His Masterpiece

“What a reminder that we, in all imperfections, in all our inabilities– our disabilities– we are still HIS MASTERPIECES!” – Katherine and Jay of Hope Heals

I was nine years old and had been in the hospital long enough to make TV boring to a nine year old (that is a long time). I began sketching the characters on the cereal boxes that came on my hospital tray each morning…sugary cereals…I never got those at home. Toucan Sam, Tony the Tiger, Lucky the Leprechaun…I drew them all in watercolor pencils and the nurses hung them up on my hospital room bulletin board.

I was recovering from a series of four spine surgeries to untether my spinal cord and seal CSF leaks. I had contracted staff infection and lost nerve function to my bladder and bowels. The nerves that sent signals to my leg muscles had been irreversibly damaged, resulting in drop foot. It was going to be a long road ahead.

I began drawing more. I sketched wedding dresses out of “Bride Magazine” and copied illustrations out of “Alexander and the Terrible, Horrible, No Good, Very Bad Day”. Soon I had so much artwork that the nurses began hanging them in the patient rooms all across the pediatric floor.

That was the moment that I realized art could be both therapeutic for my pain and bring joy to others.

As I continued to fight to recover from these five surgeries and endure 18 more surgeries, along with major depression, art became as necessary as breathing to me.

The following pieces were all created throughout middle school and high school and express the unending roller coaster of emotions that I wrestled with; from despair over seeing my body disfigured and cut open, grief and mourning over losing function, perseverance and determination to get back up and walk again, and periodic choruses of joy in the midst of my depression.

So when I saw that Katherine and Jay’s LA based ministry, Hope Heals, was having a “call for artists” to donate artwork that could be auctioned to raise funds to send families with disabilities to their summer camp for FREE… you can understand how I felt I didn’t have any other option but to submit my artwork. This opportunity combined my two greatest passions.

I honestly did not expect my painting to be chosen and included in the live art gallery auction held this past Saturday, April 22nd, in LA. So, when I opened the email saying it had been chosen, I literally screamed (Promise was in the kitchen at the time…so you can ask her for an imitation of my reaction).

Below is a photo of the acrylic painting that I donated

(12″x36″ acrylic on canvas)

This is a newer style of painting that I have been doing. The images are simply out of my mind. I love them because I feel like they represent the mental healing that I have experienced from the depression that I struggled with for years and years.

It is such an honor that it is being used to hopefully provide some degree of emotional, mental, or physical healing in another persons life through the ministry of Hope Heals.

You can view all the art entries that were auctioned off by clicking here. 💕

“For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.” Ephesians 2:10 NLT

-Adri

I’m Not Home

(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

(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.

2. 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.”

 

“No Guts, No Glory?”

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.” 2 Corinthians 4:16

This past Sunday was my 2^nd “stomaversary”. I’ve been doing life with my ileostomy bag for two years. I spent that morning reflecting on God’s faithfulness and goodness in my life. It’s been challenging, no doubt, but I’ve been undeniably held by grace.

However, the joy and gratitude I’m feeling as I pass this anniversary, is mingled with a heavy heart over the undeniable truth that my body is wasting away. All of our bodies are, actually. Mine is just doing so at a more rapid clip.

Three weeks from today, on Thursday, December 1^st, I’ll have my 22^nd (23^rd if you consider my C-section) surgery; this time to remove my entire colon. It’s a decision that has been hanging in the balance since I had my ileostomy put in and it will be a relief to not have the weight of that decision lingering over me anymore.

This past June, I began to have severe abdominal cramping that would make me nauseous and vomit. It would occur every evening and so after a week of this, I called my colorectal surgeon’s office to discuss. After some back-and-forth about what may or may not be causing the cramping, I finally asked if they could do an X-Ray of my colon, just to give me peace of mind that everything was OK.

After having the X-Ray, his office called me before I had even arrived home from the hospital, to tell me that my colon was completely compacted with stool and they were pretty taken aback by it. I felt absolutely blindsided. I was constipated?!? I had no idea that this was even possible while living with an ileostomy.

Apparently, when you have a loop ileostomy (which means that my colon is still partially connected to my small intestine at my stoma) there is a rare chance that stool can still back up into the colon. For these past two years, I had been under the assumption that there was only one hole in my stoma, the one in which everything empties out of my small intestine and into my bag. I’ve since learned that there are TWO holes and the second one leads directly into my colon (surprise!!).

