Alone, Part 2

What fabulous comments on my last post...I received several in private email as well. As always, thanks to you all for the support.

I do feel it important to clarify, however, that my many theist friends are not at all excluding of me, or proselytizing, or in any way pushing me away. Many many have been so helpful, and supportive. I guess it's sort of a cultural difference...a different map of the world that makes me feel isolated. What they turn to for comfort is not comforting to me.

There has been the occasional acquaintance who says something useful like "How can you believe you'll never see him again? Wouldn't it soothe you to know that you'll see him again in heaven?" to which I (would like to) reply, "I'd like to believe he'll be alive in my Christmas stocking on December 25, but that doesn't make it so." The truth is that I don't believe I'll ever see him, hold him, talk to him again. I think when you're done, when the neurons in the brain stop firing for long enough, that you're gone. What many see as the soul, I see as physics.

In so many ways, I think this is liberating. As a commenter noted, there is no "why" in physics. There is no blame, there is no plan. There is random chance that a cell in Henry's brain underwent a genetic transformation after which it no longer obeyed the laws of it's fellow brain cells, and grew and grew and grew until it killed him. It happens predictably, based on probability. There's nothing and no one to be angry about. I got to skip that part of grief.

There is of course a flip side. When there is no god, no one skippering the boat, the question of futility looms large. Perhaps that is something that theists struggle with as well....my guess is that it has a different flavor.

I appreciate all of the support and suggestions, there were several leads I hope to pursue.

Alone

In the final analysis, we are all really alone.

Sometimes I feel more alone than others.

I have a very supportive family, and a wonderful network of friends.

The grieving support group has provided me with another group of people who can relate to me and to whom I can relate in ways that my friends and family thankfully cannot.

But I have yet to happen upon another non-theist** who has lost a child.

I've read, and continue to read, several blogs of parents who have lost a child. Most are openly religious, in a structured sense. Church, prayer, reading and quoting the bible. Some are less structured, and appear to believe in god but in a less formal way. Angels, seeing loved ones in heaven, more prayer.

Allow me to formally digress into a disclaimer. I have nothing against religion. It is a useful and powerful tool in the lives of many, including many people whom I love and respect. It's just that I don't believe in god, and I can't imagine ever believing in god, just as strongly as those who do fervently believe in god can't imagine not doing so. It's part of the deep fabric of my being since I went through my own self-directed religious journey in my late teens. It may be arrogance, but I think that I've thought about god a lot more than many people who believe in god.

Anyhoo, I feel like the only one (my husband excepted.) I haven't met/read/heard of a fellow non-theist grieving a child. Of course, they exist...they must. I wish I could find some. We as grieving parents have so many emotions and experiences in common; our real and cyber-relationships are so supportive. But I get lost, feel shut out at times, when the healing turns to god and the relief that people seem to get from that belief and relationship. I just can't go there.

Where is the nearest Pseudo-Buddhist Non-theist American Grieving Parent support group?




**My newly preferred word for my belief system. Atheist is so loaded these days. I'm not anti-god, I just don't believe in one.

The end of Dr. Smak?

I'll skip to the end. I'm not going to quit blogging. Yet.

This blog is faltering for me. Like my life over the past few years, it has changed into something altogether different than when it started.

Initially, I started blogging after finding I really enjoyed the medical blogs I was reading. There's a camaraderie in medical blogging that was fun. I was new to being a family doctor, and found delight and wonder in my day to day interactions with patients.

Just as my creative juices for medblogging were beginning to dry up, Henry got sick. I really didn't intend for this blog to turn into my group therapy sessions, but somewhere it did. It's hard for me to put into words how valuable this, and you as my readers, have been through the last 2 years. There was such relief in getting my thoughts and feelings out into the keyboard, and such support with each comment left.

This stage seems to be evaporating as well. My emotions are more stable, less intense, and more consistent. Predictability does not make for interesting blogging. For two years I've yearned for predictability; I'm not complaining. But I find my inspiration for blogging has diminished.

So I'm not sure what to do with Dr. Smak. She loves her patients, but finds it less and less often that they surprise her (at least, in good ways that are worth blogging about.) She misses Henry, but there too finds that the poignant moments or memories are more and more rare. She has lots more going on in her life, but does not think much of it of interest to her blog audience.

