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ClusterChuck
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Why the FUCK ?????
« on: May 17th, 2005, 3:38pm » |
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As most of you know, for the past two weeks, I have been traveling across, then up, and then back across the country in a train. Not the best mode of traveling, in my book. But I can now say “Been there, done that ...” It was a family trip, with my father, two sisters and their husbands. We did it for Dad, who is having a hard time dealing with Mom’s death. It was mostly good for him, as he was spending time with his kids. Once we got to California, my other sister flew out and all five of us kids were there with Dad. The joy on his face made most of the unpleasantness, worth it.
What unpleasantness? How about being confined into a TINY sleeper, with your Dad, and having to deal with the beast? I, like most of us, like to go off by myself and deal with a hit, in private. I was able to do this for most of my hits, but some were witnessed by Dad, my sisters and brothers-in-law. Not too bad, as they were not that severe, and the oxygen took care of them.
Then the shit hit the fan. Dad and I were sitting there reading, and I felt one coming on. I hit the oxygen, and it did nothing. It continued to build. Mind you, Dad has never seen me get hit! This one built to a solid KIP 8. I was trying my damnest to sit relatively still, not scream out a plethora of vulgar profanities, and not bang my head against the wall. I was not totally successful. One hour and ten minutes later it finally left me. I then looked over and saw tears streaming down Dad’s face. Dad was born of native Russians, in New England, on a farm. He was brought up with the idea that real men don’t cry. I had only seen him cry two other times, one of those times was at Mom’s funeral.
I would rather have KIP 10’s all day, every day, with no abortive, than to have seen the devastation in my father’s eyes. Why does the beast have to be so fucking cruel? I can deal with me getting hit (what choice do I have?). But why does this have to carry over to the ones you love? That, to me, is worse than getting hit. The absolute, most horrendous part of this fucking illness!
Damnit, beast, LEAVE MY FAMILY OUT OF THIS!!!!
Sorry to ramble on so, but I just had to get this out to those that understand my fury.
Chuck
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cootie
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Re: Why the FUCK ?????
« Reply #1 on: May 17th, 2005, 4:03pm » |
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Wow....that story really got to me.....Brad's family does NOT HAVE A CLUE.........I dunno what they'd do and I fear it would be all the wrong things. I kinda figure'd a train ride cross country would be a bit ROUGH.....cool trip but rough and not to private. I jus wish ta hell and back there was SUMTHING that worked to stop this shit so no one has to suffer. Bad days of bad shit Pam
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Jimi
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Re: Why the FUCK ?????
« Reply #2 on: May 17th, 2005, 4:12pm » |
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Sad story Chuck and one many of us can relate to. I was very private when I was being hit. But a couple of times in front of the kids when I could not make it back to the house or I was just caught unprepared was tough because i could see the fear and pain in their eyes. Over the decades though it didn't happen often.
Glad you shared it though, because if anyone understands how that hurt you, we do.
See you in Dallas bro.
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pattik
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Re: Why the FUCK ?????
« Reply #3 on: May 17th, 2005, 4:42pm » |
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Quite a story, Chuck, and well written too. I have two things to say about your final comments:
It seems that you were feeling guilty or at least angry about showing your pain, and guilt is a pretty useless emotion, especially when it relates to something you have little or no control over.
Love is a two-way street, especially when it comes to family, and you shouldn't deny your father the chance to grow closer to you through more understanding of your CH. It seems to me that hiding the truth from people we love (even if to supposedly protect their feelings) actually works to separate us--the opposite of what we should be striving for with our aging parents.
I'm so sorry you had to go through so much pain, and on a
rocking train, no less..I'm sure that I would have lost my cookies under the same circumstances. 
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Jonny
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Re: Why the FUCK ?????
« Reply #4 on: May 17th, 2005, 5:05pm » |
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on May 17th, 2005, 4:42pm, pattik wrote:| Love is a two-way street, especially when it comes to family, and you shouldn't deny your father the chance to grow closer to you through more understanding of your CH. It seems to me that hiding the truth from people we love (even if to supposedly protect their feelings) actually works to separate us--the opposite of what we should be striving for with our aging parents. |
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WOW!!.....Just wow (in a good way wow)
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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maffumatt
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I agree. Well written too Pattic.