Once I had this all figured out, we were left with the issue of emptying out my colon. This was problematic for many reasons, but the main one being that due to severe nerve and muscle damage in my colon, Senekot laxatives (overdosing on them) had been the only solution for constipation, pre-ileostomy. However, Senekot must interact with enzymes in the colon in order to be activated. Because of my ileostomy, Senekot wouldn’t even make it into my colon anymore, so that option was out.

The alternative was to begin doing an “irrigation” process of sorts. Let me preface the description of this process by saying that the colon, small intestine, and my stoma (the opening in my intestines that “hangs out” on my stomach) are NOT sterile environments. They were created to handle hard-core bacteria. Therefore, when doing this irrigation process, keeping things sterile wasn’t a concern. I mention this because it was a significant mental hurdle that I had to sort through, as it just seems so bizarre (and probably will to you, as well).

During this irrigation process, I can’t have an ostomy bag covering my stoma, so my small intestine is still emptying waste as I’m doing this. I take one of my straight urinary catheters (I’ve self-cathed since I was 9 because of nerve damage to my bladder) and insert it into the hole in my stoma that connects to my colon. It’s about 6” of tubing that goes inside me and it’s extremely uncomfortable. The first time I did this, I got a little queasy, as I can feel the pressure of the tubing as I snake it up into my colon. Once the catheter is in, I inject about 2-4L of fluid into the tube, using a large syringe. The fluid is the same nasty stuff that you drink before a colonoscopy (Can I get a “nod” of understanding from my 50+ audience out there;)). This fluid then flushes everything out of my colon. I won’t go into too much detail of the process, but I can assure you it’s not fun and causes several uncomfortable and inconvenient side effects.

After completing this process twice in the last three months, and each time having my colon full of stool, we’ve decided to go in and remove my entire colon, which will permanently prevent this from happening. Deciding to voluntarily remove over four feet of healthy organ from myself was not an easy decision, but even less so since I am only 31 years old (I like to think that is still young). We approached this decision as we always have tried to do, with focused prayer for wisdom, the skilled advice of my doctors, and time to process and weigh my options. Chris works in the medical device industry and we know how quickly technology can be developed and changed, so we’ve learned to take all of this into consideration when deciding to permanently alter the function of my body.

The surgery takes two to three hours and they will leave my rectum (if you’re feeling biologically “lost” at this point…google it). Leaving my rectum intact will allow for things to be reconnected, if technology does go in that direction in the future. It also will prevent my uterus and small intestine from falling down (which sounds horrible). The majority of the surgery will be done through four or five laparoscopic incisions in my abdomen and then one larger incision (about the size of a credit card) below my underwear line, where they will pull my entire large intestine out. Kind of like a c-section…except, “Surprise! It’s a colon!”.

Since the colon is such a vascular organ, blood loss is the main complication to be concerned about. The colon is connected to the stomach, liver, and spleen, so please pray that as my surgeon is disconnecting all of these vital organs, blood loss stays at a minimum. My stoma will stay in the same spot it currently is, but it will have to go through the healing process all over again. I feel thankful that I have already experienced this part of the recovery and am praying that it makes the entire process a little easier. I will be at Aurora St. Luke’s Hospital in Milwaukee for a minimum of three days following surgery, to monitor me for any infections, vascular tears, internal bleeding, etc.

The timing of this surgery is not ideal, but I’m thankful that this will force me to slow down during the month that is often my craziest of the year. I’ve learned (and written a blog post) about the treasures that can be found in the monotony of forced rest and I am eager to have stillness to focus on the celebration of Jesus Christ’s birth. They estimate the recovery time to be 4-6 weeks and it mainly consists of exhaustion (from blood loss).

As I said, I know that this is an especially busy time of year and in light of the recent election, most of us are emotionally exhausted. But it would mean so much to Chris, Promise, and me if you are able to pray for us as we tackle yet another alteration and change to my body and our day-to-day lives. Praying is a matter of the heart and can be done while driving, wrapping gifts, cooking, or any other “mundane” activity. We have seen the indisputable results that come from the power of prayer in my life and so that’s why we’re asking for this.

