Friday, March 31, 2006

Follow up to 3/30

I have been very worried that people will be upset or offended by my last post. I have made more changes to that post, spent more time on it, writing what was in my head, changing it, re-writing it again and again, saving it as a draft, changing it agin, then posting it and editing it three times the first day I posted it, trying so hard to get it to express exactly what I wanted it to without hurting anyone's feelings and have had a very hard time doing that. I have spent more time on that last post than on any other in the entire blog. I've been going through a period of anger and bitterness for a few days. I have been through periods like this before, there have been many times throughout these months I've felt anger; anger directed toward God, toward cancer, toward things unseen or unnamed. And through all of that, you have all been supportive of me. Now in this last post, it seems like I am directing anger toward those who have been my supports. I don't want it to seem that way. I hope that nobody takes it that way. I think the periods of anger that all bereaved people go through are frequently misdirected. That may be the case here--misdirected anger. I don't have any concrete place to direct it. Many times people become angry at the person who has died, working through those feelings eventually. But it is impossible to be angry at Theo on any level--I can't possibly direct any anger toward him. Impossible. I don't have that in me. All thoughts of Theo bring with them love, sometimes sadness, but always love, love, love. So, that leaves a lot of other places to direct (or misdirect) angry feelings. Mostly, it does no good at all--it does no good to be angry at God, or at cancer, or at random people. And it definitely does no good to direct anger toward people who have tried to help and support me. It does no good to spew misdirected anger in random directions, but it must be gotten out so that it can be changed to a different sort of energy. That's what I've been trying to do, to get it out so it can be transformed somehow. To something more constructive. And I can't get away from it being there. I don't even know why. There is no one I can justifiably be angry at. I could be mad at God, and have been, but it is pointless and just causes further hurt later, resulting in the inability to have a relationship with Spirit and therefore no spiritual comfort; so God anger must be resolved. And I don't believe God did this. I have to also believe that God could not heal him, or Theo would have been healed. But even if I do get mad at God, at least God understands. Somebody who lost a child told me that she believed God took her anger and turned it around and transformed it , taking it in and then sending it back to her in the form of love and peace and strength. I want all my negative feelings sent back to me in that way. I want to take back the transformed engery and then make it into something good, sending it back out changed again as something good, creative, helpful. Anger resulting from great pain and grief is a necessary thing, usually unavoidable, and it must go somewhere once it comes out. The stages of dying that Elisabeth Kubler-Ross made famous also apply to the grieving and bereaved. I know I definitely fit into one of those stages at any given moment. Denial came and went quickly when I didn't want to believe that my baby had anything wrong with his brain. Sitting on the sofa with him that first morning when our lives changed, watching his uneven movements and his little eyes, one closed, one open, the little voice in the back of my mind whispering "brain problems, brain problems, something is wrong with his brain." I pushed it away immediately, denying it, not telling the pediatrician on the phone, but knowing in the ER I had to say something, feeling terrified to acknowledge the fear that was much more manageable pushed way down and back. I didn't want to believe that his brain would or could be damaged. They kept telling me in the hospital, looking at the scans after the surgery, "We can't say how much damage might be there, we have to wait until the swelling goes down, some of this dark area may be stroke or damage, but could just be swelling"--they had their own medical brand of denial. I don't think any of them really wanted to believe that his brain might be damaged from the tumor and certainly not from the very interventions that had saved his life. When the scan was revealed showing indisputably the extensive brain damage, we were completely surprised, shocked, devastated, all our hope dashed, because we had not been able on any level to acknowledge that in all the previous scans, there were probably signs of that damage occurring, and neither could our doctors, I think. Poor Jamie was there alone when the news came. I didn't want to believe that the cancer would kill him. I didn't want to believe for an instant, until I had no other choice, until we had to make the choice to allow it, to bring him home with us and spare him as much pain as possible, knowing the outcome. But I moved quickly past the denials, thank goodness. That is a terrible place to be: not a useful place to be. You can't even admit that you're there. A good place only for a short time. We are safe and cushioned there for a while, but staying there is very dangerous. We can only come out once we have the strength to know what is true. The rest of the stages, anger, depression, acceptance, bargaining. Those things come and go. We flounder back and forth among anger, bargaining, depression; all of which include a good deal of fear. All those things come out of fear. That's why love and support can bring you out of those dark places. Love cancels out fear. I don't even know if we ever get fully to acceptance. It certainly doesn't feel that way right now. Do I accept that he is gone? I know that he is dead, but I don't know when I will be able to say that I fully and peacefully accept that. I don't know. Maybe knowing it and sometimes (when not angry or feeling depressed about it) feeling peaceful about it means acceptance. I don't know. I know these stages don't occur one by one in stages, they come and go. Anger is one of those that comes and goes, usually, for me, quickly.