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nani
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Re: Why the FUCK ?????
« Reply #6 on: May 17th, 2005, 5:38pm » |
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Great advice, Patti. 
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Linda_Howell
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Re: Why the FUCK ?????
« Reply #7 on: May 17th, 2005, 6:40pm » |
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Anyone who is a parent can understand the devastation Chuck saw in his Dad's eyes.
Chuck, my friend....If you had a bleeding splinter, you'd have seen the same look.
Don't feel guilty.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Jonny
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Re: Why the FUCK ?????
« Reply #8 on: May 17th, 2005, 6:44pm » |
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on May 17th, 2005, 6:40pm, Linda_Howell wrote:| Chuck, my friend....If you had a bleeding splinter, you'd have seen the same look. |
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If?......he has one in his pants 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Linda_Howell
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Re: Why the FUCK ?????
« Reply #9 on: May 17th, 2005, 6:49pm » |
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Oh...o.k. I get it. HUMOR! (HE said it Chuck. Not me)
anthing to get your mouth in the upturned postion...wait. That's not right either...Sweet Jesus, I can't do anything right today.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Cathi04
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Re: Why the FUCK ?????
« Reply #10 on: May 17th, 2005, 8:10pm » |
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Chuck......I thought your dad was a great guy. I saw him watching you like a hawk, and, when you excused yourself to get the 02, he left the table as well.
Maybe he is quite new to CH, but bless him for wanting to help.........with that comes even more awareness, and buddy, you will NOT stop him from loving you!
Is it painful to watch????? Absolutely! Without a doubt!
Did it hurt Walter to see you in abject pain? Again, absolutely! Would your dad have had it any other way?? No.....and he was completely there for you, if only to sit quietly beside you for when you came out of it. He did it as much for himself as he did it for you.
WHY? You ask?? For the same reason you stayed close to him when your mom died.....Dad needed you.
Good, Chuck, for joining your Dad on a special trip.....and letting him into your life a bit more. You have a bond with him that cannot be broken.....and it is MUCH deeper than CH.coz I will NOT give the beast credit like that -EVER!
Group Hug for the Setzcos....
Cathi
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Charlie
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Re: Why the FUCK ?????
« Reply #11 on: May 17th, 2005, 8:37pm » |
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So sorry Chuck. Damn, you're right that this horror never gives you a break. It's shitty on every level and the effects on others is horrible for us.
Unlike you, when I was getting hit but then I and my family understood the thing only because of my familiarity with my neurologists. The only time epilepsy didn't stick it to me.
You're a good man Chuck in spite of what everybody says.....  
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Sean_C
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I think thats one of the worst parts of CH too. When you've lost control and you know it, its a long ride to the bottom.
Sean........................
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cootie
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Re: Why the FUCK ?????
« Reply #13 on: May 17th, 2005, 11:12pm » |
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Showing pain 'to sum' is a sign of weakness in there own mind........in nature the weak get eaten Pam
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bigAl
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Re: Why the FUCK ?????
« Reply #14 on: May 18th, 2005, 12:23am » |
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Chuck,
Is it possible that your father has seen this before, perhaps with someone in the family that he knew when he was young. Is this why he was crying?
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Gator
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Re: Why the FUCK ?????
« Reply #15 on: May 18th, 2005, 1:51am » |
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Chuck Sounds like you got to spend some quality time with your dad in spite of the beast. As far as your dad seeing a hit - I think pattik's post says it all.
on May 18th, 2005, 12:23am, bigAl wrote:
Chuck,
Is it possible that your father has seen this before, perhaps with someone in the family that he knew when he was young. Is this why he was crying? |
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Being a parent and a grand parent, I can tell you that regardless of what he had seen when he was younger, seeing his son in such pain for the first time would do it.
