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February 01, 2005

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tanya

I have no experience with chronic illness (aside from my aunt's Chronic Fatigue), and I have never faced a diagnosis of one on myself.

I come from the other end of the spectrum - that's where I have more experience - the end where you are born into the world with something not quite normal and have it with you all your life.

It must be quite different from having chronic disease thrust on you unaware. I've had a lifetime to come to terms with my minor birth defect (that no one really ever sees). It is simply a facial flaw and while yes, it can contribute to my overall health occasionally (sinus infections, ear infections, etc.), it's an entirely different thing.

In my immediate family, there are four of us born with the same defect - and of the four of us, my brother was also born with other defects including spina bifida and hydrocephalus.

So, I grew up with the notion of, "why does god let these things happen to good people, innocent babies who have done NOTHING?"

And in my experience...I've come to conclude that it has absolutely nothing to do with you or me. It's simply the way things are.

No rhyme or reason. someone as fantastic as you could in no way be punished like this. It's simply...one of those things that happens. But that trivializes it oddly, perhaps, saying it that way.

natalie

i had ovarian cancer when i was in high school. i was diagnosed in the middle of my sophomore year when i was class president, on homecoming court, & leading the class in gpa. i was out for 3 months and had to go through chemo & radiation & it looks like there's a good chance (75%) that i won't be able to have children now....that fact right there does a lot to a person's psyche. knowing that i'll never be a mom, which was my biggest goal in life (i'm adopted so i really wanted to have "birth children"), makes me so mad and angry and disillusioned.
my cancer has been completely gone for almost 6 years (it came back a year or so later after the first time but we got it early enough the second time), but the scars i see physically and mentally every day. i will never be the person i was before.
and i know my cancer is totally different than your ms--nothing compared to what you will have to go through in your life--but in a way, a very small way perhaps, i know what you are going through. i know those feelings you described so well in your last entry. i feel them too. everyday.

wavybrains

Natalie--thanks so much for your comment. It reminded me how luck really is a relative thing. You say "i know my cancer is totally different than your ms--nothing compared to what you will have to go through in your life--but in a way, a very small way perhaps, i know what you are going through." Funny, but I would switch the words around were I to speak with you. I feel sometimes like such a whiner--shouldn't I be grateful that it isn't cancer, I tell myself. I think we have more in common than you think--that feeling of never being the person you were before. Don't give up on your dreams of kids just yet either--there are so many wonderful advances each day. I'm in a similar boat b/c I want kids, but don't want pregnancy to trigger flare, can't be pregnant and take some of my medications, and should I have difficulty getting pregnant (thanks PCOS), any hormones would probably wreck havoc with my symptoms too. Thank you so much for sharing with me, and lifting me up today.

Tanya, Thank you too--you lifted me up as well. Shit happens is both a relief and incredibly frustrating--I'm too type A--I want there to be a REASON, a plan of attack. Perhaps the overall message is that normal is a myth. We all have something--for some it's visible, for other genetic, for others mental.

Day

Oh I so know how you feel. I do. For some reason I am forever compelled to blame myself for my illness, even though it's absolutely ludicrous. But my type-A side makes me want to control it, make sense of it. And if I can blame myself somehow, then I won't have to think that life and the world is as fragile and random and unfair as it really is.

I'm so sorry you haven't had a chance to lawyer yet. I was working for years before my illness hit. I did thrive in my career; I established a great reputation as a fair, honest, and effective leader. My future was golden; my superiors had great respect for me and looked to me to solve problems. I wasn't power hungry, but I was looking rather to prove myself...for very similar reasons you allude to in your post.
As my illness progressed, my struggle to achieve slowly morphed into a struggle to get through a workday. I started recognizing mistakes. I started petering out by noon, unable to remain sharp or focused for more than a few hours a day. And after months of fretting, after grieving the loss of the hope of all I had worked so hard for, I made the agonizing decision to walk away before I lost my edge - to let my reputation remain what it was and for people to remember me in a good light. So I stepped down, took a demotion, and got set up in a home office. I extracted myself from the decision-making and the consulting and began life as a worker bee. It all but killed my spirit. I was miserable.

A year later, I'm doing much better. I've adjusted to being out of the loop and have started to appreciate it. I am able to sleep in or rest when I need it...because of that, I feel like I'm doing a better job, even thought that job used to seem menial and "below" me. I don't leave my office stumbling nor bleary-eyed. I have energy to give to my personal life. I'm healthier - my blood counts have been steadily better since. I'm learning to let go of measuring my worth in my accomplishments and instead realizing that when this thing finally "gets" me, I won't give a damn what my title was or what my job responsibilities were. I know I am fortunate to have been given such a work-from-home position, but they are out there, and a legal background can only help.

I hope this comment comforts you; I guess what I'm trying to say is that I'm sorry you're in a position where you can't pursue your dream, and that sucks. But time helps you to adjust, and you learn you're not a loser at all, and that there are other, far more important things in life, such as love and friendship and living in the moment. And I know that last sentence is a bunch of bunk when you're in the chronic illness sinkhole and trying to figure out what the hell it is you're going to do, but it's true. You learn to count your blessings and your priorities shift. You will feel better about this...it may take a while. You'll find something that strikes a good balance for you. There are days I am still bitter; I don't think those ever go away. But I'm learning to live better with illness. You will too.

That being said, it all still sucks, and I'm so sorry you have to go through this and feel the way you do. I so know.

wavybrains

You said: "I'm learning to let go of measuring my worth in my
accomplishments and
instead realizing that when this thing finally
"gets" me, I won't give a
damn what my title was or what my job
responsibilities were."

I think I'm going to post this on my refrigerator, my friend. Wow. How true is that. At the end of the day will it really matter if I only spent two years as an assistant attorney general and 25 as a writer? Will it matter more if I push myself to collapsing or if I treat myself well, and am a nicer person to come home to? Will it matter if I briefed more cases or if instead if I read more books?

Thank you so much for putting that in perspective for me. Thank you for telling me that you have bitter days too. Thank you for giving me some hope.

Michele

There is beauty in your words because they are spoken with such brutal honesty. If given the choice to let anger consume you or to use it as a vehicle for expression it is so counter-productive not to choose the latter. You not only articulate your fears with such a powerful force that it prompts me (and possibly many other readers) to look at their own reaction ot chronic illness, anger, art, and life.

Thank you for that.
Now could you please tell me why the hell I have not blogrolled you before now?

blaze

Sometimes the realization that we are weak is the greatest strength.

why should one strive to be perfect? when our imperfections(Dependance and need to co-exist) defines our world.

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