The Moment I Understood

I believe when a person has a chronic illness, there comes a pivotal moment when they come to accept the fact that barring a miracle, they will live with the illness the rest of their lives. 

As with most children, I was resilient as a little girl. The infections and fatigue I had to constantly deal with didn’t damper my spirits or excitement towards the things I was able to do.  Oh, I realized I wasn’t able to function like most kids my age, but I was oblivious to the extent of my limitations. 

I was 12 years old when I finally understood the impact my disease would have on my life. What might surprise some is what lead to this realization didn’t come from being severely sick or having a bad infection I couldn’t recover from. No— this realization came from experiencing a small taste of what it was like to be completely healthy and then having that lifestyle come crashing to an end in one single devastating morning.

When I was six years old, my doctors realized  the infections and weakened immune system were not things I would grow out of as an adult. The cause of these illnesses was due to a primary immune deficiency, complicated by autoimmune hemolytic anemia.  The cause of the disease was unknown, but a huge factor of the illness was my spleen was severely enlarged.  A normal spleen rests inside a persons left rib cage.  My spleen engulfed my left rib cage and extended down to my hip bone and over to my belly button.  My doctors always had a concern it would rupture.  The least little bit of impact to my left side could damage the organ. However, my specialists determined without knowing what was causing my disease, it would be unwise to remove the enlarged spleen, because with it gone, whatever was ailing it could transfer to the liver.  The con to this decision was if my spleen did rupture it could create many unknowns and immediate serious problems.   Of course dealing with an enlarged liver would be entirely more dangerous than living with an enlarged spleen, so my parents agreed to my doctors’ recommendation to leave the spleen in tact. 

The next six years I lived with this enlarged spleen and it dictated what I could and could not do.  I couldn’t play sports for fear a ball might hit my left side or an opponent might slam into me, which made me a little sad because I loved playing sports. Riding a bike without training wheels was out of the question because I might wreck and the handlebars could fall into my enlarged spleen. Thankfully, I was oblivious to the fact of how unusual it was when I was finally allowed to learn how to ride a bike without my training wheels.  Ironically, I learned with my cousin who was three and a half years younger than me. Playing baseball with the neighborhood children was prohibited because they might swing the bat into my stomach.  When neighborhood kids would ask if my sister and I could play with them, we’d have to tell them no and they didn’t understand when we explained. When my cousins and I would play rough every adult in the room was shouting at them to watch my spleen. Eventually, my parents, aunts, and uncles would get too nervous and ask us to play something quiet. 

 My parents understood how these restrictions could make me feel trapped, so they tried to allow me to do some of these things in a “protective bubble” with only my father and sister since they knew how crucial it was that nothing came into contact with my left side.  But even those precautions didn’t always keep me out of danger.  One afternoon my sister and I wanted to play ball out in our yard.  I was about nine and she was 11.  We begged our dad to play with us, which didn’t take much begging because we had our dad wrapped around our little fingers. 

My sister and I had several turns at bat with our dad throwing the ball to us.  My sister was taking a turn with the bat and didn’t realize how close I was standing behind her. She swung back hard and sharp, the bat connecting hard with my left side.  We were all so scared my spleen might have ruptured.  My sister was the most scared of all, I actually think she cried more than I did. She was my biggest protector and defender and to be the one who hurt her baby sister devastated her. 

My mother called me doctor at Cincinnati Children’s and he was furious over the chance we took.  He insisted I be taken to our local hospital for my spleen to be checked for rupture.  If it was, I had to be rushed to Children’s for emergency surgery.  Thankfully, my spleen suffered no damage from the impact of the bat.  Unfortunately, the incident caused the precautions my parents created for my safety became stricter.  What we didn’t realize damage was going to come to my spleen and it wouldn’t be caused by any person.

One night in February, a few years after the incident with the bat hitting my stomach, my sister and I were spending the evening with my grandparents because our parents were at a Valentines Day gathering.  A night with our grandparents was one of our favorite things to do and this particular night was very special because our grandma allowed us to try on our mother and aunt’s wedding dresses.  We timed it so we put them on right before our parents arrived to pick us up.  Our parents’ reactions were exactly what we wanted.  They had us stand in front of the fire place and pose for pictures when all of the sudden I had a sharp pain in my left side. I clutched my stomach in surprise, and of course my mom immediately noticed like all mothers do.  “What’s wrong?” She asked “I just had a sharp pain in my side,” I replied.  “Hmm,” she said with concern, “We’ll have to keep an eye on it.”  The days passed and I had no more pain, which made us believe it was just a fluke. A couple of weeks later we realized it was no fluke, but something more serious. 

One Sunday night at church, my pastor asked all the youth to come up to the alter for something special.  It was almost 17 years ago, so I don’t exactly remember why the youth was at the alter, but what I do remember was the horrible pain in my stomach.  I left the other teenagers in tears to go find my parents.  They took me back to one of the classrooms to find out what was wrong.  I remember clutching my stomach, and told my parents my spleen hurt.  Rarely seeing me cry when I was in pain, this caused my parents real worry.  I remember my Mom frantically telling my Dad to pray right away.  He did just that and the pain subsided some.

