November 7th, 2006 by Atomictumor
In a lot of ways for me, hope is harder than grief.
Obviously, hope is superior. Hope is greater, hope is wonderful. Grief is a dead end. Grief is finished, its ended, the story is over. Grief is dealing with closing the book, and trying to find another one. Grief is black. An absence of color.
Hope is white, its all of the colors. Hope is every emotion, wrapped up. Hope is as nerve wracking as grief, but hope demands that you keep the book open, and find more pages. Hope is demanding. Hope is impertinent.
What I told GAC, this evening as I leaned over her, and waited for words to come, was that hope leaves you open to fear. I probably shouldn’t have told her that. I’ve always been so open to her, and I’m afraid to death of distancing myself from her by keeping my fears and thoughts and dreams from her.
A thought for this evening, as there is so much hope, and so much good news, is looking to what happens next. Will GAC still be GAC? I’ll love her no matter what, but what if she doesn’t love herself? What if she is bitter, and angry, and hates the world that I begged her to come back to? How, after coping with this, can I expect her to do it?
Would I get her back, just to see her go? The thought haunts me. Its a cold, cold, bitter chill. Her death didn’t do this to me. A life that she wouldn’t want, oh god, is so much worse.
But look at me. I’m succumbing to doubt. There is nothing to fear, nothing to doubt.
Sorry Thom, but its not working today. I doubt, and I fear. Now that I’m not being as strong, hoping she lives, or maybe now that the shock has worn off, grim realities are setting in.
I haven’t sobbed today. I teared up, and I couldn’t speak a few times, but I didn’t cry.
I think of the Monkey’s Paw. The son came home, but wasn’t the son.
God. What will BJ say to this? Why the hell even post this? Can you help me through this, because my newborn faith is failing. I don’t see the beauty everywhere.
And how stupid is that, as BJ is healing? Am I letting myself see what I wouldn’t before? Am I deluding myself now, or then?
What the hell is wrong with me?
Don’t answer that.
—
Sweet girl.
BJ’s dialysis pulled 4 liters of nastyness from her. She’ll have some tests pulled tonight, to see where she’s standing, and I’m sure I’ll tell you about them when I hear.
Her numbers were all great. BP 94, pulse 120, Oxygen 96, temp was 98. White blood cells were 26,400. She’s on 75% oxy, which is good news. She’s not needing the vent quite as much. We’ve done this dance with the vent before, going down to 50, and back up when she starves for oxygen. Urine output is good.
—
I’ve been angry today. I’ve been angry at myself, and angry at blameless parties. Yesterday I predicted weakness, and I saw it.
I’m going to be brutal on myself, and on this website. If I just put the current status on, and a piece about how the boys are (fine), I wouldn’t be me. Many of you, most of you, are prepared for it. Some of you aren’t. If you are uncomfortable with foul language, do me a favor, and don’t read this page.
I’m going to curse many things. If your faith is such that you want me to join you in labeling, indexing God, or Allah, or Vishnu, or whatever, kindly keep your comments to yourselves. I’m not interested in evangelism, or fundamentalism, because I think it is at best closed minded, and at worse downright wrong. I’m not interested in hearing that there are reasons for this, or about greater plans. It doesn’t help. If there are omniscient plans that involve what is happening here in my life, well, I don’t give a damn. Maybe there is, maybe there isn’t. I’m open to hear from the higher power, but not from man.
I’m angry. Now that we are somewhat out of the woods, I guess my mind is letting me be. Or maybe its just tonight. I don’t like it. I’d prefer the grief, the sobs, the pain.
I’m not feeling pain now, just the urge to hit a wall.
I don’t even want to say my dumb mantra.
Nothing to fear, nothing to doubt.
Indeed.
BJ, my girl, I’m sorry this happened to you. I’m so sorry. You never deserved this. You should be here now. We should be in bed. We should be ready for work and school tomorrow. You should have your beer chair done. We should be putting gas in the van.