In short, I'm still blogging. But less.

The Greatest Generation

Dr. Smak: So I understand that your back has been hurting for a week?

85 year old with hearing aid either broken or off to save batteries: Huh?

Dr. Smak (yelling): Your back has been hurting?

85 year old: Yup. I think I might know why.

Dr. Smak: Why?

85 year old: I dug 100 bushels of potatoes out of the ground last week. Do you think that did it?

Dr. Smak: Yeah. That might have done it.


Folks, they don't make them like this anymore.

Standing water

Several weeks ago I mentioned that I was doing much better. Grief cycles seem so cyclic, I was a little afraid that I was just in the middle of a few good weeks, but the pattern has persisted, for which I am thankful. For a long while, the waves of grief would hit, unpredictably, intense, for hours or days, so intense that it almost translated into a physical pain. That doesn't seem to happen often anymore, and when it does, I don't feel so lost in them that I can't find my way out. The feeling is familiar, and while not pleasant is welcome as a part of me, a part of my loss of Henry.

I feel much more myself, with all of my assets and handicaps intact. I'm back to forgetting friends' birthdays (never really stopped that, but I had an excuse), avoiding exercise, actually caring enough about work to let it stress me out. Regular life stuff.

But it feels as if I am walking in three inches of standing water. It's not harder than it is for everyone. I'm not debilitated. In some ways, especially parenting, I think I'm doing a better job than I've ever done. But every time I move, every step I take, every thought I have is followed by sadness that he's gone.

I wished and wished for some relief when the grief was so intense. Sometimes I did not feel like I had the strength to carry it much further.

But I don't honestly know if this stage will ever pass. If it doesn't, that's ok. This is something I could do the rest of my life, hearing the splash, watching the ripples every time I move. Maybe I don't want it to go away?

Ringing the Bell

My last post generated some comment conversation about Henry ringing the bell. I thought I'd give some details.

Henry's radiation at Hopkins took place in the same arena for kids as well as adults. He received excellent care there. We felt so very well cared for everywhere we went at Hopkins.

The radiation oncology suite for me was an odd place. There wasn't much privacy, and since Henry needed to have a general sedative for each session of radiation, we were often there for 2 hours to get 3 minutes of radiation. So we met a lot of people.

The first group was what I called the Prostate Club. I of course have no idea what their diagnosis was, but there was a steady group of well appearing sixtyish looking men in their business suits who would show up in the morning, quietly and without speaking change into a hospital gown, enter the radation room, and be off to their day. Then followed a motley crew of outpatients who showed up in various degrees of health, some in wheelchairs, mostly walking but looking tired, for their treatments. Occasionally, an inpatient rolled by in a stretcher, usually looking pretty sick. Sometimes we chatted and got the story, always sad, and sometimes they were too sedated. Everyone smiled at Henry (which is not to say that he always smiled back).

Near to the treatment rooms was a bell on the wall. When treatment was over, you rang it. I'm not sure if it was a thankyou or a f*ckyou to most patients, perhaps a weighted combination of the two. We saw many people ring that bell, from the prostate club to little old ladies clawing to get out of their wheelchairs and ring that thing. The staff, the patients, anyone around would stop and clap everytime it rang.

Henry loved to watch. He knew he would get to ring it on his last day. He used to whisper to me so no one could hear, "She got to ring the bell. I'm gonna ring it three times."

He didn't ring it three times. He rang it four times.

This is the poem that was posted next to the bell. I don't have a good shot of the bell. I'm not sure why he looks so serious in this picture, he was all smiles this day.

Tomorrow

Tomorrow is the two year anniversary of Henry's diagnosis.

This time of year is so hard. The smells, the leaves turning, the crisp air, all brings so much back. His diagnosis, his surgery, our utter shock and horror, and then his relapse the following year coinciding.

Halloween is even worse. For the last two years I've put on a strained happy face so the kids could enjoy it, hating every minute. Henry was so scared in 07, it was just after his craniotomy and he felt awful. Last year was our Disney trip, we were trying so hard to feel happy, especially for the girls, but he again felt terrible.

This has been a hard week. A dear friend has received some bad health news related to her own child. I can feel her anger and confusion, it mirrors my own two years ago.

We have our bereavement group again this week, I have been looking forward to it since the last one. I'm hoping for a little relief.