All Things Were Made By Him, and Without Him Was Not Anything Made

         I saw a Pinterest quote that said, “You never know how long your words will stay in someone’s mind even long after you forgotten you spoke them.”  Whoever thought of this saying came up with profound words.  I think this quote is even more true for people who have disabilities.  A healthy person with no physical deformities has insecurities about their bodies and the way they look.  Someone battling disease not only has the normal insecurities everyone has, but they also worry about the visible deformities everyone can see.  Most of the time it’s more noticeable to those of us who have the disease than it is to others, but still, the questions plague us: What do people think of me?  Do they find my abnormalities weird?  Do people think my deformities are gross?  Will a man ever find me attractive?  Do people pity me?  The questions go on and on.  Then what adds to these questions is when people unintentionally make hurtful comments because they don’t know what else to say or how to intelligently ask you about it.  As the quote penned perfectly the words stay on our mind long after the person forgets they even spoke them.

         When my illness first came to a head when I was six years old, there was much trial and err as to what would keep my immune system stable.  The one medication that did this was prednisone— steroids.  Steroids is a “double-edged,” sword kind of drug.  It did wonders to keep my body strong and my immune stable, but it caused a host of other issues as well.  The medication caused disease in my joints called Avascular Necrosis which destroys the cartilage.  This disease would eventually lead to my getting a total knee replacement at the age of 19.  It also caused excessive weight gain to where I became unrecognizable when I was on high doses. The worst side effect from steroids I received was a tremendous number of warts.  Not just a wart here or there, but in my nail beds, on my fingers, in the bends of my arms, on all parts of my legs, on the bottoms of my feet, and worse on my lips, forehead, and underneath my eyes.  It was humiliating and embarrassing.  While my disease caused my body to be prone to the wart virus, the steroids multiplied warts.  I was always so self-conscience, trying to hide as many of them as I could.  I would get the questions, “Have you been playing with frogs?”  or “Are they contagious?” both questions were not compliments, but things people asked because they didn’t know what to ask.  I understood this, but it didn’t make me feel any less of a freak of nature.

         When I was in the fifth grade, I tried making the best of my situation and using warts to my advantage.  I decided they would be my test subject in the science fair.  I chose three over the counter wart removers and put them on my warts to see which wart remover worked best.  None of them worked well, but I did manage to get third place in my science fair.  But science fair or no science fair, when my surgeon told me he could remove my warts during my splenectomy and gall bladder removal, I was beyond thrilled.  The way he did this was by cutting and burning warts off.  He cut and burnt them so deeply so I would have a better chance of them not returning, but it also left third-degree burns on much of my body.  I was burnt so badly I had to be admitted on the burn unit after my surgery. 

My mom had to be taught how to change my dressings twice a day just like a burnt victim would have too. After some surgeries, I even resembled a mummy because my hands were wrapped, the bends of my arms were wrapped, my feet were wrapped and the bends of my legs were wrapped.

It took about six weeks to heal, which caused me to be out of commission for six weeks of doing nothing but sitting.  It was a miserable six weeks, especially since I found walking on the wounds on my feet caused excruciating pain, so between my dad and sister, I had to be carried everywhere.  When my dad went to work and my sister went to school and I needed to go to the bathroom, my mom would help me on our desk chair with wheels and wheel me down our hall way. 

My whole family and I had to work together to get me through the six weeks— there was a lot of awkwardness to have to be carried everywhere, but my dad, mom, sister, and I laughed our way through it.  In my mind, the awkwardness was totally worth it not to have warts anymore.

         And for the first month, the warts were gone and it was wonderful.  No more stares, no more questions, and I didn’t feel like I had to hide my body.  But once the month was up, warts not only began coming back, but there was extensive scarring from warts that didn’t come back.  It was such a disappointment because I truly thought the surgery would take care of warts.  I could handle the scars even though they were somewhat embarrassing, they weren’t as noticeable as warts. They became even worse every time I was put on steroids.  My disease plus the steroids was a double whammy warts couldn’t resist.  Whenever my body’s immune system became stable and the dose of the steroids was lowered, I thought this is it, I can have another wart surgery and this time it will work.  You see it wasn’t only the humiliation of having warts making my choice to have the surgery over and over, but the pain of walking on warts that returned on the bottoms of my feet made the decision for me as well.

