You have to understand that I'm a well-educated professional. I don't do heat, bugs, sunburn, muddy swimming holes, and I don't do bunkhouses. So how did I end up here, at Camp Glyndon, a summer camper for the first time in my life?
Camp Glyndon, located outside of Baltimore, has a big pool; it has volleyball, tennis, horseback riding, arts and crafts and all the other games and skills of any other camp. But Camp Glyndon also has a very sizable infirmary, two to three doctors, five or six nurses, a whole staff of dietitians. You see, Camp Glyndon is a camp for kids with diabetes, and my 6-year-old son is a diabetic.o
Aaron was a normal, healthy child, as was his brother before him. Then in November 1984, we watched as he grew vaguely sicker, losing weight while he ate and drank voraciously and made endless trips to the toilet to urinate. Finally, I realized that the symptoms I was watching were those of the onset of juvenile diabetes. ::
I am writing this at a picnic table in the shade of a tree on the camp grounds. The screams of children playing fill the air.
But there are some screams that I will never forget. One scream was my son's as he was injected with an i.v. in the emergency room of Children's Hospital that first day. I, too, felt a scream inside me, but it wouldn't come out.
For my wife Jane and me, too, life had changed. We left the life of our nai ve faith in our wellness to one of dealing with a chronic illness that could prematurely end our child's life.
The dinner bell is ringing. Each bunkhouse of campers follows its counselors into the dining hall. The 6-year-olds and their nondiabetic siblings, the mothers and the fathers. The children are sweaty, smiling and hungry. So are the mothers and fathers. But before we can eat, we are issued our meal prescription cards that detail, according to metabolism, weight and activity level, what amount of each food group we can eat. The tables have scales to weigh out the ounces of meat, vegetables and bread. There are no seconds.
In the hospital after he was out of danger, I sat Aaron down and told him how three or four times a day he would prick his finger for a drop of blood and measure with a machine his blood glucose. How he would get an injection of insulin twice a day.
Aaron cried for a while, and I sobbed from the depths of my soul. Then he stopped me and said, "Well, when the kids at school fear going to the doctor for blood tests or shots, I'll be the expert."
At Camp Glyndon, all the kids learn to do their own blood tests and give their own shots. Aaron comes running across a field to me saying that he did an injection by himself! I sweep him up in my arms and rejoice for him. At home, we feared letting a 6-year-old go through the complicated process of drawing two different types of insulin at different doses into one syringe and injecting it. He has now gained one more handle on his own life. I welcome this step with mixed feelings. I can't yet let go of wanting to hold him and protect him from this disease.
When we gather here at camp for mealtime, there is another brief moment that gives pause. Inevitably, one or two children are missing. They're in the infirmary getting over insulin reactions. Activity strongly affects blood glucose levels, and at camp or home or school, this is one more thing that needs to be monitored. Most of the time, Aaron will take care of these situations by himself. At school, he has one or two episodes a week.
When he first learned to manage this part of his diabetes, I was so pleased and thought, "Well, that won't have to be a problem anymore." Then one day, Jane was away and I was taking care of the boys and working at my office at home. It was 6 p.m. and Aaron told me that he was hungry. It wasn't dinner time yet, and I had one more patient to see. I checked his blood glucose and it was just right, so I handed him a few pretzels and told him to wait for dinner in one hour. After I discharged my last patient and closed the office, I heard some commotion outside. My patient had found my son on the front sidewalk face down and unconscious. I was able to arouse him enough to give him some regular cola, which has lots of sugar in it, and in half an hour he was fine. He didn't remember anything about what had happened. Our sense of omnipotence is a myth. I can't even protect my son from the possibility that while at play or asleep he can just pass out. We must always look at the clock and think about how much insulin was given at what time and how much food was eaten when and what kind of food it was, and then how much activity would be involved and what the temperature was outside -- and even then we can't be sure.
But here in the dining hall as the late arrivers come in from the clinic, we all pretend to be nonchalant. Yet every parent glances at his child's color to see if that telling pallor is gone and the child has fully recovered.