I apologize if I hurt anyone's feelings or caused any discomfort or pain with my comments on the last entry. I don't want to make excuses, but I am anyway. They are, at least, good ones. I don't have a choice but to go through these feelings. Anger, misdirected and otherwise, happens through the process of grieving. The work of greif can't be done without the negative feelings that are part of the process. Anger is one of the chief negative feelings. Eventually the negative and difficult feelings have to come out, the fear, the anger, the sadness, the pain. Otherwise, those angry, depressed, desperate feelings stay bottled up and eventually start to wear away at the heart. I can't keep bad feelings inside, I have to let them go and let them be changed to something else; hopefully something that can do some good; for me, for others, for some constructive purpose.

I hope that you can bear with me. I do appreciate and need support from all of you, in whatever form. Whether you email me, or post a comment or pray for us or meditate on us, chant for us or send positive, strengthening, peaceful energy and light.
We still need your love and support. Thank you.
Love to you,


Anonymous said...

Hi Karla,
just read your latest blog about anger and apology for hurting folks feelings with previous one. I think your anger was constructive with your list of "don'ts" in talking with bereaved people... all that stuff people say about "another angel" and that "God wants the child"... those kind of commets are based to delusion, or wrong thinking. I think people do this in order to comfort themselves and the breaved people, but it doesn't really work. It's just insulting.

At this stage of my life, I'm trying to live in the mysteries, the contradictions, the questions that have no answers. Being willing to accept that there are many mysteries helps me. Part of that means realizing how little control I have over events. Some of my anger at horrible things happening "to" me was about my lack of control, the fact that willing it to be different never worked. "It is what it is" keeps coming back to me.

For me, the Buddhist view offers the most relief from suffering, espec. the idea of secondary suffering.. . Buddha talked about the initial suffering from "old age, illness, death" which is unavoidable, then humans add a second layer of suffering... it's the second layer that we can change. Understanding that there's no blame... God didn't do this awful thing, you didn't do this awful thing.
This awful thing came from "causes and conditions" beyond our control.

On one hand the universe feels scarier without a God to petition, to appeal to, to blame, but on the other it's a relief. There's no God to give the anger's ours to work with, just as you are doing. Writing, walking, talking, etc. Sometimes anger can be transformed into a different energy. . . many movements such as civil rights, feminist rights etc. have been powered by people who got angry.

When I used to get very angry, I'd walk a lot...every footstep pounding the ground seemed to help. Each person finds their own ways to deal with anger.
You're right, anger comes in waves, then the waves recede, come again and this time they look a little different, they go, come again, etc.

You're in my thoughts, prayers and meditations.

Anonymous said...

Jeez, I think the last thing you need to worry about is offending people! But you know, my dear friend Jeanne, who died complications from cancer -- of a tumor on her veterbrae, she tried to write a book telling people what NOT to say to their dear friends who were diagnosed w/ inoperable and fatal cancer. You'd be surprised -- or perhaps, you really wouldn't, know that you've probably heard it all, too.
In any case, I think what you've written is helpful in a very practical way -- and also what most of us need to hear. We're not good at talking about difficult subjects, and we're particularly not good at listening and seeing what it is other people NEED. We like to offer solutions -- even when there aren't any.
Anyway, I just wanted to weigh in -- no need to feel guilty at all. Thinking of you and Jamie lots.
love, Patty

Anonymous said...

