Page 35 - Till the Last Breath . . .

‘What tests?’ The shock on the doctor’s face snowballed into concern

and pity.
‘I have ALS. I know there is no genetic history. I know there is no cure. I
know that I am slowly dying. I could be gone this year or the next. But I

will die eventually. I have read all there is to read about the disease. I know
what’s going to happen. I will not be able to eat on my own, go to the

bathroom or even breathe. You will cut a pipe into my throat to help me
breathe or I might choke on my own saliva,’ she explained. She hadn’t

discussed her painful future with Venugopal for she didn’t have the strength
to. It looked like it could never happen to her. As she finally described her

own death to the doctor, she came to terms with it. The news finally sank in.
In that moment, all her dreams, her aspirations, her visions of herself as a
doctor melted away and the morose faces of her parents stared back at her.

Her eyes glazed over and she resolved to not weep. There is some mistake!
This shouldn’t happen to me. I have done nothing to deserve this. I am

perfectly healthy! Her heart cried out loud.
‘There are treatments—’

‘Riluzole, diazepam, amitriptyline. They will give me a few months
more. A few days more of breathing on my own. I have read all about it.’

She tried not to cry. The doctor didn’t want to give her any false hope.
She had to be ready for what was coming next.
ALS is a cruel disease. It starts with the patient becoming clumsy. You

drop things, get tired easily, and the sensations in your limbs keep getting
dimmer till paralysis sets in. After that, you’re at your helpers’ mercy. You

can’t eat because your tongue and your jaw muscles will be too weak to
chew the food. You can’t talk fast or for too long because your mouth will

become tired after the first minute or so. You will be on crutches … before
the wheelchair comes in. Soon, even that will be a problem because you

won’t have the forearm strength to roll the chair. You will be paralysed and
bedridden. There will be tubes running in and out of your body to help you
eat, breathe and defecate. Machines will keep you alive. It’s a sorry way to

die.