Instead, your right hand is blackened. You have a 6 inch long scar on your stomach. You have more tubes than I’ve counted in your body. You have machines in your heart.
Oh BJ. Not my BJ. I love you so much, so very much. I feel so far away from you.
Why?
Please God, bring her back to me. I want her back, so very much. I love her so much.
NTF, NTD
November 7th, 2006 at 11:20 pm
AT,
I hear what you are saying. I have spent the last 18 months wondering, doubting, angry. I don’t know how to help you, except to say do this…feel this….say this. There is nothing wrong with it. I came away from my experience with a much greater faith in miracles, but actually (considering my previous job as a youth religious ed teacher) with less faith. I think it was all the times I heard “God won’t put more on your shoulders than you can handle” That is just bullshit. I couldnt handle that, I shouldnt have to and neither should you. Keep going and feeling and venting, it will keep you sane. Oh and GAC hopefully will read all this and laugh at your from the beer chair (?).
November 7th, 2006 at 11:27 pm
We and our on and offline friends are still praying for her complete and total recovery, as well as your strength and for your family. Good to hear that the medical news is still going good. We are not trying to evangelize, just support you and yours in prayer. Stay strong, be courageous and know we are praying.
November 7th, 2006 at 11:27 pm
OK, lets step back for a moment from the emo wall.
I am, to summarize, wanting everything my way. I want God to keep her alive, and I want to go back to the pure secular life I enjoyed during our entire relationship. I’m not a person to whom faith comes easily. I despise the people that hammer you with God. God, to me, is a friendly little dwarf. Not a big guy with a beard who smites mennonites.
Furthermore, I’m telling God “bring her back”. She is, as we speak now, brought back. Now I’m saying “keep her my Bj. Don’t change her. Don’t have her mind/self-image/spirit hurt like her body’s hurt.”
Perfectly reasonable requests out of an omnipotent creator.
I talked with Mom about this today. That BJ may wake up, and hate it. She may not have a hand, or feet, or legs, or kidneys. She may not be able, EVER, to finish her school career. She may not want to grow old with me.
This is a whole new acceptance thing. How can I almost see her die, and then try to accept the idea that she may not want to live?
At the same time, shit man, she may be reading this now (then), with self image problems, and my fears may eat right into her.
I don’t know what to do.
Geez, that really summarized things?
I wish she’d tell me what to do.
November 7th, 2006 at 11:31 pm
I love that…the emo wall. Just put your fist through it and be done. Or keep it for later. There is no right or wrong, you will love her always. Who was it that said: It will be ok in the end….if its not ok, then its not the end. I don’t know why, but I like that sentiment. I hope I didn’t add to the emo moment, just trying to support.
November 7th, 2006 at 11:31 pm
You may be right AT. Dealing with hope must be tougher than dealing with loss. With loss you know what you are dealing with, with the hope stuff, anything could happen.
From what you have written in these pages over the past several days I have no doubt that you are strong enough to deal with your hope.
Just as your friends have offered their shoulders, their prayers and their love as you have dealt with your impending grief; they will be here through your hope as well.
You are blessed to have hope pal. We all are. Tonight we all have hope.
November 7th, 2006 at 11:32 pm
Her return won’t be a cakewalk. She’s been through hell. But look at all she has waiting on her. The love, the support, the once-in-a-lifetime-undeniable affirmation of her importance in so many people’s lives.
I hope I have that, but I don’t really ‘know’. BJ will KNOW, beyond a shadow of a doubt that she is loved, wanted, embraced, important. That’s life.
Don’t worry, she’ll understand.
November 7th, 2006 at 11:33 pm
I know Frank, and prayers are so good. When people tell me they pray for her, it means you don’t have the hang ups here, and you’re doing what I don’t know how.
I’m getting used to learning how to say things like “God is keeping her alive. God is bringing her back. God is all she has now”
I don’t want to mean it, man. Does that make sense? It was easier when I was just somewhat in tune with some form of higher power, that I’d get back to one day.
