Saturday, February 27, 2010

Fight Club

Fight Club Soap
Originally uploaded by

Yesterday I received a message from one of Michael's prior coworkers. She was letting me know that a group of people in the office have decided to participate in this years Brain Tumor Walk. She was wanting to know if I was putting together a team, as I had done that past two years. She said they would be happy to join my team, or I could join theirs if I decided not to organize a group this year.

I was glad that I had been so busy at work Friday, otherwise I would have had time to pick up the call, and be forced to deal with something I have been avoiding for some time. The Brain Tumor Walk in our area is a very nice event. They hold in Golden Gate Park, and have lots of activities and food throughout the day. Both times we participated, we were able to raise a good amount of money, and it brought our family together to show Michael how supported and loved he was. There is always so much great energy with the group of people participating. I always see many of the people I have come to be familiar with from various support groups and hospital waiting rooms. There are many doctors and nurses from all cities that make up the Bay Area.

What makes this difficult, of course, is that like many others I have come to know, Michael succumbed to his brain tumor. During the past two years of our participation I have looked on at the families that make t-shirts in memory of the lost family member. They always seem to have such a wonderful and caring appeal to them. I have watched them carefully of course, as I wondered when that would be me.

I remember last years walk, and how we were able to have Michael's mother, brother, and his kids, join us. After the walk everyone came over to our house for a snack, and to rest a bit. We all talked about how much fun we had, and that we should do it again next year. At one point Michael's mother turned to her young grand-daughter, and asked if she wanted to participate again next year. And as child often speaks, without filtering anything out, she responded "sure, if Uncle Michael is still alive."

Well, of course this brought the room to a complete silence. Michael's mother quickly admonished our niece for saying what she said, and everyone else quickly changed the subject. So, here we are. I is the next year, and Michael is not here. I'm afraid of asking my mother in law if she wants to join his coworkers, as she will be put into the same situation I fear. I feel that I need to make a decision on my own, then present to her what I have decided for myself. This might make the question easier on her.

In the months since Michael died, I have thought a lot of how I was previously immersed in the 'brain tumor community,' and now completely not. In the two years that Michael battled his tumor, I have become a bit of a lay expert on brain tumors and care giving. During those two years I thought I would continue to a part of this community in some way, but in my grief I have chosen to apply some distance.

Now, I know that I should only do what I feel emotionally ready to do, but this feels like the time to make a decision. Ideally, I would like to see myself as one of those family members who continue the fight for the lives of others, but I also do not want to do it at my own expense. It is so hard to know what I am ready for. I don't always know until I am actually doing whatever it is. At the same time, I also don't want to think of myself as someone who became so defeated by this type of cancer, and who ran off away from the fight.

I'm also not very good about asking people for donations. Rather than asking everyone around me, I would usually just hit up my family members, and write my own check. It was hard enough asking people when I felt strong, and was fighting for my husband's life. I'm not so sure I can do the same as a widower who lost the fight. Yet, I am very aware that without us widows and widowers, the only people fighting this fight are the newest victims of this terrible disease. Brain tumors, at least in my experience, are a disease with a high turn over of casualties. Every time I went to a group, or a conference, sure enough, half of those in attendance were missing the next year. Michael, and I, are now counted in those previously involved in the fight against brain tumors.

Now I am a widower. Most of my free time is spent addressing my family's loss, or writing about my experience as a widower. It is my new identification, and I am becoming more comfortable wearing the label. In a way, choosing to participate in this fundraiser will push me to start refilling some of the gaps. I just need to decide if filling the gaps is what I want to do.


  1. i like your idea of deciding what you are going to do before you present it to Michael's mother. it will be hard for her and if you giver her options, she can simply pick one.

    my mother was the first of us to die and it was very hard on my grandmother, her mother. she was frail herself and needed her daughter. having to watch her die was a cruel act of fate. six months to the day after my mother died, my grandmother died. my father did not filter his comments in front of his father-in-law and chose to say, "she let herself die. she wanted to be with (my mom)." the doctor heard this comment and saw the pain it gave my grandfather. this doctor moved to stand directly in front of my father and quietly said, "she died of cancer."

    i'll never know if that was true because up to that point, there was no real diagnosis, but it put a label other than slow suicide on my grandmother's death for my grandfather.

    the sad thing is, 7 years after that, my father was diagnosed with terminal brain cancer. his doctor said it had been there for years, insidiously growing, very slow, altering his behavior. i asked a lot of questions about "years growing" and my father's behavior. it seems it was possible he wasn't disappointed in me by himself. he had a buddy that was holding a gun to his head. literally.

    i pray that whatever you decide to do brings you peace. your journey with cancer has brought up a lot of emotions i had long buried and never addressed with my own parents' cancers, and all the deaths in between theirs. i was very young, 20 and 28. before i was 30 everyone was gone.

