every color of carpet fiber that was woven into the Berber carpet where my mattress lay.

I was ten or eleven years old and enduring, what seemed to me, like an eternity of solitude. My pediatric neurosurgeon had ordered me to be on strict, flat bed rest for one whole month. This sentencing was preceded by spine operations to (once again) untether my spine. I was dealing with complications of cerebral spinal fluid leaking out from my Dura, which led to severe, head-throbbing, nausea-inducing, headaches and would eventually require another spine surgery to remedy. Grasping at wisps of hope, my neurosurgeon had placed me flat on my back with a tight dressing of gauze and hospital tape that covered the squishy fluid pocket sitting beneath my skin on my spine. The goal was to relieve the pressure of the fluid pocket long enough for the CSF leak to heal on it’s own, sans surgery.

My parents had moved my twin mattress down to our family room and it was there that I was “stuck”. I grew restless of TV and found myself sketching bridal dresses out of old copies of BRIDE magazine. I read “The Diary of Anne Frank” and cried for hours at the injustice of her story. I tried to journal my own thoughts in a small fluorescent colored Lisa Frank diary, but my words fell flat in comparison to the sharpness of my inner turmoil. Every time I needed to go to the bathroom, my mom would bring a bed pan and help me catheterize myself. My friends would stop by after the 3pm bell and excitedly chat about all of the things I was missing at school. They’d leave and I’d miss the warmth of their companionship as the cold, isolated, overwhelming pile of “make-up” homework grew taller.

And so I’d lay there. I’d memorize the pattern of my bed sheets, the knots in the wood paneling, the slats in the blinds; and warm tears would roll down my cheeks because I was in a forced period of rest and isolation that I never wanted to be in in the first place.

Twenty one years later, I can look back on this time of solitude…of stillness…and be thankful for it and many others like it because those are the times where I met God. Those were the moments where I felt the most dead inside, but God was cultivating the most growth. He saw past a small broken little girl and saw the potential for a women who could fiercely love and trust him even when she knew the pain would never stop. He knew that these inconvenient moments of isolation were necessary to transform me into who he wanted me to become.

Maybe you find yourself in one of these periods of “forced rest” right now? I understand friend….they can be so frustrating. We live in a culture where resting is viewed as laziness, where solitude is viewed as simplemindedness, and where unproductivity is viewed as worthlessness.

I am here to buck every one of these notions because they are unbiblical and I have repeatedly experienced their untruth. It is in these moments that we have the potential to discover how personal God is, how much he longs for peace and joy to be the markers of our lives, and his yearning to give us eternal vision…not temporary sight.

If this is you today, will you do something for me? Will you ask God to show you something about himself or about his character? Will you thank God for the exact position you are in, even though every fiber of your being wants to curse him for it?

I promise you that he will not fall flat. He will not leave you empty. He will not disappoint you. It may take you twenty one years to see it….but you will see it.

Jeremiah 29:13 ” You will seek me and find me when you seek me with all your heart.”

Psalm 46:10 “Be still, and know that I am God.”

Mark 6:32 “So they went away by themselves in a boat to a solitary place.”

God began impressing upon my heart to share this with you when I read Psalm 4:4 in one of my times in the Bible. It’s not a well-known passage, but it struck something inside me. It reminded me of this lesson that I have learned. It says, “In your anger do not sin; when you are on your beds, search your hearts and be silent. Offer right sacrifices and trust in the Lord.” David says this because he has been spending a lot of time in forced solitude and isolation. He has been hiding out in caves and he knows the truth that if you are silent and honest in your hearts when you are alone, it is impossible not to find and know who God is. David has experienced that when he’s angry because of his circumstances, in silence before God, anger can be transformed into trust.

John Ortberg said, “Waiting is the hardest work of Hope.”.

Psalm 37:7 “Be still before the LORD and wait patiently for him; do not fret when men succeed in their ways, when they carry out their wicked schemes.”

Rest well friends.

-Adri


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