That day was Friday. A week later, I’m not desperate (as much so, she’s still so very critical, and very much at death’s door), but I have to keep with the fact that I will bea believer in God, whether I want to or not.
At the same time, the whole mental conversation seems as moot as hell, but I can’t stop thinking about it when I see BJ.
I’m all messed up.
Today wasn’t as hard as yesterday, but I’m making it harder than it needs to be, and I can’t stop doing it.
I’d sleep, just to end the day, and because I find I can cry in the morning, and that feels so good, but I don’t want to sleep.
Arg.
November 7th, 2006 at 11:35 pm
“BJ will KNOW, beyond a shadow of a doubt that she is loved, wanted, embraced, important. That’s life.
Don’t worry, she’ll understand.”
Thats what I want to sink in, but I’m too damn dense for it to do so.
Marladusa, I wish I had met you before this. You’ve been here since damn near the beginning, along with Frank, and Bob, and I’m sure many others, and you’ve helped.
I don’t know you, but I will, I hope.
Heh…
Theres more of that hope stuff.
November 7th, 2006 at 11:36 pm
AT, I wish I had some answers for you, some kind of wisdom that would give you peace.
I think you are amazing, and handling this better than most of us could. When hope eludes you, we will hope for you.
Thinking of you and your family all day.
November 7th, 2006 at 11:40 pm
Well no one completely believes in God overnight AT. It takes time, there are mighty struggles and many starts and stops normally. The thing is to keep moving forward in faith and trust God enough to let Him show you what He is doing, where He is doing it, and why He is moving. NO ONE understands God completely or totally. The Bible tells us that His ways are not our ways, His thoughts are higher then ours, etc.
Bottom line take it slow and trust as you can. Just don’t give up on Him when this is over with and BJ is back with you regardless of her condition.
We will be praying for your newly found spiritual condition and situation as well as BJ, the kids, her school, your extended families. Our request for our visitors have been at the top of our blog all day and will remain their until BJ is out of the woods. Prayer changes things and we are continuing that in faith.
November 7th, 2006 at 11:45 pm
I came here via BusyMom and I am so sorry to read all of your life’s recent events. I am truly amazed at your strength. I can read all of your frustrations and fears and yes, you have the right to be angry. Neither you nor your wife asked for this and it has certainly thrown a monkey wrench into your life plans. I have come to learn that what happens in life is often far out of our control. We can hope and pray and hope and pray and it sounds like there is alot of that going around for her (and you and your family too) No one has the answer as to why this has happened, no one. But it seems to me that you love her dearly and she definitely knows it and she is obviously very strong and is fighting very hard because she is still here and has made some improvement. She will be amazed at what you have had to say. I know from experience that putting thoughts and emotions into words can be a very powerful tool for dealing with personal issues. It helps. So keep writing and it will keep helping you. And your strength will strengthen her as well. Feel however you must feel, do whatever you must do, deal with it the best way that you can because dealing with the emotions, no matter what approach you take, is the best for you, her and your kids. And don’t be sorry for or apologize for what you are feeling. Those emotions are yours and you have every right to each and every one of them. I wish you the very best of each day to come. You, she and your kids are all in my prayers. I will be tuned in to see how she is doing. Leslie
November 7th, 2006 at 11:48 pm
A new friend understands when you don’t trust them all at once. It takes a relationship. Faith is the same way. You’ve got an amazing amount of people pulling for you and GAC. The God I know doesn’t do the Monkey Claw thing. He does the … Surprise, bet you never thought this would bring such joy … thing.
November 7th, 2006 at 11:49 pm
I hope I didn’t sound too negative. I think your emo wall set mine off again. I may not be as healed as I thought. I didn’t mean to say I lost my faith, far from it. It is just different. It seems like before it was real and thought out, but now it is indescriptive and fuller. You and your family are in my prayers. Miracles do happen. Keep believing and fighting, both of you.