Dear Karla,
I can't even explain to you how horrible I feel about the heartache that you and Jamie are feeling. I feel even worse about the fact that I can completely identify with those people who sometimes say the wrong thing at the wrong time. It's very difficult to express the grief that I feel for you and your family, and I have never even met you. I remember the first day of class, wondering why my teacher had not come. And when I finally heard about what was keeping him away, I think part of my innocence died that day. Being a mother to two beautiful little girls, it just cut through me like a knife. Aside from that, my husband has an inoperable brain lesion in his brain stem and has a shunt, which he had to have revised just about a year ago. I remembered the feeling of sitting in the hospital room as we waited for the doctor, hands sweating, thoughts racing...I was pregnant and my oldest was just a year old. How could this be? I tried to not think of what it would be like to raise my girls without my husband, telling them stories of how we met and what a wonderful man he was. I suppressed the fear as he looked to me for support, and faked it as I went along, telling him how everything would be ok even though I felt like screaming. Also, as I read your thoughts, I remember what it was like when I could not get pregnant with my first child, and having to try for two years while everyone in the world seemed to get pregnant. I remember telling people not to send me any more baby shower invitations. I cried when I saw pregnant women, envying their blessing. It was hard to be completely happy for my friends when I was so broken inside. I saw babies everywhere, and I felt as you did one day, as if they knew that I was a mommy without a baby. I can't even count the many nights I cried myself to sleep, the many pregnancy tests I took while I prayed for those two little lines that never showed up. And all of that heartache doesn't even come close to what you are feeling right now after losing Theo. I often run my fingers through my girls' hair as they sleep and think of Theo. Why? I ask myself as well. I try to put myself in your place, but it embarrasses me to say that I find that it is much to painful to even IMAGINE myself burying my child. But I can tell you that Theo is a part of my life and I never even saw his beautiful face except for in pictures. Theo is alive in my heart everytime I see my babies laugh and play, because I know how blessed I am, and Theo's life has opened my eyes to those things that are so important and so often overlooked. I guess we all just WANT to think that Theo is in a better place because it is what he deserves. I think most of the grief that I feel comes from knowing that the pain is still present in YOU. I wish I could take it all away. I wish that I could have prayed harder and that Theo could have been saved. I wrestle with those thoughts every time I visit this site. I sometimes read your old comments, from when Theo was first diagnosed and how you sounded so optimistic, hoping that all would be well. And I feel my heart sink as I read them, knowing how the story unfolds. I'm so sorry to make this so long, but I feel like I just had to let all of this out...I never thought that I could grieve so much over someone I never met. And yet here I am, once again, crying over my computer and wanting nothing more than to wake up tomorrow and have this be some horrible nightmare that never happened, and to go to school and see Jamie and finally get to meet you and your baby boy. In closing, I have to say, regarding the comments about whether you will have another child or not, that is entirely up to you and should not be a topic for discussion for other people at this time. But I have to say, you are tremendous parents and I could think of no greater gift a child could have than to be able to have you as parents. Please keep writing, and know that Theo is not only alive on a day to day basis in your minds and hearts, but also in those of so many out there. Chances are, every time you think of him, one of us is thinking of him, too. What a wonderful legacy his short life has left us. I miss him, too. And I will never forget him as long as I live.

Betty said...

I Peter 1:19
"as a lamb without blemish, without spot"
Jesus was pure, Jesus was innocent, yet He had to suffer and die

Romans 8:32
"He spared not his own Son"
God knows our pain

Matthew 27:46
Even Jesus asked "Why?"

Romans 8:18
"all things shall be revealed"
Someday, we will know all the answers to all the questions

Psalm 138:3
"I cried and He answered"
Maybe not in our time or in our way, but He WILL answer

I believe God has a path just for you. He will not waste your pain. He will not ignore your grief. He holds you in the palm of His hand and He will NOT let go of you!