festering

Tuesday, January 4, 2005


I recently read something that has stuck in my craw like a needle; festering my wounds of old, without making any logical sense. Someone somewhere mentioned that the worst part of being chronically ill is the Pity. With a capital P. I have not been "whole" or "well" since I had brain surgery 11-25-97 (notice how I remember the exact date?) because having brain surgery is a very sobering event. It makes one really realize what is important and what is not. I started to eliminate all those things that just do not matter in the Big Picture. 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.

Back to this flavor of pity. Most people do not want others to feel sorry for them. They do not want to be treated like they are fragile. Even when Gil was dying from cancer he rallied against people feeling sorry for him. He taught me a lot. He also took a lot from me. But what has stuck is that I am worthy and that I don't want pity. Rebif has a new self injector out and Charley thinks it would be a good thing if I learned how to give myself the shots. You know, just in case. (Here is where my brain starts shouting things like: Just in case what? You die? You leave? You get tired? What?) But out loud I asked him why he said that...and his response? Just so you know you can babe. See, he gets me.

When I started using a cane I kind of dared people to mention it. Like a school yard bully eyeballing the biggest kid in school and daring him to just start something. Go on....SAY something. I dare you. And most of the people noticed it, asked what it was (like it was a new fancy tool they'd never seen before, duh) and then moved on when my body langue yelled at them for noticing it. It felt brave but now I see I was just scared.

I don't like having MS. I don't like not being able to have my own children. I don't like the ever looming knowledge that someday I may have to have another brain surgery.

But, I do like being alive. I like getting to know new people. I like stretching beyond my comfortlevel and letting complete strangers see the softer side of me.

I struggle to not allow my illnesses define me.

I am more than these things but I am also a result of them.

I am not a caregiver but having been one once I now know how to treat one. It helps me deal with Charley's fears and struggles.

It is scary to love someone and not be able to "fix" their pains.

Breathe in. Breathe out.

Go take more Nyquil and go back to bed now....the fever is killing me.



ckays1967 at 12:52:00 PM PST Link to this entry

This entry has 10 comments: (Add your own)
Sara:

I have been on Rebif since two weeks after I was told I had MS. (After a routine follow up MRI and spinal tap for my brain tumor "care" nothing like the old good news - bad news line from your neurologist: The good news is there is no new tumor growth but the bad news is that it appears you now have multiple sclerosis. We will have to do a lumbar puncture to make sure.)

I have a self injector now but this new one is suppose to hurt less, bruise less and generally be nicer to me. The Rebif seems to be controlling my lesions as my last MRO showed no new lesions. I attribute it more to prayer than to Rebif but since I am not sure which one is which I am going to keep them both thank you.

Do you have MS Sara?
How long?
I know that there are some other illness that also use the ABC meds....

Comment from ckays1967 - 1/15/05 11:01 PM



hi christina, sara here:) i was just wondering how long you have been taking the rebif? i was on it for about six months when i first got diagnosed. i think you'll like the auto injector. i'm on betaseron now, and it's nice that you don't have to see the thing, just press the button:)... anyhow, drop me an email if you have time and energy about how rebif works for you, i'm just curious. thanks, much love and many blessings. sara

Comment from ceschorr - 1/15/05 5:25 PM



Christina you are so faithful. I'm sorry its been too long since I've shown my presence here. I don't like the word Pity either. To me pity is a way of looking down on someone. I think what most people feel is sympathy and/or empathy stirred with a big helping of self-consciousness. They think they shouldn't look at the pink elephant or talk about the pink elephant but it's standing right there in front of them and what they really want to do is hug and show their love and support to it. Does that make any sense? :-) ---Robbie

P.S. Great new pic!!!
Comment from krobbie67 - 1/12/05 10:27 PM



ok forgive me for this , I truly hope you understand what i'm saying.. You are blessed in this manner.. You cherish life, every moment is alive for you.. you get the point of life, you waste nothing and thats the whole point. I'll leave you with this journal entry, and you are in my prayers...
jazz
http://journals.aol.com/desoulsheartbeat/MyJourneyHome/entries/388
Comment from desoulsheartbeat - 1/7/05 4:25 AM



Christina, I understand chronic illness and brain surgery. I have chronic illness and have had brain surgery twice. I found your journal through LuAnne's journal and I will be returning. I love this entry. I don't want pity. Never, ever, ever. I just want people to understand some. A little bit. To understand how I feel in my body. I don't think it is going to happen, except for those who are ill and those who have great knowlege of my illnesses...you take care and I will come back and read your entries!! Big gentle hugs! xox Val P.S. I am a Christian as well and LOVE being alive!
http://journals.aol.com/valphish/ValsThoughts
Comment from valphish - 1/6/05 10:41 AM



It is scary to love someone and not be able to "fix" their pains

This is the line that really stands out to me because I've been on both sides of that statement. Your writing is the real deal. http://journals.aol.com/theresarrt7/TheresaWilliams-author/
Comment from theresarrt7 - 1/6/05 5:25 AM



Chris, this is wonderful.
Oops, your new pics are great!
V
Comment from deabvt - 1/4/05 4:08 PM



Christina,
I cannot express in words how much your entry today has helped me. I have been sad, beyond sad these past weeks. But not allowing others to see my saddness. Not wanting the Pity but searching for the what I am because of my illness. What I have lost because of it. May I link your entry into my journal tonight? Because nothing else could put how I feel into perspective. You have said it all. Thank you. LuAnne
http://journals.aol.com/thebaabee/LUANNESLIFELIVINGWITHLUPUS/
Comment from thebaabee - 1/4/05 3:59 PM



"I am more than these things but I am also a result of them." Great sentence! One of you BEST entries! You are such an inspiration to so many, including moi. During my first year of grief, I use to come and read your journals often for a spiritual lift. I didn't always comment because sometimes between your pain and my pain, I didn't know what to say. When you started visiting my journal, your comments were like nourishment to my soul. See what you do? You have been and truly are a Godsend! Hugs and love, dear friend...gloria, Kevin's mom


Comment from gbgoglo - 1/4/05 2:10 PM



YOu have no idea how many people you help through this journal, hon. Every time I read it I learn something new. I'm equally certain others do too. This entry made me sit up and take notice AGAIN..at your courage and stamina, at your ability to keep on keeping on. What pleasures me the most though is knowing that you know the reason WHY you're doing so well, and WHO is responsible for it. That is another thing your journal does. It reminds people of God's love and enormous mercy. HUGS, my precious friend. Love you so much and admire you even more.*Barb*
Comment from barbpinion - 1/4/05 1:00 PM