How this man, with the rare conditions, chose, to approach the difficulties, the trials in his life, translated…
That day, I’d received a message of him, talking about euthanasia. He said, if the day comes, he’d lost the last ability of blinking his eyes to communicate to the outside world, and, was forced to live on, “I’d hoped to get euthanized, with my dignity intact.” These words, were passed to us, from his use of the phonetic spelling board that he used to communicate, sound, by sound.
Being completely blind, as he’d passed age forty, he was diagnosed with ALS. Although, there were, trials all over the passages in his life, but the day he was, given the formal diagnosis, I’m sure, he was, still very, shocked.
Since he was trapped inside his body, every move became, very trying for him, eating, turning himself over in bed, going to the toilet, scratching his itches, bathing…………he’d, needed someone else to help him do. He’d become, bedridden long-term, there’s, no place he could, escape to, but, with the radio, and the sports competitions on TV., he’d lived out his life, quite colorfully, I think it’s, very nice. Until he’d, called me up and told me this, I’d felt, unsettled, told him, “If one day you choose to get euthanized, I’ll, give you my blessings for it.”
It was four o’clock one morn, it was, not light yet, his nurse was still asleep, when his respirator had, stopped pumping, the bell rang, showed that he’d, needed help. The nurse started reading off parts in his body: head, hand, body, feet……if he’d, blinked when she’d said “hand”, that meant something was not right with his hand, and, she’d, massage his hand, or do something else to help him feel better.
As the caretaker was waken up, she’d started, calling out the body parts to him: head, hands, body, feet……and seeing how he wasn’t, blinking at any of that, she’d, added, “do you need to go?”, and, he’d, blinked to show that that was, what he’d, needed. But he wasn’t, really in a hurry, to go to urinate, but, before he was taken to the toilet, the nurse would, take off his oxygen mask, that way, he’d had, solved the problems, and so, that was, what he’d, thought up of, doing.
And, just like that, the respirator had, started working normally again. And yet, as the nurse realized, that he wasn’t in a hurry to go, and didn’t get, that it was his respirator that was, the problem, she’d thought he’d, waken her up for nothing, and got a little bit, displeased with him.
The day started, very upsettingly, with this. And yet, in his six years of being diagnosed with ALS, this may just be, one tiny matter, in the enormous trials of his life! Time had, tortured his body, living like this, is it, really, good for him? Is all he can do, just, giving himself up to time?
On this day, I’d come, to read for him. I’d selected the funny, the weird, the interesting things, to read to him. He’d flashed a wide variety of facial expressions as I’d read, immersed himself in it; and he’d even, started laughing as the passage was too funny, to the point he’d started, drooling; to the parts of the mysteries, I saw him, deep in thought, with his eyebrows raised, until the puzzle was, solved, then, he’d, started, smiling again.
I knew, that these interesting things won’t change his life, but it can, make his days go a whole lot better. That smile took up, only, the minutest part of his day, but, on this ordinary day, it got, magnified, I hope, that the short time I read to him, will keep his mind away, from how he was, tortured by his own ill body, that, was the gift I wanted to, give to him, every time I’d, visited him.
One day, I’d started reading to him. And that day, the translator friend was also there too. As I was finished up reading, he’d, blinked, that he had something to say, turned out, that he’d, heard the passage I’d read to him on the radio, “such a coincident”, I was, moved, on how focused he was, approaching everything that he did, and how he’d, wanted to, interact with me. Then, I’d wanted to, ask him that question, I’d, bore with me a long time: how do you feel, being diagnosed with a rare condition?
He’d, blinked hard, and, said the complete sentences, “I’d read up in the books that this was from the evolution of the genes, that changing, is the way the world keeps on turning; I won’t ask: why me? I am, normal, if I don’t have this illness, I’d, be blessed with luck. So, I think of myself as a normal person, but, an unlucky man.”
As I’d heard his replies, a voice came from my heart, yes, he was, exactly like he was before he fell ill, rational, and steady, I’d finally understood, that he wasn’t afraid of his own illness, that as he’d, walked, toward the end of his life, he’d, chosen, to live out the rest of his days, dignified, even, he’d, become in control of how and when he is to die; because that way, he can, earn his own respect, and love for himself.
And so, we have here, a man, who’s trapped inside his, ailing body, but he’d, still fought on, every day of his life, to continue living his life, he’s, undefeated by the trials of his illness, and that, is something we can, all take from, this man’s persistence, his courage, in facing the trials in his life.