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incurible

Posted Oct 01 2008 8:39pm

Monday, January 17, 2005


The pettiness, the fear, the selfishness, the unrelenting desires.....I let them all go like a banana split boat in the gutter after a good rain...forge on little boat. Forge on.



I keep returning to this entry of mine...because it really captured the sense of frustration I am currently wrestling with. I truly struggle with pity and concern because on some level it never quite seems sincere, like a smile that covers the lips but is betrayed by the eyes. Why do people ask me questions to which there are no answers.....

Them: How do you feel?

Me: With my fingers and toes? Fine? Like I have MS? Like I did last year or last week or ten seconds ago? Heck, I just live. (Out loud I say fine.)

Them: Are you getting any better?

Me: HELLO.....CHRONIC INCURALBE ILLNESS. NO CURE. NO KNOWN CAUSE....DUH. (Out loud I say no I will have MS until there is a cure.)

Them: Well, how's the brain tumor.

Me: OH BOY>>>>>>duh. It is still there. It lurks somewhere in my sinus cavity like a timebomb that may or may not go off or may turn out to be a dud like the cherry bombs we use to buy in old Mexico. (Out loud I say that there is no new tumor growth.)



The level of compassion is real but the questions are basically rhetorical. The love is so tangiable I can almost build a sand castle from it but in the end the waves will still lap away at the beach. Crashing in. Crashing.



ckays1967 at 12:13:00 PM PST Link to this entry

This entry has 8 comments: (Add your own)
This stage drove Patti bonkers. When she handed enough people their heads back bitten off, questions shifted to me as spouse / caregiver. I don’t know if that is better, Patti seemed to think so . She gained a Public Information Officer. We experimented with me running interference and she could choose her questions to answer. A negative evolved into a positive, like a rock star and manager relationship. I tried to be a filter when possible by handling the rhetorical, thumbnail summary of MS, and ‘suggestions’ for Patti’s personal ‘protocol’ .
Patrick http://journals.aol.com/daddyleer/CaregivinglyYours/

Comment from daddyleer - 1/18/05 5:35 AM



It's really too bad this idea isn't brought out more. Your description of the process as rhetorical definitely feels true. Part of it is that people (Americans??)don't know how to react honestly to anything, much less illness and especially not death. When my mother was dying of cancer, I would catch myself asking her the same questions over and over: How is your appetite? Are you in pain? Is there anything I can do? I just wanted to kick myself in the teeth, but what else could I do? My mother wasn't one for the kind of honesty you express here (we never talked about anything as a family)--I wish she had been, I wish we all were this honest so that we could break through the crust of ourv"selves" once and for all and know how to relate to each other and to ourselves. This document you're creating for all of us is important.
Comment from theresarrt7 - 1/17/05 10:48 PM



Just know I do care about you and keep you in my prayers. *Barb*

Comment from barbpinion - 1/17/05 4:28 PM



Oh Christina,
I am there with you. I am so there with you. Love you bunches LuAnne
http://journals.aol.com/thebaabee/LUANNESLIFELIVINGWITHLUPUS/
Comment from thebaabee - 1/17/05 3:29 PM



{{{{ Chris }}}}
V
Comment from deabvt - 1/17/05 2:39 PM



I can relate to your frustration and the questions on a different level. I, too, struggle with pity and concern but the fact that I'm struggling makes me aware of the sincerity of the asker. Therein lies the challenge. Do I accept or reject what is asked...or do I have some fun with the questions asked, and come back with some far out answer. I have a low tolerance for what I call "stupid questions" or in your case, questions with no answers. the kind where the obvious escapes the mind of the one doing the asking. I'm not sure I understand what I'm saying here... I hope you do. I know what I want to say, just not sure it's coming across that way... I'll stop my rambling... Forgive me if I've caused you any discomfort by my words. Hugs...gloria
Comment from gbgoglo - 1/17/05 1:22 PM



I can sort of understand the "getting better" question, because (correct me if I'm wrong) with some forms of MS, you can go into remission and be "better" for a period of time.

I imagine learning to live with a constant level of "pity" or concern from your friends and family is just one of the challenges of dealing with chronic illness. My sister had RA. I know she didn't like to talk about it. So we just...didn't. But it DID seem a bit like having an elephant in the room, sometimes... Lisa :-]
Comment from mlraminiak - 1/17/05 12:29 PM



All I can say is I'll ask God to put you way up high on my prayer priority list.
I wish I could wave a magic wand.
Angela


Comment from readmereadyou - 1/17/05 12:27 PM

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