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        New Message Board Archives >> 2006 General Board Posts >> A sober thought about Milcon
        
(Message started by: wildhaus on Jul 22nd, 2006, 3:13pm)
Title: A sober thought about Milcon
Post by wildhaus on Jul 22nd, 2006, 3:13pm
It’s a week since our, at times very emotional meeting, at times with lots of fun….. and happiness or just a mix of all of it, and at times the inevitable painful moments….. to sum it up very “Potent” get together.

Now that all those moments have settled and things get into perspective, I would like to take
a moment and try to put one thought, it might be critical, and might make some of you even angry….. it is not my intent to make you in any way angry…… but still I do have to try and put this thought in the open with the hope that we can discuss it in a civilized manor …….. as it is a common custom among civilized ppl. which is the way I do perceive you all…….

I came to the Milcon, reluctantly….  the prospective of facing my own problems with CH in the open and in large scale didn’t appeal to me… further and most problematic for me was (and still is) seeing my fellow CH’s get hit…. It would be like looking into the mirror…. and it’s still not a very "appealing" thought…. I cannot gather the courage to face it!

I left Milcon reluctantly…… I found a most interesting, at the least, bunch of ppl. compassionate, warm and most of all with a special sense of comradeship….. “family”

And yet WE all failed to do one thing…..  (and that includes me)……  I would dare and say
due to self absorption…. We developed an empathy to each other, knowing in such a
nonverbal level how we feel, or when we are to get hit…. It seemed that at times
some know it before the person it self got hit, and it didn’t seize to amaze me the way you  understand each other…..

But we mostly IGNORE our supporters….  The ones that stand by us and cannot develop that empathy,
Lucky them!….
They can only develop sympathy for us….. and we, so it seems to me, take them  for granted, the ones that stick to us “crazy” bunch of ppl. live day in day out our pain and can only stand and helplessly and silently (well not always silently) give us a strong and tough backing!

After Milcon, if not understanding, just comprehending where I stand, and what I am facing.  I just cannot stop to think what is it that drives my wife and my kids (and for that matter all our supporters) to stand by me (us), offering comfort, and yet know that whatever they do, will never be enough…..  and still at the next attack they will be there for me (us), supporting, and yet helpless….. it’s more than a commitment, it’s more than love……
And my heart brakes…. when I see it in my son’s eyes and he comes and gives me a kiss on my forehead and tells me “papa – this is medicine, it will take your headache away…..  “ and he knows that it will come again…..

Looking at one of our “own” at Milcon, that pain in the eyes…… helping one of “us”, trying
to comfort… and yet knowing….. there is nothing one can do to take it away….. to see the pain….. and having to “just” be there……. with the heart tearing and not being able to “help”

To all you supporters….. words cannot and do not mean or express what I feel for you…..
For standing by, for sticking to us, for going trough hell with us, and still find a source of force that drives you on to stand for and to your loved ones………

Michael
Title: Re: A sober thought about Milcon
Post by Yorky on Jul 22nd, 2006, 3:24pm
pesonell family are the real heroes ,i totally agree......r lass(the immortal one,and whip cracker)and my three lovely kids could not do anymore/the love/the understanding/the help.......but they still moan if i leave the toilet seat up!
Title: Re: A sober thought about Milcon
Post by pattik on Jul 22nd, 2006, 3:25pm
Michael,  My daughter is my only supporter, and I did not bring her to the convention because I knew I would need every available moment to meet the 50+ people for the first time.  I didn't think it would be fair to her, and frankly,  at age 19, she probably wouldn't have found much to do there that would have amused her after the first couple of hours of meeting people.  Your words to the supporters are very kind and deserving though.
Pat
Title: Re: A sober thought about Milcon
Post by TxBasslady on Jul 22nd, 2006, 3:46pm
Michael,

My supporter's were at the convention.  Jackie is my CH Angel and she's always where I am.   I hope I always acknowledge and thank my supporters.

Let's realize also....there are some sufferers who might not have a supporter at home.   There's never a shortage of supporters at convention.   Those of us who suffer...have become great supporters.

Hard to believe that your wife is from Dallas.   I would love to meet her one day!   I am so happy she talked you into coming.  You have a beautiful family, one to be proud of.