         However, after each surgery, warts eventually came back no matter what I did.  Thankfully, most of them did stay off my face and for that I was grateful, but they came back in full force everywhere else, which only accented the scarring from the other surgeries.  It was so difficult, but I had to learn how to come to terms with the fact this would be a part of my body.  Just when I would get over the insecurities and forget the warts, someone would have a comment.  No matter how innocent it was, it still hurt deeply. 

         One memory that comes to mind from time to time was when I was in my junior high English class.  The teacher was done with her lecture so we were able to hang out until the bell rang to end the period.  I was sitting on top of the heater with my friend and a guy in our class came over to join us.  We chatted for a little bit and then he made one of the most hurtful comments ever said to me, “Whitney, you should be in the Guinness Book of World Records for having the most warts.”  I don’t know whatever possessed this guy to think saying this was okay.  He wasn’t malicious or mean person, but for some reason, he thought this would be funny or lighthearted.  My friend verbally let him have it and somehow, I managed not to burst into tears. The questions came again in full force: Does everyone think this about me? Do people find me ugly if they think I would be able to be in the Guinness Book of World Records for warts? Do people feel sorry for me?   

Once again, I had to overcome the insecurities and negative thoughts I had about myself and it took some time.  As I got older I had to realize the scarring and warts needed to be looked like a part of my story and reminders of the blessings and gifts God had given me. I did get to that point, with insecurities rising every now and then since I’m human, but I eventually learned to not let those deformities define me. 

Warts would have been enough to handle and overcome, but another battle came to head I had to suit up against the fight for and that came in the form of psoriatic arthritis. Much of my life I dealt with arthritis and the joints affected were classic symptoms for psoriatic arthritis, but I never had psoriasis.  This all changed when I turned 22 and the psoriasis patches appeared.  I had them on my hands, my legs, and my arms and there were several of them in the form of red patches.  I went full circle to wanting to cover my deformities again.  It was terrible to feel like I had to cover my arms and legs, especially in the summer.  The patches got even worse when I was sick. Now I wasn’t only dealing with warts, I was dealing with psoriasis.  I felt as if I were a walking and talking deformity.  Everyone had to notice me, not in a good way, and the following event confirmed my feeling.  I was in college and I went to the student center at Asbury where my friend worked.  We were going to have dinner together, so I decided to sit with her the last part of her shift before we went to the cafeteria.  While I was there another friend of my friend who was working came to see her as well.  As we were sitting there talking she suddenly grabbed my hand that had a patch of psoriasis on it and exclaimed, “Oh my goodness!  This looks just like the scar off of Fight Club!” I was mortified.  I didn’t even know how to respond so I just smiled awkwardly and said nothing. My friend was shocked as well that her friend would say something like that to me and smiled compassionately and apologetically at me.  Her friend, however, didn’t notice my reaction because she proceeded to humiliate me even more.  A few minutes after she made the comment to a group of her guy friends that came to talk to her.  Without asking my permission, she grabs my hand, pulls it forward so the guys could see it and asks “Hey, what’s this remind you of?”  The guys respond with, “Oh the scar from Fight Club!”  At that moment, my only wish was for there to be a trap door I could pull to disappear from the student center.  I had to fight not to fall apart in front of everyone in the student center and again managed to smile awkwardly. My gracious friend noticed this and was furious with how I was just treated.  She grabbed my hand and told everyone we were leaving.  As we walked out she put her arm around me and said, “You are wonderful,” which was so sweet of her because at the moment I didn’t feel wonderful at all. 