Thank you, friends! And may you continue to experience HIS presence in your life and the peace and joy that only the Holy Spirit can bring through the understanding of Jesus Christ’s resurrected body from the grave.

“For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.” 2 Corinthians 4:17

Plodding in the Desert

I’ve been spending time in the desert lately. Things have felt dry and parched and starving for refreshment. I’ve traveled this terrain enough times to know that there is purpose in it, but it doesn’t make the journey any easier.

Since the beginning of this year, I’ve felt a shift. That’s the only way I can describe it. Something is different with my health, but I can’t put it into words. My body feels tired all the time and it’s really hard to process that. I’ve shared these feelings with a few close friends and Chris (of course) but it’s made it difficult to write. I’ve needed a lot of me and Jesus time, with no other voices involved.

I’d like to tell you that I’ve sorted things out, but I haven’t. God’s given me a few incredible gifts along the way…things I think he knew I’d need to keep on pressing on.

One thing I do know is that along with this “shift” has come an even greater urgency for me to share with you how real God can be in your life and how very much he is needed.

It’s been a tough year so far with my health. I shared in my last post about complications with an infection in my foot. Shortly after that, I took a hard fall to polished concrete at my favorite restaurant on a date night with Chris. Ironically, Chris was about the only person in the restaurant to NOT see me fall. After a few weeks of feeling as if I’d been hit by a bus, I went in for X-rays to check out (what I thought) were cracked or bruised ribs. It turned out that I had a compression fracture in my vertebrae just below my fusion in my thoracic spine. The assumption is that is happened because of the fall, but much like a cracked rib, the only pathway to healing was time and rest. Months of time and rest.

Which brought us to the end of March in which Chris and I took a belated Anniversary trip to Puerto Rico. The warmer weather and steady climate did wonders for my pain, but the endless hours to lay around on the beach and “think” were a surprise I hadn’t bargained for. Finally on the last night of our trip, over an amazing dinner, I apologized to Chris for being so quiet the whole week (my timing is impeccable, I know). I told him the more I tried to figure out why I was so introspective, the more introspective it had made me. (Introspective is a fancy word for quiet and boring).

And then it hit me; this was the first time Chris and I had done a beach vacation…just the two of us, no family or friends…in five years. And in five years, my body has changed a lot. I had a major spine surgery that changed my entire neurological makeup along with shortening me an inch (still peeved about that one…) and an ileostomy bag placed. So to go on a vacation where you’re pretty much living in a bathing suit 24/7, was hard on me. I felt self-conscious and embarrassed (for Chris) the whole time. I was frustrated that I had to use my wheelchair so much, because getting around at the pool without my leg braces is hard and dangerous. The stares bothered me more on this trip than they ever had before. And it bothered me that it bothered me.

And it hit me afresh like a tidal wave that my health is not getting any better, but in fact is getting worse.

I keep having this re-occurring nightmare where I show up at the office of my Neurologist. In my dream he’s a faceless individual…older, kind…but I never am actually called into be seen by him. The dream progresses (they improved the elevator in one of them…) and I see him in the waiting room, or at a coffee shop in the hospital lobby, but I never hear his diagnosis of me and I never actually get real clinic time with him.

It’s troublesome to me and I think it probably has to do with a pending appointment I have with a new local neurologist here in Milwaukee in June. I’ve had the appointment scheduled for several months now, after my primary doctor urged me to find someone to look into a tremor that I’ve developed. They think it’s further autonomic dysfunction due to my deteriorating nervous system, but it would be good to rule out any other neurological causes (MS, fibromyalgia, parkinsons, etc.).

And I think that’s when I start to come full circle about this “shift” I’m feeling. I think part of this shift is that I no longer have a great desire to figure all this out. I’ve gotten to a point where a diagnosis is just a name. I know there is no solution, no cure, and so it all seems so futile to me. But I have this internal wrestling going on inside because I would never want Chris or Promise or anyone that I love to think that I didn’t try my hardest to live the longest, healthiest life I could.

And so that is a small window into what my desert has looked like lately. Ironically, all of this comes after giving a talk titled “The Battle for Hope- How to Keep Getting Up When You Get Kicked Down” at our Church, Elmbrook, in early March. How I’ve listened to my own advice over and over and over. I’ve repeatedly told myself that it’s not about feeling God, but knowing the truth of God. It’s about making a choice to keep plodding along, even on the hardest, driest days….that somehow God will not let that go in vain.

