Wednesday, December 26, 2007

Why My Son Can't be a Pilot and May Never Ride a Roller Coaster

This is something I wrote in November. I'm putting it up now because in just a few days, we'll know how my son is doing.

My son has a rare eye condition: Coats Disease. It affects 1 in 350,000 people. Some abnormal blood vessels in the back of the retina begin to leak and the leakage begins to collect in the retina. Eventually, if the case goes undetected, when the leakage starts to collect in the center of the retina, it affects the vision, prompts all kinds of other painful symptoms which I don’t want to think about. Worst case scenario: the retina detaches, can’t be surgically reattached, and results in blindness in that eye. Sometimes, the eye has to be removed and replaced with a cosmetic eye.

Now for the good news. The doctors tell us it’s been detected early (stage 2A) so the chances of arresting the progress of this condition are “very good.” They did the first round of laser – to blast off the existing leakage – and some cryopexy to freeze the abnormal blood vessels. A doctor from whom we took a second opinion told us to be prepared for multiple sessions of cryopexy. So we were. No, change that. We knew he may need multiple sessions. But we weren’t prepared for it.

Another talk with the second-opinion doctor reveled that they can do this kind of treatment only around 4 times.

That’s because every time you send that sub-zero beam into the eye, you freeze (read: destroy) that portion. So while cryopexy is just about the only thing that can control this disease, it is also slightly destructive in nature.

Oh, and he will probably never be able to go up in a roller coaster because those kind of fluctuating pressures will only worsen the condition. What am I going to tell him when he insists he’s old enough to try out the more adventurous rides in an amusement park? He can probably never become a pilot like he wants to. Yes, all boys want to become pilots at some point in their life, but having the choice taken away from you sucks, right?

Once the cryopexy is done, you need to wait for a month or two before you know if the treatment is working. But before that, you need to get through the procedure, done under general anesthesia. That’s always scary. Everyone in my family has been under GA at least twice. I don’t remember ever being so worried before. Is it because I’m older, or because this is my son we’re talking about?

The second time he went in for the treatment, I waited outside and mouthed prayers incessantly. I was a nervous wreck already – partly from worrying myself sick, and partly from not being able to display my emotions. I was ashamed of myself, because unlike most of my countrymen, I hadn’t been able to make a vow with a deity. I should have done what I had commonly heard: heal my son and I will bring him to your shrine within a year. Why hadn’t I been able to do it? The thought had crossed my mind a hundred times over. Was I weak, or just plain practical and scared? What if I made a vow but was unable to fulfill it? Besides, my family has never been into these things. Our faith is private and personal. Was I being tested? Was my faith not strong enough? Should I have been telling the Almighty: “I know you will heal him,” instead of saying, “please heal my son”?

Coats Disease can sometimes inexplicably reverse itself. A miracle, in other words. Should I have been praying for a miracle? Sworn to change my religion, like many others had, if my son was cured? Or done something equally intense? Was I too selfish? Was I not taking this thing seriously enough?

I was still saying my prayers when a woman with a cute one-year-old baby came up to me and asked me which member of my family had been taken inside the operation theater. I’d seen her when we’d come in. She was bottle-feeding her baby. The child looked like her left eye was smaller than her right eye. I told the woman briefly what had happened. She told me her story in turn.

Poppet came out on a stretcher this time, with an oxygen mask and drips. And his eye was bandaged. He wasn’t crying and howling in a semi-conscious state like the last time, but this was scary too.

I later saw the woman and her husband talking to the doctor. She looked worried, he was asking a lot of questions. The doctor, a reticent fellow, was answering their questions with the same expression he always wore: deadpan. So it was difficult to make out much. After a little while, I went over to ask them. This time, she kept quiet. Her husband did all the talking. “They are saying they could not reconnect the nerve,” he said. A nerve had been disconnected? “They tried, but they could not reattach it. So now they are saying nothing can be done.”

What did that mean? Would she be blind in that eye? “They are saying there is no vision in that eye already,” he said. “They are saying it will become smaller and smaller and they will replace with it with a cosmetic eye. But I will take her somewhere else also. This is very serious.”

And then it hit me. Their daughter was already blind in one eye. And they couldn’t accept that. He was talking about taking her to other places. She was very quiet.

I wanted to run away from there.

My son's procedure had gone well. Of course, we’d know only by December whether it had worked. And if it hadn’t, he still had two more shots at a cure. Was this curable? I’d never heard or read about a cure to this condition? Was it simply ‘managing’ the condition? Would Poppet need to worry about this, or ‘manage’ it for the rest of this life? That suddenly seemed preferable to what I had just heard. For one second, it seemed like some bizarre way of destiny preparing me for what was to come.

And I couldn’t deal with it. Not then, not that day.

So I ran away. Very selfish, very petty, and very cheap of me. But that’s what I did. I mouthed some nonsense about not losing hope, feigning misunderstanding of what they had just told me. And then I fled. Back to my son demanding to know when we could go home.

“Just as soon as you can keep some food down,” I told him. “Twenty minutes after that, we can leave.”

An hour later, after he had managed to keep down two idlis for 15 minutes and shown no signs of throwing up, we left for home.

Post Script:

The little brat has been chosen to MC a part of his school's annual day celebrations (Kindergarten section). Last year, he was in a dance which he really enjoyed. A few days before the show, he came down with high fever. Although he recovered, he was really weak on the day of the show and couldn't take part. His teacher later told me his partner, Chinmayee (who tied a rakhi on his wrist that year) cried her heart out. This year, he told his teacher he didn't want to be in the dance. So they've made him an MC. His check-up is due the Monday before the show. From what we know, whatever the doctor tells us that day should not affect his performance on the day of the show. I continue to pray...

(This was originally posted on Wednesday, December 12, 2007 on an earlier blog, now deleted.)

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