Much love,

Jean
Title: Re: A sober thought about Milcon
Post by maffumatt on Jul 22nd, 2006, 4:12pm
Micheal our supporters suffer more than we do, we know the pain in our head will fade, the pain they feel in their hearts won't. The first CHer that I ever saw get hit was Redd. It made me angry, that helpless feeling I got in my gut tore me up. Thirty min later she was laughing and having a good time again, and yet I was still angry. That must be how our supporters must feel. We have it easy.
Matt
Title: Re: A sober thought about Milcon
Post by catlind on Jul 22nd, 2006, 9:36pm
Quoted from the supporters board by Jackie:


Quote:
Another kind of pain....
« on: Sep 17th, 2003, 2:02pm »  

--------------------------------------------------------------------------------
I'd like to start by telling you all what this post IS NOT.  This is not a post or story that is meant to be self-serving.  It's not a post about who suffers more or who's pain is the more hurtful.  It's not a "complain" post or a "whine" post.  It's a post about what if feels like to be me.....the wife of a chronic clusterhead who I love with all my heart.  It's a post about what it feels like to be me when I read so many of the sufferers posts because I have seen with my own eyes the pain they are talking about.

Clusters hurt supporters hearts.......
I've watched Blake reeling in pain for endless hours.  I've heard him beg God to kill him.  When God doesn't he's begged me.  That's heart pain.

I've seen Blake (some mornings)  looking like he just walked out of a concentration camp.....eyes sunken in, no color, no facial expression.  I ask him if he'd like a cup of coffee and say 'you better hurry up, honey, or you'll be late for work'.  What I'm thinking is how can this man make it another  day...how can he go to work.  But...I know I have to make him try.  I know I can't let him give up.  That's heart pain.

At different times I've asked the doctors to change Blake's drugs.  I've done this more than once and it's usually when he's in "high cycle".  My theory is we have to keep trying...we have to keep looking.  One time when we changed drugs it made it much worse.  Right in the middle of a Kip10 he's begging me to please never try another drug...please never ask him to do this again.  That's heart pain.

I've intentionally made Blake mad when I feel he's about to give up.  I've pissed him off just to get his blood flowing and get the heart rate up.  It works but it just about does me in when all I really want to do is hold him and cry.  That's heart pain.

Clusters hurt supporters egos......
I'm a bit of a contol freak.  I like to take charge and fix things up.  I like to make things better for friends, family and loved ones.  But you know what.....there's not a damn thing I can do to stop the pain when the demon hits.  I can't threaten him, scare him away, bust his balls or buy him off.  I have to accept that I can't make it all OK for Blake until the demon lets me. I have to stand by in a helpless state.  That's ego pain.

There's one more pain and it's called guilt.......Blake and I are husband and wife.  We are soul mates.  We are best friends.   We are supposed to share everything....the good things and the bad....the tears and the laughter....the pain and the "feel good" times.
I have begged God to put the demon on me....to give Blake a break....to leave him alone for just one week.  But.....it never happens.  Blake has to endure all the hits and that's not right.  That's guilt pain.

Well.....that's about it   I've run my mouth again as usual.

Love to you all....suffers and supports alike  
Jackie  

LOL...one more thing.  My theory is never let 'em see ya cry, never let 'em see ya sweat,  never let them see any doubt on your face.....hang tough and they'll hang tough with ya......fight the demon with them and they won't give up......tell them that tomorrow will be better and they'll try it another day.

Damn....I'm a long winded broad...  
Title: Re: A sober thought about Milcon
Post by TxBasslady on Jul 23rd, 2006, 12:11am
:'(
Title: Re: A sober thought about Milcon
Post by Jonny on Jul 23rd, 2006, 1:17am

Quote:
A sober thought about Milcon


Huh? ;;D
Title: Re: A sober thought about Milcon
Post by Kirk on Jul 23rd, 2006, 3:01am
How ya doin Mike? I really enjoyed talking to you. I could go on for fathoms.

TTFN  [smiley=smokin.gif]
Title: Re: A sober thought about Milcon
Post by NONI on Jul 23rd, 2006, 8:29am
That was an awesome post Jackie  [smiley=heart.gif]
My heart goes out to ya as I am a sufferer not a supporter ,But I guess that we are at the same time as when we are having pf days we are supporting our friends and family too.

NonI
Title: Re: A sober thought about Milcon
Post by brewcrew on Jul 23rd, 2006, 4:47pm
The answer to your question, Michael, is at once quite simple, yet so unbelievably complex it is impossible to comprehend.

Unconditional love. They have accepted us into their lives, warts and all. It's a love that is completely and utterly selfless. When one is so absorbed in the well-being of another that he or she loses perception of themselves. They are focused solely on doing what they can to ease our pain - even if that means leaving us alone.