I was laying in bed last Sunday night, Chris silently sleeping beside me. My health and the future of my health felt like a weight on my chest and I was silently trying to muffle my sobs. I felt a nudge from the Holy Spirit to get out of bed and get on my knees by my bedside. Again, I knew it was God’s spirit because it’s not a thought that would naturally come from my human-ness. I mean getting on my knees is hard for me. It hurts. My left foot is at a permanent 90 degree angle, so it’s uncomfortable. Really awkward.

After a few moments of wrestling in my head with whether or not I was actually going to do this, I slipped out of bed and onto the floor. And I wept. And I surrendered my health to God, afresh…asking him to take it all. As I crawled into bed I had the most incredible peace where the heaviness had been. I wanted to read my bible but it was down in my car, so I opened up the bible app on my phone. Apparently the last time I had been reading it had something to do with looking up the verse we named Promise after; Psalm 145:13 NIV.

As my eyes read through verse 13 and into verse 14, my breathe caught in my throat. I had never paid attention to the verse following “her” verse but it read:

“The LORD upholds all who fall and lifts up all who are bowed down.”

I know that no matter what lies in front of me, or for however long this desert period lasts, God will lift me up if I continue to bow my life to him.

-Adri

Desiring the Healer more than the Healing

One of the hidden gifts of suffering is empathy or “the ability to understand and share the feelings of another”. As my physical body continues to deteriorate and lose feeling, my heart becomes stronger and more sensitive. It’s a beautiful contradiction that shows, once again, how God is working out all things for the good of those who love him (Romans 8:28).

This empathy isn’t reserved only for people who are presently intertwined in my life. It gushes out whenever I hear or read about someone who has or is experiencing physical pain similar to mine.

Since the Bible is filled with stories of broken, pain-filled people, I’ve discovered that empathy plays a key role in scripture becoming personal to me.

I was reading in Acts 3, a story that I’ve read several times without feeling any emotional attachment to. This chapter chronicles the story of a crippled beggar who is miraculously healed during his encounter with the true Healer, through the apostle Peter. You can read it below for yourself;

“Now a man crippled from birth was being carried to the temple gate called Beautiful, where he was put every day to beg from those going into the temple courts. When he saw Peter and John about to enter, he asked them for money. Peter looked straight at him, as did John. Then Peter said, ‘Look at us! ‘So the man gave them his attention, expecting to get something from them. Then Peter said, ‘Silver or gold I do not have, but what I have I give you, In the name of Jesus Christ of Nazareth, walk.’ Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. ” Acts 3:2-7

As I read through this story again, my heart caught in my throat at that last phrase… “instantly the man’s feet and ankles became strong. “

My feet and ankles have not looked or functioned normally since I was about eight years old. The appearance of my feet in the past few years would send a “normal” person racing to the ER. I have a very limited amount of sensation in them and an even more limited amount of motion. I have poor circulation, so most of the time, my feet are a purple-ish blue color and cold to the touch. I have periodic neuropothy (similar to a diabetic foot), arthritis from previous operations, scars, and occasional nerve pain that is so intense it will cause my entire autonomic nervous system to overreact, leading to severe muscle cramping all over my body, numbness, headaches, etc.

To put it simply, they are a burden. About two weeks ago, they became even more of a burden when I developed a tiny crack in the dry skin on my left heel. We had a cold snap up here in WI and temps were in the double negatives for a few days. This sudden drop in temperature caused the skin on my heel to crack open, which is not uncommon. However, because I cannot feel pain in that foot, I wasn’t aware of the crack. One morning I woke up and my foot felt different…different than my normal. My ankle felt like it had been bit by something and was having an allergic reaction. It felt hot and stiff and as the day progressed, the redness, swelling, and stiffness only increased.

Once I discovered the crack and realized what was actually going on, I knew that I needed to have it looked at immediately. While a crack like this in a normal foot would be painful and a nuisance at most, in my feet I knew it could quickly spiral into an infection that could put me in the hospital, surgery, or even an amputation if it wasn’t treated early enough.

