singing in the rain

It's been raining almost every single day where I live, I haven't been able to sleep well for whatever reason, but the training goes on, and I've been training at the neurology department this week.  Today, we visited a hospital where they take care of patients with intractable diseases such as muscular dystrophy and ALS.

One of the first patients we met was a man in is early sixties with ALS who could no longer move his body (including his respiratory muscles -- he was connected to a ventilator) but was still able to move his facial muscles.  I knew they used alphabet boards to communicate at that stage, but it was my first time to actually watch a patient do it.  The person talking to him would read out the alphabets on the board, and he would blink every time the reader came to the right alphabet.  There's an easier way using a computer, but when I watched the man blink with all his strength just to choose a single alphabet in a single word in a single sentence, it felt a bit like having a small carrier pigeon fly back and forth in a small room with one letter at a time, and I couldn't help but realize how lucky we were to be able to communicate so easily.  When we left the room, the patient moved his mouth to wish us good luck, and I think it made us all feel relieved that he looked rather cheerful.

But the next patient we saw was a woman in her forties who had been diagnose in her twenties, and was now unable to move even her facial muscles.  The doctor explained that it was a case of locked-in syndrome, which I think actually leaves the patient with control over her eyeballs and eyelids, but apparently, she couldn't even move her eyes, so there was no way to communicate her feelings.  Her sensory nerves were intact, and she was totally conscious, so she could still hear what others were saying and see what was right in front of her, but no one could tell what she wanted, and she had been that way for the past decade or so.  After training as a student doctor for three months at seven departments, this illness is the one I fear most.

Having said that, I don't mean to say that she must have been unhappy.  Before we left the hospital, the doctor told us a story about a couple with a son who was born with muscular dystrophy (which is a X-linked recessive disease): when the wife conceived their second child, there was a new option they hadn't had with their first child -- prenatal diagnosis.  The wife didn't want to take the test, and was determined to give birth to the baby regardless of his genetic status.  However, her husband's parents insisted they get tested, and as a result, they discovered that their second child also had MD.  The mother ended up having an abortion, but strongly regretted her decision, especially because she thought it meant that she was unconsciously hoping to let go of her first son as well.  She also remembered that many people had told them when he was born that certain babies were born only to parents who could take care of them, and she felt guilty that she had let go of a baby who had "chosen" her.

The patients we met today didn't necessarily look depressed.  We didn't get the chance to actually ask about what they thought about their life, but I personally want to believe that all humans have the power to find happiness under any given circumstances.  I definitely didn't think it was a bluff when the doctor told us what one patient had said to him: that he was unlucky, but not unhappy.  I've thought about the option of prenatal diagnosis a couple of times, but what I thought today was that it was a very arrogant option in a way.  Who was I to decide my child was going to become unhappy just because he had a certain gene (or a set of them)?  Of course there would be hardships, but any kind of life has hardships.  There may be more for him, but he would also have the chance to enjoy happy moments.  Even if it was just once, a brief moment, I think it can still be a moment worth living his whole life for.  But what I think may not even matter -- the point is that the child will have his own thoughts, his own world, and I can't evaluate it with my sense of value.  And at the end of the day, I believe no happiness lasts forever, and when we're feeling happy, it doesn't matter if there are a thousand more moments like that, because right then, we have that, and that's all that matters.