i thought it was a joke. i was thinking other people had too much time in their hands, they actually had the time to have a little creepy kind of fun.

“diagnosis: DEVIL syndrome”

that’s how it looked to me, and the nurse who just got the patient a couple of hours before i came in, had no time to find out what it meant. we both smiled, probably thinking the same thing, that it was some sort of a joke.

it turned out, it was DEVIC syndrome.  i also found out there was nothing funny about this rare diagnosis.

last month, she was living the good life. at 21, her life didn’t suck. then, out of nowhere, she started feeling weak in her legs. she had difficulty of breathing, and was taken to the ED. she stayed in the ICU for a couple of weeks and came to us with a trach, paralyzed from the waist down. her vision was blurry most of the times, she can move a couple of fingers on her left arm, and her right hand was very weak.

it was shift change, her phone was ringing, she was very thirsty, she can’t reach the water. she tried the call light, but didn’t have enough strength to press it. i came in at the time when she was so frustrated and angry, all she could do was cry.

she was oblivious to my apologies and explanation about the shift change scenario, where all incoming and outgoing nurses were busy taking and giving report. she had a major question, and she had to ask it.

“why me?”

i had to place her speaking valve on the trach, because at first, i didn’t really understand what she was mumbling.

“why me?”

oh.
what do i say to a question like that?

“last month i was okay. i mean, i have not done anything bad to other people, i am not mean to them. now, i can’t even get my own water, and i can’t even pick up the phone.”

she went on and on about how it was before, and why does it have to be this way now. she wanted answers. she never said anything about her lupus. maybe because she is at peace with the fact that it is okay for now. maybe because she didn’t really have any major problem about it for years, despite the diagnosis. but now, this devilish syndrome. she wanted to know why, and she reasonably wanted to know “why me?”.

i don’t have any answer, so i held her hands, looked her in the eye and said “i don’t know”.

_____________________

who asks “why me?”

the question is obviously directed to some Supreme being. the question is mostly asked to clarify if something tragic is some sort of a punishment. the question is more intense then, if one is consciously aware that he has not done any wrong against another human being. does this question get more intense at christmas time? with all the supposed good tidings and Reason for the season, is it harder to deal with pain when one believes the angels singing “glory to God in the highest…..”

do people who do not believe in God ever ask this question? or they go around INSTANTLY accepting whatever happens, tragic or otherwise, because there is no one responsible for the world? is it easier for those who do not believe in God to deal objectively with suffering? do they ever grapple with unanswerable questions?

do people who believe in God/Jesus actually use their belief as an excuse so they can blame someone? are we some sort of ungrateful, stupid losers who just sit in the corner and say, “well, it’s His call, and He didn’t do it, let’s blame Him”. or are we some bunch of hopeful people who know there are no answers but choose to believe anyway because we know there will eventually be answers?

is believing, or not believing, some kind of a game? if that is the case, how important is winning? if that’s not the case, how irrelevant is losing?

____________________

she wasn’t my patient this week but i went and see her. i was told she can hardly move her right hand anymore. too weak to ask for those oreos she used to dunk in a cup of milk.

i remember how she was so embarassed that i had to change her gown because she spilled all the milk while dunking the oreo. i offered to give her milk and suggested she use the straw instead of drinking straight from the cup. like a little girl, she smiled “i’m sorry, i wasn’t drinking it, i was dunking the cookies”. it was great to see her smile, almost happy.

i stared at her, breathing slowly and evenly. she looked so young, yet she smelled like death. she looked peaceful, but tired. she looked done, but unfinished.

i didn’t wake her up. i don’t know if she is still hoping to know THE answer. i don’t know if the finality of it all, the possibility of her life wasting away, made her stop believing, or strengthened her faith.

i don’t know.
but it doesn’t mean i don’t want to know.