Josh, our older son, who is 9, is here too. He cried when his brother was in the hospital, and he cried even more when the gifts and calls came in. Very few people remembered that Aaron had a brother at this moment. How do you explain to your 9-year-old son that because his brother must be attended to many times a day does not mean that we love him more?
It's the fourth day at camp. We just entered the dining hall for breakfast. The dietitian explains the exchange values of each food and the portions. Today, though, there are two empty tables (not everyone can be having an insulin reaction at the same time) and my son is among the missing. I can't start eating. Finally, the stragglers come into the room, cheerful as if nothing has happened. Aaron waves, and I start eating.
After breakfast, I calmly ask Aaron where he was and he replies that they were having "pictures" taken of their eyes. Indeed, his pupils are extremely dilated. I lean over to Charlotte, the mother of a 10-year old girl, who tells me that the people from the Wilmer Eye Clinic at Johns Hopkins Hospital had been there to get a baseline study on each child's eyes. I know there is a risk of going blind from diabetic retinopathy, the deterioration of the part of the eye that receives light impulses. Diabetics can also develop kidney failure and end up on dialysis. Or they can develop heart disease, neurological wasting and numbness and serious infections of minor wounds.
I remember the second day of Aaron's hospitalization, when his doctor gave Jane and me the first of two 2-hour, one-on-one sessions to educate us about our son's disease. I can only remember the words, "diabetic retinopathy, Kimmelstein-Wilson kidney failure, peripheral neuropathy, stroke, gangrene, amputation." Not all diabetics get such complications, but many do. I looked at my son in his bed with i.v.'s and bouquets of balloons around him. "It'll be O.K.," a friend sympathized. "Are you going to guarantee it?" I yelled.
At camp, we play volleyball and have a cookout lunch. Then the parents and the children part, and we go for the second conference of the day. This one is on hypoglycemia and ketoacidosis. The camp doctor tells us what we already know: With routine frequency, our children will get dizzy, headachy, sweaty, stomachaches and fainting spells -- which will be a sign of early insulin reactions, called hypoglycemia. If you don't treat that immediately, with some sugar, the next steps are irritability, confusion, sleepiness, coma, seizure and possible brain damage or death.
Jane and I hold hands. Then I look up at the faces of the parents who have been dealing with this longer than ourselves. They tell of trying to revive their children in the face of these catastrophes. "Oh yes, we had to use glucagon" (a hormone that raises the blood sugar of the comatose child, administered by injection). They laugh as they describe trying to mix the liquid from one bottle into the powder of the other bottle and draw up a syringeful and injecting into their convulsing child. They laugh about breaking needles and finding the liquid like molasses. I can't laugh. This was not supposed to happen if you did things right.
Standing in the corner of the room is Dan Markowitz, the camp director whose very presence says, "That's right, you can do everything right and still something will go wrong, but you'll be O.K."
There is something special about these people with whom we share our days. They are farmers, mechanics, scientists, housewives and students. Some are diabetics themselves. For me they are kin now.
We learned that many of our old friends could not share our new life. Some shunned us from the first; others truly reached out but couldn't understand. These new friends, at camp, understand. As one of them said, "It's hard to talk blood sugars and fainting with those who don't know." It's the last evening. We are having a wrap-up session on the future of diabetic research and the hope of a cure. There is a lot of success in isolating and transplanting the cells that produce insulin. The problem is getting the body not to reject the cells.
We talk about how to deal with hope. You can't say, "Don't worry, Aaron, there will be a cure soon." You also can't say it's hopeless, because it's definitely not.
On this last evening, our children are at a movie. It turned out to be "Willy Wonka and the Chocolate Factory!" These kids who can only have chocolate when they're on the brink of hypoglycemic disaster are still children who love the idea of chocolate.
Harvey Rich, MD, teaches at the Washington Psychoanalytic Institute and at the Military Medical School and is in private practice in psychiatry and psychoanalysis. He attended the camp two years ago; sons Josh and Aaron are now 11 and 8. For more information on Camp Glyndon, call the American Diabetes Association in Baltimore, (301) 486-5515.