I was a tough nut in my younger days. Investigated many accidents and incidents involving major injury and death - never phased me. When my son was in a car wreck back in August 2003, it about killed me to see him in such pain.
on 05/17/05 at 15:42:07, pattik wrote:
Quote:| Love is a two-way street, especially when it comes to family, and you shouldn't deny your father the chance to grow closer to you through more understanding of your CH. It seems to me that hiding the truth from people we love (even if to supposedly protect their feelings) actually works to separate us--the opposite of what we should be striving for with our aging parents. |
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sandie99
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Re: Why the FUCK ?????
« Reply #16 on: May 18th, 2005, 2:36am » |
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Chuck, I'm so sorry...
I was hoping for a PF trip for you... 
But I am glad that you did get to spend nice time with your family insipite of the beast.
Having said that and reading Pattik's reply I understood that I haven't let my family see me having a full-blown attack, ever.
Sure, mum has seen several kip 1s and 2s, but that's it. Now I feel guilty for not doing that. Perhaps she and the rest of them would understand what this is better if I'd let them see all of it. But I, too, prefer to deal with it as privately as I possibly can.
Perhaps my aunt would stop telling everybody that I imagine my HAs instead of really having them after seen a full ch attack! Not a pretty sight, but eductional one, I'm sure...
Best wishes & PFdays,
Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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LeLimey
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Re: Why the FUCK ?????
« Reply #17 on: May 18th, 2005, 4:16am » |
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This whole thread has put a big lumpin my throat. Chuck my love you are a dad yourself and you know you wouldn't be anywhere but right at your daughters side if she was suffering, don't deprive your dad either although I do understand where you are coming from with it.
You know we love you Chuckiepoos!
Helen
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alchemy
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Re: Why the FUCK ?????
« Reply #18 on: May 18th, 2005, 6:13am » |
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having clusters is a burden for some reason we've been given to carry. sometimes we get little rewards for this. coming out of your cluster and having your father sitting there developed a deeper bond with him, one of the greatest rewards we could ever get. enjoy whatever time you have with family. they enjoy it with you no matter the conditions.
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E-Double
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Re: Why the FUCK ?????
« Reply #19 on: May 18th, 2005, 7:35am » |
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on May 17th, 2005, 3:38pm, ClusterChuck wrote:
I would rather have KIP 10’s all day, every day, with no abortive, than to have seen the devastation in my father’s eyes. Why does the beast have to be so fucking cruel? I can deal with me getting hit (what choice do I have?). But why does this have to carry over to the ones you love? That, to me, is worse than getting hit. The absolute, most horrendous part of this fucking illness!
Chuck
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I hear ya brother!!!! Hugs to ya and all!!
on May 17th, 2005, 4:42pm, pattik wrote:| Love is a two-way street, especially when it comes to family, and you shouldn't deny your father the chance to grow closer to you through more understanding of your CH. It seems to me that hiding the truth from people we love (even if to supposedly protect their feelings) actually works to separate us--the opposite of what we should be striving for with our aging parents. |
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Same goes for all whom we love.....we inadvertantly alienate ourselves and them.
Well put!!
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I can't believe that I have to bang my
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rickyshot
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Re: Why the FUCK ?????
« Reply #20 on: May 18th, 2005, 7:46am » |
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I am still in cycle Know the feeling. My son had to watch me go by ambulance AGAIN to ER on Saturday fuck.......
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sandie99
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Re: Why the FUCK ?????
« Reply #21 on: May 18th, 2005, 10:28am » |
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on May 18th, 2005, 7:46am, rickyshot wrote:| I am still in cycle Know the feeling. My son had to watch me go by ambulance AGAIN to ER on Saturday fuck....... |
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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rickyshot
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Re: Why the FUCK ?????
« Reply #22 on: May 18th, 2005, 10:30am » |
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I love you too Sandie and all my cluster family even Don. 
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sandie99
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Re: Why the FUCK ?????
« Reply #23 on: May 18th, 2005, 10:44am » |
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Yep, we're a real ch family, here...
And family members don't always like each other but they always care. 
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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