When I finally got to my dorm room I let the tears flow.  I was so hurt and had never felt so unattractive.  I felt like I had been an oddity put on display.  Is this what everyone had thought of me?  I had worked so hard to overcome my insecurities and negative thoughts of what people thought of me and now they were surfacing again.  In my pain, I picked up my Bible to get some comfort.  I opened it up to the first chapter of John and my eyes immediately went to the third verse which says, “All things were made by him was not anything made that was made.”  I couldn’t believe the precious and much-needed reminder God gave me at that moment.  It was as if He whispered to my broken heart to not be sad or worried because He made me and it was in His image.  In His eyes, I was a lovely and priceless treasure and those things were all that mattered.  My true friends and people who wanted to get to know me wouldn’t find my worth in my appearance or how my skin looked, but my worth would come from my character and what was in my heart and that was what would attract people to me. 

I think this is such an important concept for people with diseases to grasp.  Yes, the hurtful words people say to us may stay with us for a long time, in fact, it will probably stay with us forever, but those words can’t define us. Instead, they need to drive us. We have so much to offer and give others with the strength and the perseverance our trials build within us.  If we do this, the world won’t see our deformities, because they will have no choice but to look at the kind of person we are. Our deformities may make us feel inferior to others at times, but they must not allow us to act inferior.  Instead, we need to stand up tall with self-respect and confidence, boldly showing the world our worth comes from the One who made us. 

Greater Still The Calm Assurance…This Child Can Face Uncertain Day Because He Lives

There is one verse in the song, “Because He Lives,” I absolutely love. The words are: “How sweet to hold a newborn baby, and feel the pride and joy he brings, but greater still the calm assurance, This child can face uncertain day, because He lives.” I wonder if that long ago night when Mary held Jesus, she knew this baby was the baby who would give the world that calm assurance. I believe she knew because the Bible says multiple times, “But Mary kept all these things and pondered them in her heart.”

Similar to Mary, when my mother held me in her arms as a baby she knew in her heart my life wouldn’t be an easy one. My mother recently confided in me when I was an infant, a crippling fear would grip her heart at the thought of raising me, a fear she never had with my sister when she was a baby. Call it “mother’s intuition,” but she knew in the depths of her soul I would face the “uncertain day” the song talks about. 

It was as if the enemy wanted my mother to live in fear of raising me, because that’s what I’d learn from her; how to fear, not to trust in God. Thankfully, God helped my mother overcome this fear, and she received the calm assurance the song promises. God knew it was imperative my mother gained this calm assurance, so she could instill it in my character, because this calm assurance would be what would get my family and I through the darkest and most devastating storm we would face 23 years later.

When I left the restaurant to go home from college for my bowel surgery, I had an unsettling feeling around the corners of my heart.  For the first time in my life I wasn’t completely confident things would be okay for this surgery.  There were several reasons that attributed to these feelings.  This surgery was not like any other surgery I had been through before.  During the surgery to correct the twisted bowel, an endoscopy and a colonoscopy would be performed and I would wake up with a NG tube in my nose to pump my stomach and allow my bowel to heal.  So two days before my surgery I had to begin a soft diet to prepare my system for the colposcopy prep I would begin the next day, then next afternoon I started to drink that dreaded colonoscopy prep and was no longer allowed to eat before my surgery.  

D-day cam on Tuesday December 13^th, 2011 and thankfully the surgery went very well and I was told I would remain in the hospital on the surgical unit for three to four days. While the NG tube down my nose and throat is an experience I don’t want to repeat again, I was able to make the best of it. The most difficult aspect was I wasn’t allowed to eat and the NG tube couldn’t be removed until my bowel healed.  When I was finally allowed to eat, it had been five days since I had consumed any solid food.  The day after my surgery, my surgeon allowed me to eat popsicles every four hours with my NG tube in and let me tell you, I lived for that popsicle.  When you aren’t allowed to eat anything except a popsicle, which the NG tube pumped from my stomach about 30 minutes later, that popsicle becomes like an eight course meal. 

Finally, on Friday my bowels showed signs of healing and I was able to eat broth.  Once it became apparent I would keep the liquid down, I was allowed to try solid foods on Saturday, and I chose, drum roll please…cereal and it was glorious.   This meal agreed with my stomach as well, so the last step for me to be released to go home was for my labs to be checked one last time.  If they were good, I would be discharged.  My labs were taken on Sunday and while my hemoglobin was on the low side, no one thought anything of it other than my body reacting to the trauma it had been through and it would eventually go back to normal.  Little did we know at the time, an “uncertain day,” was on the horizon for my family and I. 

