I have lived with Juvenile Rheumatoid Arthritis (JRA) for 43 years. I was never angry that I had the disease nor felt sorry for myself at any time during my childhood no matter how hard it was to walk, get dressed, turn a doorknob, or get my education. My mom made sure I always remembered that while my life may have been difficult at times, there was always someone who had more difficult trials.
Years later, when I learned my baby niece was diagnosed with JRA, I was angry for the first time. I was in college and I vividly remember the night my brother called me with the horrible news. The ringing phone seemed to whine impatiently, as I stumbled getting out of bed. “Hold on,” I said under my breath, as I clumsily made my way through the pitch-black dorm room to answer it. “Who could be calling at this hour,” I groggily said to myself. The red light of the digital alarm clock pierced through the darkness and I could clearly see that it was 10:20 at night.
Being a typical college student, I was usually up until one or two o’clock in the morning, but not because I was studying. Rather, I was watching TV or talking to my friends. This particular night, I decided to go to bed early – 10:00. I wasn’t really tired, nor did I have any urgent studying to do or papers to write. However, my friends did, so no one could hang out, and there wasn’t anything interesting on TV to watch either, so out of pure boredom, I went to bed.
I managed to pick up the phone on the third ring. “Hello,” I answered in a sluggish tone. “Hi,” my brother, David replied. I knew something must be wrong because, while he called me frequently to check on me, he never called after 8:00 in the evening. His voice reflected sorrow as he said that his little girl, my then ten-month-old niece, had been diagnosed with Juvenile Rheumatoid Arthritis.
I felt like someone had grabbed my throat and was choking me. I was suffocating with anger, and for the first time in my life, I was mad at God. He (God) had no right to allow an innocent baby to have to live her life in pain. JRA was something I had dealt with since birth, but Diane was different – she was my baby niece.
There was so much I wanted to say to David, but the tension from my ire was hurting my head and muddling my thoughts. The only thing that would come out of my mouth was, “I’m sorry, so truly sorry.” I also told him that if he ever needed to talk to someone, he could call me anytime day or night.
I knew the best person he and my sister-in-law, Claudia, could talk to would be Mom. She would know exactly how they were feeling. After all, she was an experienced parent of a child with JRA. I was living proof of that fact. I was diagnosed at four months old, so by the time I was 21, Mom was well knowledgeable about the disease. She would be able to sympathize and educate David and Claudia.
Years passed quickly and the devastation faded, but not the anger. Mom was able to give David and Claudia the support and advice they needed until she passed away in 1991. The first few years the attention was mostly focused on them because Diane was still too young to ask questions or understand much about the disease, but one day Diane became old enough to ask questions about JRA.
She wanted to know, “What is Juvenile Rheumatoid Arthritis?” “Why does it cause pain? And, “Why me?” I knew now I could best answer Diane’s questions. I knew I could help her face her fears and the “Why me?” of JRA. I decided to answer her questions honestly and openly. I wanted her to know she had the power to not allow Juvenile Rheumatoid Arthritis to scare her, embitter her, or make her hate her physical appearance.
One night, when she slept over at my house during summer break, we stayed up until three o’clock in the morning talking. Diane told me sometimes she would find herself angry at God because He gave her JRA. I told her that what she felt toward God was normal because He does seem to be the easiest one to blame. I also admitted that I too had been angry with Him the day her daddy told me she was diagnosed with JRA. I told her that even though I had been so angry with Him, I knew it wasn’t His fault for either of us having the disease.
I told her we always had to remember that God had blessed us with loving understanding parents, siblings, and each other. Instead of either us being mad at Him, we should be thankful for all we have and all we can do. For instance, I explained, we can go to the park and swing as high as anyone else on a swing; we can ride bicycles and we can dance – and quite well I reminded her.
I told her not to forget that she could even rollerblade and how silly I would get when there was a carnival around; I loved to brave the amusement rides. I also told her that the crafts she worked hard on for hours were beautiful and creative masterpieces. “We are truly blessed, aren’t we?” I asked. Diane agreed.
“You know, Diane, one of the greatest ways I am blessed is that you are my niece.” I told her I could confide in her about the way I feel about JRA, and that I knew she would understand. We cried together during that early morning talk, as we had often felt alone in dealing with all the emotions about having JRA. It was good to know we had each other, so the tears of relief and joy easily began to flow.
I knew a part of me was in Diane and a part of Diane was in me. It was the part that wasn’t going to let the anger control our lives ever again. It had been a long night, but worth every second of lost sleep. So much had been gained – friendship! We now had a bond that only we could understand. I let my guard down that night and actually wept, which was as rare as finding a black pearl in an oyster. Every salty tear that warmed my cheek brought joy to my heart, as I wasn’t crying for what I didn’t have, but rather for what I had – Diane.
Why Diane? Because I truly believe God has a special plan for her, and maybe some day it will be that she will hold, talk to, cry along with, pray for, listen to, and love a child with Juvenile Rheumatoid Arthritis – someone as special as she is to me.