Posted by Margi on May 31, 1999 at 21:26:11:
Hi Everyone.
I'm taking a page out of lc bob's book and posting a longie here. Hope no one minds...this is my response to Drummer's request for how CH has affected our lives. I've sent it to a couple of my supporter buddies out there and thought maybe some other supporters might be able to feel a little less alone in their fight. I apologize for the length but I was on a roll. OK, grab a coffee and get comfy. Here it is.
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Date: October 19, 1998. Municipal Election night. My 66 year old mother is running for Town Council of Cochrane, my home town just 15 minutes west of where Mike and I live. My grandfather would be so proud of her (her dad) if he were still alive. She is alone and raised me alone, her only child. She is strong. She has campaigned now for 6 months. The big night is here.
Who knew when I told her "Of course, I'll be your campaign manager" that Mike would be at the peak of a cluster cycle tonight, election night? I have to be at election headquarters. I am scrutineering for Mum (ensuring the vote counters don't make mistakes). Mike has, by suppertime, already had four "headaches" today and doesn't want anything to eat. It kills me to have to leave him but our daughter (age 16) is home and she knows to leave him alone when he is under attack and to call me on my cell if there is an emergency. He has his oxygen tank in the garage. He has taken so many pain pills today that he is almost rattling when he walks. He puts on a brave face and tells me he is just going to try and sleep a bit on the couch. I make him PROMISE to call me if he needs ANYTHING. His eye is droopy and he hasn't slept in days so I pray that he can catch a few pain free hours, after all 4 so far today, he should be okay for a few hours. Hesitantly, I leave for what will be the biggest night of my mother's life. She stands a good chance at winning a seat and I want to be there to show her how proud I am of her.
I arrive at headquarters. Mum is coming unglued....she is shaking...she is smoking....she needs me. The excitement is palpable in the room. The vote counting starts. She quickly jumps ahead of the other candidates and I begin the scrutineering process. I am so proud of her. She's going to do it! The first one in our family to be elected to office! She's come so far. My heart is bursting!
Mike calls me at 9:00, an offer has been made to buy our trucking business and he is really excited - he is up. He's not sleeping but at least he has something new to think about. I relax a little. Silly me.
The evening wears on - the race is getting tighter. There is a newcomer to the area who is giving Mum a run for her money, her lead is dwindling - it is getting close to 11 p.m. Mike calls me again, the purchase sounds like it is going to go ahead - finally, we may be getting out of debt. As we close our conversation he says well, I'm going to go suck some O2, feels like another one is hitting...my heart sinks...I tell him I shouldn't be too much longer and to call me if he needs me. The race is tied right now, Mum is in another building with the other candidates. She slips behind suddenly in the race. He's ahead by 5 votes.....NOOOOOOO, I think - come ON, Mum - you can do it! My heart is in my throat - there are only a few more boxes of votes to be counted. For an instant my focus is not on Mike but on Mum, she HAS to win.....I don't want to have to tell her she lost, but it's not looking good. It's 11:59, my cell phone rings. I know it's Mike. "How ya doin?" he says but I can hear so much pain in his voice. "Fine, hun - how are YOU?". I hear him start to sob. "Not very good. When are you coming home?" He NEVER asks me that. I know he needs me and I know he needs me NOW or he wouldn't have asked. Mum is now 7 votes behind. I have to tell her. I have to break her heart. And THEN I have to leave her. "Right now,Mike. I'm leaving right now". I gather my stuff, race over to the candidates' headquarters, quickly explain to Mum what is happening. I feel so bad for her. She, being the mother she is, sluffs it off saying she didn't expect to win anyways - not a big deal. Just wants to go home. Alone. Just tired. Thanks me profusely and insists I go be with Mike. She has seen so many attacks she is worried about her "only son". I break land speed records getting home to find my husband who was 41 when I left now looks 90. He is grey. He is shrivelled from the pain. He is naked, standing in our garage. It is so cold in there you can see your breath. He is sweating. He is shaking. He sees me and disolves in tears. "Just hold me". The attack is at the apex, he has been going now for about 40 minutes. I tell him it should be over soon. 20 more minutes. Hang on, hun. His shoulders are bony - he hasn't eaten much in the last six weeks. The lump on the back of his neck is like a flaming knob - it is very hot, enlarged and angry. He is a small man but he seems even shorter now because he is hunched trying to get away from the pain. I hold him and cry with him. I feel so bad that I have been away. I will NEVER forgive myself for leaving him tonight! I am crying as I write this, remembering the guilt I felt that night. The guilt I will feel for the rest of my life because of that night.
I'm sorry, Mike, I should have been there. I could have lessened the ferocity of this attack. I could have gotten you the ice bag. I would have sent you to the oxygen quicker. I would have taken the business calls so you could focus before the pain got away on you. I could have rubbed your shoulders. But we both know I couldn't have prevented the attack. We both know there is no hope. This is a life condition and we can't make plans around it. Our lives are on hold while the unwelcome Beast visits.
Mike's blood pressure that night was 180/145. His pulse was 130 at rest. I've learned how to take blood pressure now. I've learned how to take a pulse. I am not a nurse, I am a secretary. I've learned how to recognize the onset of a cycle before Mike even realizes he is headed down that road. I've learned to listen to his clues. To leave him alone. To hold him when he starts to cry. To make sure he doesn't choke if he vomits. To come to him when he is getting too violent, too frustrated. When I hear too much slamming, banging, I know I need to rub his shoulders to calm him down. To stop rubbing when he gets too fidgety. CH has been an education.
We got through that night. We always do. Mum survived the loss of the election. She lost by 9 votes. She feels bad that she took me away from him that night. CH guilt is contagious. I am not the only supporter in my family. Our daughter feels totally helpless. The dog tries but he is learning it is better to leave Dad alone. He thinks if he is there with him he can somehow absorb the pain for him. He is wrong. The cat knows. She has her headache hideaways all over the house. The fish just watch. They've seen it all before. They'll see it all again.
We live life to the fullest between cycles. But the time bomb is ticking. We try to put it in the closet and forget about it. But we know it is there. Just waiting for the conditions to be just right.....
How has CH affected my life? It has INVADED my life. It is torturing the love of my life. It will someday rob me of the love of my life. He has asked me to get him a knife so that he can end his life. I refuse. I refuse to let the Beast win. I refuse to lose. The Beast has met his match. ME. I refuse to lose.
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