I went home on Sunday afternoon and everything began going down hill. Within the next 24 hours, I felt myself wilting and my body shutting down and my family watched it happen right before their eyes.  All I could do was sit and lay, it took all of my strength just to move.  My dad got home from work just in time Monday evening to hold me steady and from collapsing in the toilet as I threw up.  Immediately after I got sick, my skin turned a golden yellow hue and my hands, gums, and reds of my eyes devoided of their color.  These were all signs my hemoglobin was not going back to it’s normal range, but it was continuing to drop.

My mom called the hematologist on call at Nationwide Children’s and we were told to get to the ER at Children’s as soon as we could get there.  So 24 hours after I was released from the hospital for my surgery, I was heading right back there again.  That Monday night, Nationwide Children’s ER was insanely busy. I was triaged and then had to wait about two hours before I was taken back to a room in the ER.  While we were waiting, my mother share with me some exciting news.  She wanted to share it with me, but didn’t feel she could until this moment.  She told me how earlier that year, God had revealed to her, He was going to completely heal me.  Because of this she knew I was going to be okay.

I was finally taken back to a room in the ER and saw two Hematology fellows on call. The plan was to get an IV started, get my labs checked and go from there.  It took several tries to gain IV access, but finally one of the nurses was able to administer an IV.  Once we got my lab results back, we were all so surprised.  My hemoglobin wasn’t nearly as low as we thought it would be. It was actually in the high “8’s.”  What we didn’t know at the time was the results were a “false high,” because I was so dehydrated.  The level my hemoglobin was registering would not cause doctors to believe I needed a blood transfusion.  Fluids and steroids would be the best course of treatment. Unbeknownst to all of us that night, my hemoglobin was already at a dangerous low. You may wonder why it’s so important the hemoglobin level stays normal.  The hemoglobin is the part of the blood that controls the oxygen throughout the body and brain. When the hemoglobin is low, they body is lacking the oxygen it needs to stay alive. The hemoglobin count was supposed to be between 12-15. A low hemoglobin can be life-threatening if not treated properly.

It was about 1am Tuesday morning when the Hematology fellows decided to admit me.  Unfortunately, the hematology unit was full and wouldn’t be until Tuesday night before a bed would be available, so I would be taken to the surgery unit and my blood levels would be checked again Wednesday morning.  I could never fault the wonderful doctors at Nationwide Children’s.  They have always treated me with the most wonderful care.  However, each unit is focused on their specific specialty.  The surgery unit would monitor the specific progress of the particular surgery each patient had had.   For example, they would continue to keep track of whether the bowels are healing properly or if their sutures are mending well.  Watching for the signs of a low hemoglobin is something the surgery unit wasn’t used to doing.

Hindsight is always 20/20.  I don’t know if it was because I had run myself ragged trying to juggle all of my school work, final projects, and finals while battling severe stomach pain and extensive weight loss or if it was because of on top of the weight loss, I went five days without eating because of the bowel surgery and came home from college weighing 75 pounds. Or was it because I didn’t receive my IV treatment before my surgery that I usually took every six months?  But this was my 25^th surgery and I had always done so well with all surgeries prior, so no one thought for me to receive it as a boost before my surgery.  Whatever the reasoning was, it was no one’s fault that that Tuesday I began going down hill, very rapidly.  My situation went from bad to worse at such an alarming rate, the thoughts began going through my parents’ minds— Was the divine healing God told my mom He was going to give to me, was Him preparing all of us for my ultimate healing in Heaven?

That Tuesday my parents watched in a horrifying fog my body decline.  Every time I had to go to the bathroom my dad would have to carry me due to severe dizziness, an excruciating headache and so I wouldn’t pass out. All I was capable of doing was staring and sleeping.  My parents had no clue what to do or how to help me.  They knew I was getting sicker with each passing moment, but until a bed became available on the hematology unit, I was in the surgery unit to stay.  The protocol was in place and because of my parent’s exhaustion and shock over watching my body slowly fade they were at a loss at what to do.  I truly believe God knew this and He gave my parents the lifeline they so desperately needed. 