It's the debt that can never be repaid. It's this for which I am most thankful each and every moment I'm alive. I don't know what I ever did to deserve her.

Bill
Title: Re: A sober thought about Milcon
Post by TxBasslady on Jul 23rd, 2006, 4:59pm

on 07/23/06 at 16:47:15, brewcrew wrote:
Unconditional love. They have accepted us into their lives, warts and all. It's a love that is completely and utterly selfless. When one is so absorbed in the well-being of another that he or she loses perception of themselves. They are focused solely on doing what they can to ease our pain - even if that means leaving us alone.

It's the debt that can never be repaid. It's this for which I am most thankful each and every moment I'm alive. I don't know what I ever did to deserve her.


Awesome post, Bill          :'(


Jean
Title: Re: A sober thought about Milcon
Post by Sandy_C on Jul 23rd, 2006, 5:34pm
Hi Michael.  I truly enjoyed meeting and getting to talk to you at Milcon.  

Admitedly, when we are in cycle and getting hit, we become self-absorbed, trying to just get through it, waiting for it to end.  And we know our supporters are standing there, waiting in the wings until our hit has ended, ready to give us the love and attention we need.  Whether our supporter is family, friend, or another CH sufferer, like all of those at Milcon, we value them dearly, for without them, we would not survive this.   I, too, witnessed for the first time, someone getting hit at Milcon.  I was heartbroken, in tears, and angry at my inability to make their pain go away.  This made me understand and love my supporter, my husband more than you could ever imagine.

Not everyone can bring their supporters to a CH convention for a multitude of reasons.  That does not mean we value them less.  

Please don't misunderstand.  I do agree with everything you have said about our supporters.  But, I will disagree with you about ignoring our supporters.  I don't think so.  We need them, we treasure them, and our heart breaks for them knowing how helpless they feel.

Sandy
Title: Re: A sober thought about Milcon
Post by brewcrew on Jul 23rd, 2006, 5:38pm

on 07/23/06 at 17:34:09, Sandy_C wrote:
Whether our supporter is family, friend, or another CH sufferer, like all of those at Milcon, we value them dearly, for without them, we would not have a reason to survive this.

There you go, Sandy. I fixed it for ya. ;;D
Title: Re: A sober thought about Milcon
Post by sandie99 on Jul 23rd, 2006, 6:12pm
My best supporter has been in my life for bit over 7 months. He has not seen me getting hit, but shadows once and symptoms the other night.

Did he panic? No. Did he run a mile? No. Instead, he sat next to me as I took my "meds" and hold my hand the whole time until the caffeine kicked in and I was fine again. He asked what he could do to help me feel better and I could feel his compassion.

I'm so grateful for his support. My last ch cycle would have been much, much harder without him. Yet I see that I can be there for him, too. He has HAs, too. Regular, though. And when we attended a special remeberance ceremony, which was filled with memories for him, I tried my best to be there for him.

Naturally, it' s not the same, but point I'm trying to make here is that we can be there for our supporters, too. In many, many ways.

I do feel utterly spoiled to have this special man in my life. I've been so used to the fact that I have to face ch without support from my close circle back here... He's one of my blessings, absolutely. It would be impossible to take him for granted.

Best wishes,
Sanna
Title: Re: A sober thought about Milcon
Post by Yorky on Jul 23rd, 2006, 7:24pm

on 07/22/06 at 21:36:19, catlind wrote:
Quoted from the supporters board by Jackie:


youv just started my tears agaain(not got emmotional 4 at least 5 days now but you must be an angel...ps and thanks for the support u r giving to ur luved 1 ,i can assure u he feels humbled by your understanding.good luck luv.and god be with you blake
Title: Re: A sober thought about Milcon
Post by LadyLuv on Jul 24th, 2006, 10:31am
Jackie... Your Post brought tears to my eyes..

You are such a wonderful and strong person Jackie, through and through...

Every since I met you in person a year & half ago, you've been there for me, rather it was by telephone or email; and I thank you very much..

Thanks for giving me the true picture/feeling from the supporter side..

I love you very much Jack...
Thanks for just being you..

Luv & Hugs

LadyLuv
Title: Re: A sober thought about Milcon
Post by Jackie on Jul 24th, 2006, 4:29pm
Thank you all for the kind words....you humble me.

Ya know.....we're all in this together.  Together we'll eventually win this war again the beast.

I would do anything in my power to spare each of you another moments pain....God knows I would.

Love to all of you,

Jackie


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