Vickie
November 7th, 2006 at 11:52 pm
Thanks, all of you. Leslie, and Allisone.
You’re absolutely right, and both of your gifts for words conveyed exactly what I needed to hear.
November 7th, 2006 at 11:57 pm
Thoughts are energy. Like attracts like. We are achieving a critical mass of good intent here. I’m heartened.
November 7th, 2006 at 11:58 pm
I too came here from BusyMom’s website. I would like to thank you for sharing all of this. I am in awe of your ability to write with such emotions. Most men wouldn’t do it. You are entitled to your feelings and to express them in any way you see fit. I commend your courage and I wish you and BJ all the best. I will keep your family in my thoughts through out this tragic event.
Beth
November 7th, 2006 at 11:58 pm
Al Gore would be proud.
November 7th, 2006 at 11:59 pm
I see you have deleted my comments here and on the previous post. I am new to this and never delured before. I have obviously crossed some line or did something wrong and I am so sorry. I wish I could email this apology privately. I am sorry for whatever I said or did. My prayers will be with you and yours still.
Vickie
November 8th, 2006 at 12:07 am
AT,
I see you have deleted my comments here and on the previous posts. I have never delurked before and probably crossed some line. I just wanted to apologize. I have no idea what I did, but that doesnt mean I didn’t do something. I am truly sorry, I tend to step on peoples toes when I never mean to. Wish I could apolgize privately, but since comments are moderated I hope you will see this and kno my prayers are truly with you and your family. Take care.
November 8th, 2006 at 12:18 am
I am not well versed enough, nor I attend church enough to evangelize, only to say that out of all of this it is good that you have found faith instead of turning it away. As I drifted off to sleep last night, I prayed for your wife and your family.
I don’t know why we find certain people or read certain stories or why some touch our hearts more than others. As I prayed for you I said, just by reading what he writes about her, I can feel his love. If it can come through a computer screen, I know that she feels it when you are with her. Together, you will get through the recovery, just as you have gotten through the darkest hours. Continue to have faith, as others have faith in you.
November 8th, 2006 at 12:19 am
You’re welcome. Anytime. But please remember that the best way for you to handle all this is to be the best you. That means SLEEP!!! Sleep is SO VERY important. And take care of yourself so that you can remain strong. You’d be amazed at how your own immunities can weaken in an emotionally traumatic situation. Yeppers! It is true. And I am not even a doctor! who’d-a-thunk?!?
November 8th, 2006 at 12:21 am
Don’t apologize for your feelings. Don’t try to explain them away. Feel them. You talked about living and beauty a few posts ago… feelings are part of life. Feel them.
As for the God thing, I’m afraid I can’t help you. But don’t we all want that from him? Wanting one thing, and then another? At critical moments, you just want her to live. When reality hits, you want her to always be her. Makes complete sense. Don’t sweat it.
November 8th, 2006 at 12:28 am
Hey, whatever you are feeling is OK (um yeah, as if you needed to me approve), doesn’t matter what it is. Perhaps it’s just that the numbness of the whole thing is wearing off?
Though I struggle with it myself, I am gradually learning that one day (sometimes one minute) at a time is really all we can do.
Keep up your mantra. If you don’t feel up to it right now, I’ll hold onto it for you, I think it will come in handy later.
November 8th, 2006 at 12:31 am
Miracles happen and I am expecting one. BJ has so much to live for and I believe she is coming back. I believe that God will not desert you. He does not bring you this far to leave you in the lerch. Don’t get overwhelmed in the doubtful details of “what if’s”. One day at a time. You have already come avery long way and your will and strength is reaching out and helping BJ to find her way. Lean on the strength of our prayers. They are here for you and your family.
November 8th, 2006 at 12:53 am
I can imagine that the road ahead must be terrifying, even with the relief that she will be there with you.
You know, even if GAC regains full function of everything, she’s not going to be the same after this - neither are you. But you will continue to be in love with each other - that part doesn’t change.