My hematologist came to my room that evening before he left to go home.  Technically, since he wasn’t the hematologist on call he would not normally come to see me, but I believe divine intervention was at work.  In the 12 years my hematologist had been my specialist, my parents had never seen him look at me this way and expression was hopeless.  I was as white as a sheet, blankly staring at him, unable to speak.  He looked at my parents and informed them I would be moved from the surgery unit soon and labs would be drawn the next morning. He felt we were to insist those labs be checked that night, not the next morning.  Before he left my room he hit my parents with this blow, “If she makes it through, we might have to consider a bone marrow transplant.”  When he left my room, my dad looked at my mom, “Did you hear what he said?  He said, “if she makes it.”  He doesn’t think she’s going to make it.”

Just as my doctor said, I was taken to the hematology unit and my parents asked for my bloodwork to be checked then instead of the next morning.  The hematology staff agreed to this and explained they were going to go ahead and give me my IV treatment in hopes of turning my immune system around. The key to receiving this treatment was getting my weight to know what dosage I should receive.  The problem was every time I got up I was nauseated, my head hurt, and I would get dizzy.  The opportune time came when I had to go to the bathroom, so while I was up they would weigh me.  My dad began to help me up and the movement was too much and caused me to throw up. The nurse and my mom began to clean me up and the nurse knowing I was a creative writing major asked me to tell him about some of my stories. As I began sharing with him, I went in and out of lucidity.  My mom said it was as if all the characters and plots of my stories became a jumbled confused mess in my head because what I was saying made no sense at all.

After I was cleaned up, my nurse began the process of trying to get my blood work.  It was next to impossible.  It was as if all my blood had dried up, because every stick of the needle produced no blood. And when blood was finally retrieved it would clot before it made it down to the lab.  Finally, the nurse who was able to access my vein Monday evening in the ER was brought in to try. She was able to get the much needed blood by raising my bed as high as it would elevate, hanging my arm over my bed, and squeezing my arm from my shoulder down to my fingertip to get the blood they needed.  The nurse ran the blood to the lab and while my parents waited for the results, my mother and father decided they would take turns getting a shower since they hadn’t showered in 48 hours and the other one would stay with me.  My mother went to the shower first, while my dad remained with me. 

Unfortunately, my father was with me when I was in the worst state of mind yet because my body was lacking so much oxygen.  There were times I didn’t know my dad, and when I did recognize him, I could not make my body respond to his pleadings to talk to him.  At one point he was so terrified, the only thing he knew to do was to begin to sing “Jesus Loves Me,” to me.  I remember him singing some of this, but when I did, it was as if I was having an out of body experience, he was floating above me, like I was dreaming it, but there was nothing I could do to acknowledge I heard him.

All of the sudden several doctors and nurses rushed into my room with the devastating news my hemoglobin was 3.  My dad ran to the bathroom my mom was showering in and told her she needed to hurry and get back to my room; my hemoglobin was 3.  My mom rushed into my room and exclaimed in dismay, “Her hemoglobin is 3?!”  As she uttered this statement, the two Hematology fellows rushed in and said, “No, it’s actually 2.8.”  “What are we going to do about getting her blood?” My mom said frantically, “Last time she needed to be transfused it took hours to find her a match.  We don’t have hours!”  The fellows looked at my mother with relief and compassion, “We ordered Whitney blood Monday night.  We already have it.” 

