Free Will

 It's July. Two years ago this month  I took the dreaded EMG test. It was my second time taking this test after a couple of months. And yet I wasn't mentally prepared for it because I knew what was about to happen. EMG is a very painful test in which they insert a needle one by one into every major muscle of the body, including back, both shoulders, both upper arms, forearms, hands, abdomen, both thighs, calves, feet, and even the face and the tongue. Yes, because I had complained of heaviness in my tongue I had to get it pricked as well. After pricking they ask you to flex the muscle, this is the point where it hurts the most. 

The Arabian Sea on a cloudy July day

The hospital at which the test was conducted was quite far away from home, and the test results would take another two hours, so I had some time to kill. We visited the Gateway of India, a popular monument overlooking the Arabian Sea, and followed it up with lunch at Cream Center, one of my favorite restaurants albeit with a half dead, pricked tongue as I waited for the anesthesia to wear off. 

I was fairly confident about my results being better than the last EMG, because I had been doing physiotherapy sincerely as prescribed for the past couple of months. Now I laugh at my own naivete. After preparing well and scoring high on tests in my academic life, I was about to be handed the worst result ever. I had deteriorated significantly although it was not so apparent on the outside yet. To make matters worse the result remarked "Tongue is normal", well I lost my speech some months later, which means the test wasn't even precise enough to detect the deterioration. Why did I even bother to get my tongue pricked!

As I look back, the thing that bothers me the most is loss of free will. There are so many micro decisions we make as humans every day, whether we feel like sleeping in for an extra few minutes, or wake up early or stay up late to watch a match, what we eat, whether we grab a snack because we feel like it, make an impromptu dash to the supermarket or go out on weekend to the mall. They may be significant or trivial. It is difficult to give up control of your life.

As an ALS patient, I can't decide for myself. At least not before aligning with all stakeholders before hand. Every event requires planning. The spontaneity of life is gone. The truth about ALS is it is not just a physical disease, there is much bigger impact than meets the eye.

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