(backstory: I had a bad fall last February and ended up in the ICU with a blood clot in my brain - it wasn’t as critical or as prolonged as your situation has been, and now my functioning is pretty darn near where it was before, but it affected both me and my husband profoundly).
November 8th, 2006 at 3:03 am
I don’t doubt that the road ahead’s going to be tough, AT. The road up to this point right now has been absolute hell, but GAC’s made it and you’ve made it. GAC will triumph over this and emerge a changed person (I think we’ve all been changed by this).
Life will be hard, and life will be beautiful.
Take it one day at a time, and know that we’ll be here along the way.
November 8th, 2006 at 5:29 am
Stay strong. There will be many emotions coming through as GAC heals. Sadness, anger, denial, acceptance. There’s one more somewhere in there but I can never remember what it is. You are a fighter. You’ve fought hard for her. She too is a fighter. She fought hard to stay with you. She knows that you love her and if she has any resentment about a scar on her tummy or any other long-lasting side effect of this illness then it will be for the illness. This strange and horrible invader did these things to her. Not you. You fought for her, not against her. I’m betting that both of you, later, will realize this. You seem like smart people to me. The physical scars and reminders that she’ll carry are battle scars. Be proud that you both have fought for love, family, togetherness and are WINNING. Battle wounds are woundrous things to remind us how much we care about others, how much we will take to keep that together, and how we didn’t give up.
My prayers are for you and your family today.
November 8th, 2006 at 5:30 am
“and I want to go back to the pure secular life I enjoyed during our entire relationship…”
My dear AT, you know life will not be the same as it was before. It would be pathetic if it was. Once all of this is said and done, you and your family will have gone through something many of us will never be able to comprehend. They don’t call things “life-changing” for no reason. Every aspect of this awful experience is scary. The thought of recovery is scary. That’s okay. But along with your black, twisty, emo thoughts, allow a seed of “maybe we will come out of this with a new view of life.” Would that be such a bad thing?? Even if you’re not praying, my love, you have so many people that are. So many people love you enough to pray for not just her healing, but YOUR healing too. I praise God for how he’s using this awful, gross experience to bring together so many people. There is something that makes people care. Something that makes people pull for you and her recovery. Human kindness? But where does that human kindness come from?
Anyway, I love you dearly and you’re always on my mind and prayers. I hope today is even better than yesterday. And please don’t feel bad for missing her 3. She would probably call you out on being too darn bubbly anyway.
November 8th, 2006 at 8:37 am
Bullet, you’ve hit the nail’s head (along w/ so many others on this thread). We don’t know where this road is taking us, but AT you’re not alone.
And don’t write grief off. It’s ok to grieve the loss of what you and GAC had before this sickness. Grieve, experience that grief, but don’t get bogged down in it.
November 8th, 2006 at 11:35 am
Hey AT, this is some of the most open and heart felt sharing of what you are going through. You are going through so many phases even at the same time it seems and that happens when dealing with such tragedy of someone we love so much. It is so hard to see someone you love go through hell and can’t seem to do anything to help them or even take their pain away. Your continued love for her, your sharing on this site is helping to deal with things and it gives us a chance to stand there with you - like others have said, you are not alone and we will be with you all the way through this ordeal. Hang in there - it is ok to grieve and we all handle that is different ways and it is still ok. Just don’t keep it bottled up - that is where the danger is - you are letting a part of you go and giving us a chance to hang in there with you. Take care and we will keep the prayers going for complete recovery. BJ, we love ya and thinking of you. Don’t forget AT, we are here for you.
November 8th, 2006 at 12:12 pm
Don’t keep it bottled up has been a way of life for me in a big way, that I might explain later. However, I’m in more danger of creating more than I need. I’m one day at a timing now, and loving it.
Bullet (love the name, BTW, I cackled the other day when I figured it out), you are so awesome. She’s my little sister, everybody.