    while i was pregnant with my first baby, i had read a book that presented the Continuum Concept for babies and families. it is a concept based on the idea that all things have evolved to expect certain things. for example, parts of the earth hibernate fully expecting spring to come. there are tribes that hold their elders in the highest regard because of their wisdom and experience. babies have souls that should be allowed to expect respect for the gift of their birth and be allowed to expect certain care and treatment or their thoughts, their souls experience an interruption of their continuum.

    the book closed with a small chapter on dealing with death within the "tribe," however small that tribe is. it said that everyone experiences loss vastly differently because each of us has a soul that has its own continuum. the tribe always allows the ones closest to the death to experience it on their own continuum and are given the respect their grief deserves. in turn, their giving of themselves by their understanding will be returned when they are forced to face their own personal loss when the time comes.

    i know it sounds, Lord, i have no idea how this will all read out to you but i liked this idea of respect and allowing everyone to live the life they have with their own soul. i believe you should do exactly what you need to do to take it one step, one day, one minute at a time to get to your point of healing. helping your mother-in-law is a wonderful thing. you are a blessing to her.

    i'm going to abruptly stop talking now since it seems i am in a needy mood today and am now just hanging around to hang around so i'm not alone. i hope you have a good, quiet day doing what you want to do and maybe going outside to breathe in deeply of the beautiful fresh air.

  2. Dan, I don't have any experience with what you've written about as Austin died suddenly of a heart attack. But I do know that this month (of which today is the last day, thank God), is Heart and Stroke month, where the TV is full of commercials wanting to raise money to help fight heart attacks and strokes and it seems that the mail box is full of literature on this same fundraiser. I've had a really hard time with this, and I'm sure the commercials and literature haven't been quite as prevalent in reality as they have in my mind.

    I feel like I should be doing some big fundraiser (there is no walk for heart and stroke month, at least that I'm aware of) to help raise money to fight the damn thing that killed my husband, that could very probably affect me, or my children, or other friends and families who I care deeply about. It's the number one killer of people in Canada. But this year I just want to avoid it. It's too painful to talk about, to watch commercials about or to read about in my junk mail, so I can't imagine fundraising for it and having to talk about why I'm raising money. I am fairly sure that in the future, and maybe even as soon as next year, I will actively get involved in raising money for heart and stroke, 'cause I want to help save others from going through what we are having to deal with. But this year, I'm just focusing on Austin, missing him, loving him and learning how to live without him. Next year, when I'm feeling stronger (maybe), I'll focus on battling the disease and the rest of the world. I have given a private donation, as have family members, but that's it for me this year. And in my gut, that feels right for me. I encourage you to go with your gut. What decision, the end of the day, will give you peace?

    Love Deb

  3. I very much liked the observation you made about the real supporters and fighters at the front lines are those who have had experience with loss, along with the newly bereaved. But at the same time I can sense the deep hesitation you feel for attending this fund raising event right now. You're already doing a great deal to "give back" to the bereaved community with your blog and you have participated in other supportive activities in the past. As I see it, you sure can pass on this event, even if you are unable to really understand why. Sometimes, it isn't until an event has passed that the clarity sets in. Be kind and gentle to yourself and whatever you end up doing will be right. Your not attending won't cancel the event and there is always next year to plan for.

  4. Thank you all for weighing in on this topic. After reading all the comments I have pretty much decided that I will sit this one out. Then last night my daughter came down to my room to say that she would be happy to join me on the Walk if I decided to do it.

    Now I'm not sure again. I think I will let it sit for a few more days.


  5. Hi Dan,

    It's a difficult decision, for sure. I struggle with some of this because I want people in our situation to be supported, and brain tumour research gets so little funding because it's still considered one of the more 'rare' forms, and as you know, the more serious types like GBM kill so fast they don't have much time to figure anything out. At the same time, I wonder how much of the money goes to where it is really needed.

    Long ago we purchased a number of items from the BTAC as fundraisers. Included in this, was a beautiful crystal bracelet I wore religiously. Not long before Elias died, it broke. I was so happy when his cousin fixed it for me as I felt like it would be 'lucky'. He died days later. I still wore it faithfully every day. But a few months back the ribbon charm on it was lost, and just the other day it broke again. I haven't yet decided what to do about it. In many ways I love it, and it reminds me of him when light hits it and send rainbows everywhere, but at the same time it's hard.

    I also just replaced my BTA pin on my coat with a beautiful dragonfly pin (thanks Deb!). I don't want to seem like I'm turning my back on the BTA because I'm sure they do great things, but for some reason right now I feel like I need distance. Perhaps I feel bitterness. I'm not sure. But I am rambling . . .

    Anyhow, I'm sure the decision you make will be the best one for you. You seem to have an incredible ability to honour your true feelings, so I can't imagine this would be any different. I find I make a number of 'game day' or last minute decisions these days . . .