After obtaining a last minute appointment with a local podiatrist and confirming through X-Ray that the infection had not spread into my bones or muscles, I was put on 24-48 hours of bed rest and two strong oral antibiotics, with the back-up plan of going to the ER for IV antibiotics if there wasn’t immediate improvement. Thankfully my body wasn’t resistant to the oral antibiotics (a risk because of how often I am on them for UTI’s from self-catheterizing) and the infection began to subside.

While the infection cleared, I began to have burning and stinging around my stoma (the opening in my abdomen where my small intestine “hangs out”). Since my digestive system now gets rid of waste before it goes through my colon, everything comes out in a semi-digested, watery state. The colon is what absorbs the majority of water and left-over nutrients, so when waste comes out of my stoma, there are still active digestive enzymes that can eat away the flesh on my abdomen. My body has adapted to this change, but when the oral antibiotics began to flush through, it aggravated my skin creating a 1/4″ of raw, open skin around my stoma. Needless to say it hurt quite a bit. It also made it difficult for my bag adhesive to stick, so while my infection was clearing, I now had a new issue at hand to deal with. On top of all of this, my right heel developed a crack in the skin as well.

All of this, because of something that is so “normal” for most people.

I tell you all of this in order to give you a glimpse into why I suddenly connected with this crippled man whose feet and ankles had failed him.

Out of empathy, I could imagine his excitement as he felt warm blood rush through his veins and strength surge into his feet that had felt “dead” for so long. But even more than that, I know the prolonged joy that would have come over him because not only did he experience healing, but he encountered the Healer himself.

Singer/Songwriter Natalie Grant had the lyrics to one of her songs in one of her Instagram posts. It said,

“Help me want the Healer more than the healing, Help me want the Savior more than the saving, Help me want the Giver more than the giving, Help me want You, Jesus, more than anything.”

Through this man’s story and because of the empathy I had toward him, God nudged me with a truth that I needed to be reminded of. God wants me to know Him and desire the healing of my soul more than the healing of my body. No, it’s not wrong to want physical healing, and I am so thankful that my feet are beginning to heal. But that can’t be my focus.

If you look back to the first few verses in this story it says, “When he saw Peter and John about to enter, he asked them for money. Peter looked straight at him, as did John. Then Peter said, ‘Look at us!’. “

This crippled beggar noticed Peter and John come into the temple, but his gaze must have shifted from their faces downward to the earthly possessions he could get from them, because Peter tells him to look at them. I imagine that he was also looking down, ashamed of what he was. I think Peter wanted the man to look at him in order to see the power of the risen Christ that was living in him. He knew that ultimately that is what the man needed in order to be healed and to restore his dignity.

So often, I let my gaze shift downward and I forget that growing my relationship with Jesus is my ultimate goal.

If you continue reading Acts chapter 3 and into Chapter 4, you come to verse 4 that says,

“But many who heard the message believed and the number of men grew to about five thousand.” Acts 4:4

The “message” that this verse is referring to is the message of the gospel that Peter and John were able to then share with the people who “were astonished and came running to them…” as a result of  witnessing the miraculous healing in this beggar’s life.

If this man had refused to shift his gaze upward to Peter and John, he may have encountered a small amount of money…maybe enough to buy a meal to temporarily satisfy his hunger…but he would have missed the opportunity to encounter the Holy Spirit who would reset the entire course of his life and in turn, touch five thousand more hearts that day.

I don’t want to miss an opportunity like that because I’m looking down.

Do you?

-Adri

Chronic Hope

(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

 

 

 

Resolutions- “Whatever’s in front of me, I’ll choose to sing Hallelujah”

My “stats” page just informed me that it’s been three months since I posted a new blog entry here.

It doesn’t surprise me. I’ve been talking…crying is more like it… with God about a few things and have purposefully avoided writing. Not because I am scared to let you see into my brokenness, but because ultimately, what God has to say about it is what matters.

Sometimes I need to just stop and be quiet and listen to that voice inside of me that I know is God-breathed, because nothing in and of my human-ness would have formulated that thought in my head.

Promise came home from school, after returning from Christmas break, and announced (while standing on her chair, as she does with most of her “announcements”) that while discussing what “resolution” meant at school, she told her whole class what my New Years Resolution was.