A few minutes later the ICU attending arrived in my room to access my condition to see if I needed to be transferred to ICU.  With all the commotion and the stress of the night, it was finally realized I should be receiving oxygen.  The doctor placed the oxygen tube in my nose and it was as if light bulb was turned on.  All the lucidity I had lost came rushing back because I was finally getting the oxygen my body so lacked.  My eyes flew open and immediately I saw my room held about 7-8 doctors and nurses.  My eyes grew stark with fear and my mother immediately noticed, “Whitney,” she said gently trying to help me remain calm, “You remember a few years ago when your hemoglobin went to 4.8 and it was serious?  Well it’s like that now.”   She stepped away to allow the ICU attending to examine me.  Thankfully, even though I was so sick I still had some wit about me, because I inwardly chuckled when the ICU attending leaned close to me and said, “Whitney, do you know your name?”  Of course the answer was an easy one.  Even though I was lucid enough to answer the questions, I was too fragile to remain on the hematology unit, so it was decided I would be transferred to ICU.  As doctor and nurses were transporting me they explained to my parents about the treatments they would be giving me. They would administer several blood transfusions, my IV treatment, and an IV antibiotic that could turn my body red from head to toe.  They shared with my parents that my blood pressure was 60/30, my pulse was high, and I was in grave danger of having a heart attack, therefore, it was imperative I didn’t have a reaction, because my body was hanging on by a thread and it couldn’t take anymore trauma.  My parents were crushed because what they knew that these doctors and nurses didn’t was up until this point I had always had a reaction to all of these treatments.  From all appearances, the disease I had battled my whole life was about to take my life.

My parents were ushered into the ICU waiting room so I could be hooked up to machines.  It was well past mid-night Wednesday morning so my parents thought it was strange the only other person in the waiting room was a man sitting at the waiting room computer.  ICU was completely full that night and there was a three-person limit in each room.  Usually, a waiting room is full and everyone becomes acquainted with each other because of the common bond they share of holding vigil for their sick child.  Nevertheless, my parents began calling people, begging them to pray.  The first person my mother called was one of her closest friends.  When she began to explain, the gravity of the situation came over her and she began to sob.  My dad took the phone from my mother to continue the conversation.  All of the sudden the man at the computer came over to my mother.  He stood beside her and my mother said the first thing she noticed was he had the clearest, bluest eyes she had ever seen.  “What’s the child’s name?” the man asked.  “It’s Whitney,” my mom told him.  He looked at her and said, “Well I’ll put her on The Prayer Chain.” He didn’t say I’ll put her on my church’s prayer chain, or he’d let his pastor know.  No, he said, The Prayer Chain, then he left the waiting room, and my parents never saw him again.  The other night that I was in ICU, the waiting room was completely full.

My parents are certain this man was an angel sent by God to give them the peace and hope they needed that everything was going to be okay, because for the first time in my life, I had not one single reaction to any of the medications I was given.  In fact, my body miraculously began getting better much quicker than medical prediction or reasoning to the surprise and delight of my doctors.  I was released from the ICU on Thursday morning to the hematology unit and Saturday morning on December 24^th, 2011 I was discharged to go home, receiving the best Christmas gift I could have ever wanted. 

Two weeks later I went back to Asbury to begin my last semester of my college career with all of my friends and in May of 2012, I graduated on time with my degree. 

After that devastating storm I never looked back and mom’s prophetic words of God’s healing began to unfold.  Since 2011, I have been on six mission trips with mission trip number 7 on the horizon; I’m now a Sunday School teacher at my church. Also every year, I have been able to work in VBS and be a worker at my church’s annual church camp.  God has opened so many doors for me I never thought would be possible.  My doctors are amazed at the change they see in my body and even they have had to admit I’m a miracle. 

I wonder though how different it would have been if my mom never overcame her fear of raising me?  I know without a doubt that Christmas season six years ago would have surely broken us.  Thankfully, my mother learned to trust in God despite the impending physical trials she knew I would most assuredly face.  When she finally overcame these fears she could hold me as a baby, having the calm assurance I would be able to face “uncertain day”.  I feel like it’s so fitting the most terrifying trial of my life came during the Christmas season.  For it was during the first Christmas season when Jesus came as a baby and it’s because of that baby I can face tomorrow, it’s because of that baby all of my fear is gone and that tiny little baby held my future.  Yes, today, tomorrow and in the future not only will I be able to be able to face “uncertain day”, but every day will be worth living just because He lives.