Early, that summer, we tried to visit the local amusement park. We purchased season tickets on a yearly basis. On first, and only, visit that year, Anthony was only able to walk halfway into the park. He was overcome by pain and weakness in his legs. He was so exhausted that he had to be carried out piggyback by my (then) husband. Anthony has not been back to the park again. It grieves my heart because he used to enjoy the park to the fullest. Now, he couldn’t walk the distance, nor could he tolerate being banged around on the rides. He quietly accepted the circumstances.<o:p></o:p>
Anthony began to complain of other symptoms (chest pain, sore throat, muscle and joint pain, headaches and extreme fatigue). He was frequently confused and frustrated when trying to explain his symptoms to his doctor. One day, after the doctor left the examining room, Anthony said to me, “I wish I could go to sleep and never wake up again.” I realized my son was full of despair. When the doctor returned, I told him what Anthony said and was promptly given a referral for Anthony to see a counselor. The counselor was helpful assisting Anthony in facing his fears of medical treatment. Once his digestive problems improved, so did his demeanor. <o:p></o:p>
When the new school year rolled around, Anthony attempted to make it to school again. His attendance was suffering. He was too exhausted to make it to school. Yet, he would sleep for an average of anywhere from 13-22 hours in a day. Finally, his teachers, school nurse and school counselor began to get concerned about the things they were observing at school. Anthony was exhausted all of the time. It took extraordinary amounts of time for him to travel between classes. He couldn’t remember to turn in work--even if they had done it together in class. The school nurse would send him home with low-grade fevers and swollen lymph nodes. I was relieved that someone else was seeing that something was wrong. I was truly at my wit’s end. Anthony, at this point, was 5’6” and weighed only appx. 104 lbs. <o:p></o:p>
Repeatedly, I took Anthony to Dr. N. (the general practictioner), when the school would send him home. Repeatedly, Dr. N. would berate me for not “making” Anthony go to school. He told me that Anthony “looked fine” to him. I restated the reason that I brought Anthony in. We argued about our difference of opinion. I tried to explain that he didn’t know Anthony. I tried to tell him of the child I knew before he became ill. Again, he told me nothing was wrong with Anthony and I just needed to make him go to school. At this point, I became so angry that tears filled my eyes. Anthony said, “Come on, Mom. Let’s go. I’m fine.” This just made me even madder because I knew Anthony was trying to protect me. I pleaded with God to allow me to “lay hands” on this man. God didn’t allow me to because He knew it wouldn’t have been for the purpose of healing. Instead, I told Dr. N. I did make Anthony go to school and one hour later, they’d call me to come back and pick him up. In what I guess was an attempt at intimidation, Dr. N. announced, “Well, maybe I just need to talk to the school.” I gladly handed him the phone number.<o:p></o:p>
Dr. N. never called me after speaking to the school. The next week, after picking Anthony up yet another time from school, we again entered Dr. N’s office. He sneered, I don’t know what devastating disease you think your son has, but he’s fine. I told him that I hoped my son didn’t have a “devastating illness.” By this time, I had become firmly convinced that this man was the spawn of Satan. He mentioned the fact that Anthony had high levels of Ebstein Barr Virus/EBV (virus that causes mono) in his blood. When asked what that meant and if that could have been causing Anthony’s symptoms, he informed me that there was no way to know when Anthony had been infected or how long it would last. Fortunately, I had discovered the Internet. I had entered Anthony’s symptoms into a search engine and was taken to CFS sites. I, then, asked the doctor what he knew about CFS. He told me he’d never heard of a boy Anthony’s age to have it. From the research I’d done, I knew there were others. I just looked at Dr. N. In a condescending tone, he said, “If it will make you feel better, I’ll give him a referral to see an Infectious Disease Specialist. I told him that I would feel better if somebody was doing anything for my child. We were given a referral to see Dr. Bernstein as we left that day. We left the office with limited hope. To Anthony, he was being sent to yet another doctor to poke and prod his body and then tell him nothing was wrong. How do you keep a child from becoming discouraged when those they look to for help ignore what’s happening?<o:p></o:p>
When we got home, I talked to Anthony and said something like, “Anthony, you’ve got to learn to be an advocate for yourself. I can’t remember all of your symptoms and you forget by the time we get in the doctors’ offices. We need to make a list of the things that bother you.” We then made a list from head to toe, internal and external. I tried to maintain my composure as that list continued to grow. When we were finally finished, I asked Anthony why he didn’t tell me all of the symptoms before then. He explained that he didn’t know they weren’t normal since some of the symptoms had been with him as long as he could remember. I felt a lump rise in my throat as we addressed his pains. I learned that sometimes, when I hugged my child, I hurt him because his whole body had been hurting (even his skin). <o:p></o:p>