My heart started racing. I broke out in a cold sweat as I frantically replayed in my mind, every resolution that I had mindlessly rattled off (serious or otherwise) over the past week. I’m not big on New Years Resolutions, but I am big on jokingly making them up.

Oops.

(Lesson learned. Promise is more social in class than I thought she was. I have no idea where she gets that.)

After coming up empty on what Promise could have possibly shared with her entire class, my anxiety was calmed as she said, “Oh you know Mommy, the one about getting an alarm clock and not keeping your phone on your nightstand.” *Cue a collective sigh of relief*

As is evidenced by the time stamp on this post, I am failing horribly at this “no electronics in the bedroom” resolution.

In the days and weeks that have followed that announcement, God and I have been having some more serious hear-to-heart talks about resolutions.

I’m not sure if it’s the fact that in 2 minutes I am turning 31, or if subconsciously my body just knows that it’s getting tired, but the weight of my health has been unusually heavy at the start of this new year.

I’ve struggled more than I ever have before with seeing friends and acquaintances experience physical healing in their lives, while my situation remains unchanged…if not worse. I’ve silently cried out the, “but why not me, God?” question repeatedly in my head.

If anything, I feel like my faith in God’s power to heal me is more confident now than it has ever been.

And the only answer that I’ve gotten is that that is not God’s plan for my life right now. Is he capable? Yes. The same power that raised Jesus from the dead, now lives in me. Of course he is capable. I believe that with my whole heart.

As my friend, Jill, so wisely shared with me a few months back; God has healed me. I can’t think of myself as being excluded from his healing. He’s healed me to the point that he knows I needed to be healed in order to accomplish his purpose for my life.

I am alive. I am walking. I still have my legs, as cumbersome as they may be. That is all a certain extent of healing that God has allowed to take place in my life.

It’s just not healing on my terms. Which is where faith and resolve come in.

The lyrics of this song by Bethany Dillon hit me hard the other day as the spilled out from my Pandora station while driving;

“Who can hold the stars
And my weary heart?
Who can see everything?

I’ve fallen so hard
Sometimes I feel so far
But not beyond your reach

I could climb a mountain
Swim the ocean
Or do anything
But it’s when you hold me
That I start unfolding
And all I can say is

Hallelujah, hallelujah
Whatever’s in front of me
Help me to sing hallelujah
Hallelujah, hallelujah
Whatever’s in front of me
I’ll choose to sing hallelujah

The same sun that
Rises over castles
And welcomes the day

Spills over buildings
Into the streets
Where orphans play

And only you can see the good
In broken things
You took my heart of stone
And you made it home
And set this prisoner free

Hallelujah, hallelujah
Whatever’s in front of me
Help me to sing hallelujah
Hallelujah, hallelujah
Whatever’s in front of me
I’ll choose to sing hallelujah“

Songwriters: Leonard Winston Dillon

© Kobalt Music Publishing Ltd.

And so as I step into another year of living with all of this, my resolve is that “whatever’s in front of me,  I’ll choose to sing hallelujah”.

-Adri

 

 

The Frustration of Forced Rest

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

Top Ten Ways a Disability Prepares You for Motherhood

Recently, I was asked to write monthly for a blog called MKE (Milwaukee) Moms Blog. The site is a local resource for moms in the Milwaukee area; a place to find support, advice, and connect with other women both through screens and in real life. You can learn more about the site by clicking here. It is a sister site of a nationwide site called City Moms Blog Networks. If you don’t live in mke, you should check it out and see if they have a site in your city!

Writing for MKE Moms Blog has proven to be a fun adventure thus far and provides outlets for me to write about topics other than my pain (because believe it or not…my life does not revolve completely around my disease) and to use humor in my writing. Humor has been key in getting me through so much of the pain and so it’s fun to be able to share a slice of that.

My first post, “Top Ten Ways a Disability Prepares You for Motherhood“ was featured on the site yesterday. As medical technologies progress at the rapid rate that they are, we will continue to see an increase in women with a wide array of abilities (or disabilities) enter the mommy community. Hopefully this post will shatter some of the pre-conceived notions you might have about parenting with a disability. While there is no doubt that it comes with challenges, I’ve found that so much of what I’ve experienced has prepared me for motherhood better than any parenting book ever could have.

You can also read my bio and get to know the other (amazing) contributors by clicking here.

Happy Parenting!

-Adri