Chiari Malformation Community
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Avatar universal


So much of Chiari is about loss:  income, socialization, understanding, " normality".  I was just looking at the forum list, and there is weight loss, memory loss, & hair loss; nothing on bereavement.  everyone knows what that is, but even then, people are supposed to "get over it".

Having a chronic illness is really like living in a separate universe.  It's like you're expected to die or get well.

Maybe Hallmark should come up with a card:  "Sorry you have a crappy illness.  Thinking of you.  I'll send you the same exact card next year".
7 Responses
620923 tn?1452919248

  As a matter of fact, I always say there are stages to chiari..both when we are dx'd and post op and they are the stages of bereavement....

Anger, denial, grief , and finally acceptance.....and depending what is going on in our lives we may go thru a few stages several times...just to get it right....lol... but it is a deff loss, but we also can find a new side of ourselves too...

Many of us find just how strong we are...and it is much stronger we ever thought we could be,..that is positive so that is a gain, we also learn patience as we can not do much but wait to heal or hurt...so, another plus to the positive side....and while we sit we find we can do many things we may never have thought we could b4....like paint, crochet...or knit....we can be creative while we sit and we can support others again a positive : )
Avatar universal
Loss of identity too sometimes.  I know this is true for widows, and I'm knowing more all the time.  I'm observing 2 in particular--the more dependent one who married early turned out to be the stronger one.  The more career-oriented one is very bitter.

I'm just musing today.

I find that coping, after 16 yr, can be even 1 hr at a time.
Well, you know the saying--god grant me patience, but hurry!  lol
620923 tn?1452919248

  Explain ur 2 people...how are they different?

Loss of identity sure, while we r recovering....but once we find new things we can do, we find a whole new side of us we never met b4...so...a new sense of self emerges.....

Give it time...and allow it to past in it's own time as time goes by much too fast as it is.
Avatar universal
The 2 widows?  A cousin, married at 19, wasjoined at the hip to her DH, who had a very dominant but also loving protective personality.  I thought that she would fall apart, but in several years now, I think she only complained once, about finding a roofer--how does she decide?  And like a lot if retired people, has concerns about managing money for the rest of her life.
She recently got a tattoo of her DH's signature, which I thought was cool.

The other one, who was left extremely well provided for, can be best summed up as "why me?".  I presume (hope) her anger & self pity is her way of mourning.  But as the years go by, I dont see her becoming stronger, only more frustrated.

I'm not making any judgements, as Ihave no idea what kind of widow I would make (esp. at this point & in this place).

The contrast between the 2, & someone's dilemma when to put down an ailing dog got me thinking of loss, and how it's handled.
620923 tn?1452919248

  Very insightful....one  may have worked for things and appreciated everything...including her DH...while the other  was spoiled....JMO....

It was also part of who they were b4 they married....and the marriage they had  encouraged who they were and allowed that part to grow....

  We have to look in the mirror and see do we like what we see and if not make the changes....some use a mirror to look at the outside and do not go beyond that..they will stay the same  as they were.....

But I do see where u got that ...very interesting.
1925822 tn?1333709217
Viva...what i like about ur comments is that u often leave open space for selfinterpretation...anyhow getting back to the point.u have one of those days and we all do...coping with it really isnt easy...but i also learnt it can always be worse...as creepy as it sounds...there arr a lot of people having to fight different chalkenges...and some that dont even have the option...i know that in the end we all have to live our own life and yes having this condition is difficult as it effects a lot and we do look healthy...i also had the point of depersonalisation...i found my way a bit back or lets say i decided to step forward and take the new root...it does take time and it might take forever...but i am not at the end so i fight.srnding u bear hugs and believr me tomorrow is another day
Avatar universal
"It could always be worse" is my mantra, lol.

In thinking further about depersonalization-- that always changes anyway.  I was a child, then student, then worker, wife & mother.  Then I wasn't a wife for many years. I'm still a mother, but even that has changed.  (some women seriously mourn when their children grow up).

So maybe the even bigger picture is *change*, not loss.  A better way to look at our situation, no?

I have NO idea why I have been so introspective lately!  New moon?  ;-)
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