The next day we made the 2-hour trek to Nationwide Children’s to see my hematologist.  Severe pain in my left side was serious and shouldn’t be taken lightly.  My hematologist was gravely concerned, knowing something very wrong.  A cat scan was done and it showed my spleen was inflamed and irritated, the answer to the pain.  My doctor explained the disease in my body had done a number on my spleen and he anticipated it would be only a matter of time before the organ would soon begin to infarct— meaning it would begin to blood clotting and the tissue of the organ would die. If this happened it wouldn’t matter the implications it could cause to my liver, it would have to come out. My specialist’s words proved to be prophetic because two weeks later, my spleen began to infarct.  It had to be removed. 

March 20^th, 2001 was the big day.  It was surreal to me.  This organ I had to protect for the past six years was finally going to come out.  In the past I had had sinus surgeries and ear tubes put in my ears, but this would be considered major surgery.  Due to my spleen being incredibly large, it couldn’t be removed by laparoscopy, I had to be cut open.   The morning of surgery, my stomach hurt so badly I couldn’t take a deep breath.  I was scared, but my parents were terrified.  Before we left the hotel to go to the hospital, my parents, sister and I gathered to read some scripture and pray.  My dad decided on the 23^rd Psalm.  Half way through the passage, he broke and began to cry, which caused everyone else to cry.  A supernatural strength entered my soul and I took the Bible from my father and continued to read where he left off. 

The surgery was a success and the surgeon explained the reason I couldn’t take a deep breath was because my spleen had attached itself to my diaphragm.  I spent five days in the hospital and though the soreness took some time to resolve, I healed very well and felt great. Two weeks after my surgery I had a post-op appointment with my hematologist to check my labs to see how my immune system had fared with the stress my spleen caused my body.  My doctor reviewed my labs and to his surprise they were perfectly normal.  Not one lab was out of range.  He relayed the amazing news to my Mom and I.  This meant my primary immune deficiency was caused by my diseased spleen, and without it, my disease was cured.  I was healed!  I no longer had any medical restrictions, I wouldn’t need to come for another follow-up visit for another 6 months.  If everything was still good in 6 months, my appointments could change to yearly.  As far as my doctor was concerned, I wouldn’t be needing him anymore.

The joy I felt when I left my hematologist’s was indescribable.  Gone were the days of missing 75-100 days of school.  I would have the energy and stamina kids my age did.  I would try out for the basketball, softball, and tennis teams at my school.  I could be involved in any club I wanted too and be as active as I wanted to be in life.  No longer would my life be fragile, but strong and healthy.  Nothing could stop my hopes and dreams now.

The next six weeks were idyllic.  I was able to experience what it was like for my sister and friends who were healthy and I couldn’t get enough of it.  Nothing could have prepared me for what was about to take place.  One Sunday morning I woke up to get ready for church.  I was so nauseated and didn’t feel good at all.  I told my parents I was sick to my stomach and they assured me it was probably just my sinuses.  All I needed to do was move around and the nausea would subside.  I tried to do what they suggested, but it was no use, the vomiting began.  My sister called for my parents to come quick and I’ll never forget the looks on their faces. Their worry and concern was evident as they stood outside the bathroom whispering.  I had no idea what was happening, all I knew is I felt terrible and the sudden fatigue I was feeling felt like chains weighing me down.

 I went back to bed, there was nothing I could do but sleep.  My Mom stayed home with me, while my Dad and sister went to church. After church, my parents’ worst fears were confirmed.  I was indeed jaundice and something was obviously very wrong.  My parents took me to Children’s Hospital and it was discovered my hemoglobin had dropped very low and every blood count that had been normal six weeks before were about as bad as they could get. 

I was admitted into the hospital and given high doses of steroids to regulate my immune system and elevate my hemoglobin back to normal. I was in the hospital for eight days. My disease was not only still active in my body, but it was raging. I was devastated. I remember thinking in those eight days this wasn’t supposed to happen.  I was supposed to be healed, my spleen was gone and that was supposed to be the culprit for everything. What about my plans?  I was going to get perfect attendance in school.  I was going to be a stellar athlete everyone talked about.  I would be involved in clubs and extracurricular activities.  My body would have been able to handle my dream of going to med school and becoming an obstetrician.  How would those dreams come true now?  The answer was simple and yet cut my heart to the quick.  These dreams wouldn’t happen.  For the first time in my life I truly understood I had a chronic illness and unless God healed me, I would deal with it for the rest of my life.  The weight of this realization was such a difficult epiphany for a 12-year-old to come to terms with.  I didn’t understand God’s plan or reasoning, but one thing I knew was the only thing that would sustain me would be His strength to keep living life to the fullest as much as I was physically able too.

Eventually I saw I could have goals and dreams despite my disease.  They may not be what I thought they would be, but no less admirable or inspiring.  I learned I could have a purpose and an impact on this world by having a positive attitude while living through pain and heartache.  Instead of letting my disease define me, I defined my disease by deciding it would give me a voice and story to encourage others to keep on living through their difficult circumstances.

I believe this season in my life is why I wanted my disease to be called MAGIS Syndrome.  This word means, “More,” in Latin and it took me some time to understand I was More than my disease.  Anyone who gets the news they have MAGIS Syndrome, I want them know right away and never forget they are More than their disease.  There will always be mountains to climb, but with God we can climb them.  It might take some time to scale them, but take heart in the fact, God created us to be more than our mountains.