Craigside Chat: In his own words

Craig awoke today with a renewed desire to journal. He asked for his blue notebook but quickly found it difficult to write with his increasingly poor eyesight and diminished coordination.

We told him he could dictate to us and we'd be his scribes. For an hour, over natural dialogue prompted by Craig, we captured word for word some of the "more fascinating changes over the course of this disease" including pet peeves like "getting used to the Depends, small handwriting, and worsening eyesight from the disease".

Sometimes his voice would fade to a whisper. These are his words, nonetheless...

C=Craig; J=Jill; D=Diane; E=Erin

C: Here's one incomplete thought that struck me today. It's hard to write about last days when you don't know how many of them you have. And, it's difficult to write about that especially when you don't know who you are writing to. Are you writing to yourself? I can write to myself now, but how long is myself gonna be around to read it, appreciate it, and discuss it. I guess I'm not writing just to myself, but to others, and by that I mean other audiences both far and wide. Those audiences include immediate family, friends, local friends, distant friends (location), and then there are those people who know me only through the blog. And, then there are all the other contacts and people who've passed my way. So, I guess that's who I write to.

J: Does it give you comfort knowing you are writing to so many?

C: Yeah, that's what gives me pause. To think that so many would be interested in something like that.

D: You'd be surprised, Craig

J: You have quite the following.

D: ...Because this experience has been so honest, so real.

J: You're my inspiration; you've taught me a lot in the last few months

E: Mom too

D: We've all taught each other a lot

C: That's kinda how you have to see yourself in this, as a teacher in a way. That's how I see myself as I go forward with this; I try to remember to be an exemplar.. use that word, that's a "fancy" word...(Craig spelled it out to me as if I didn't know.).

D: Are you scared at all?

C: Scared? Yeah, because the loss of energy and weakness comes kind of quickly and it's hard to deal with it because I'm already so weak.

D: I mean are you scared of passing on?

C: (thoughtful pause). Yeah. I'm scared of passing on. Yep, I'm scared of passing on. It's hard for me to think about that.

J: Well you won't be alone. We'll be right here.

C: When the time comes, I'm gonna start eating some food.

J:  Like something of a last rights?

C: Yeah, exactly.

E: What would you like so that we can have it available?

C: Well, if you have some ice cream...some sorbet would be nice right now.

E: Live your days well, right?

(some discussion whether the sorbet will bring back his thrush...Craig cancelled sorbet order for fear of exacerbating the thrush.)

C: Ice water is always good. Some cold ice water would be nice.

D: So much of this is about keeping your sense of control and comfort. What would you want your passing to be like: do you want a lot of people around? Do you want to be alone? What would be the best so that you're controlling it, and it's the best thing for you.

C: I like having people around.

J: Do you feel like these are your last days?

C: Well, no but you never know. The "shit day" was absolutely shitty, literally. It was exhausting. Going to the commode all the time... and then, while I was on the commode, I was having shakes. I don't know what happened, but no position was comfortable. Then, something snapped and I was asleep for several hours. And there was another nurse; I don't remember anything about that now.

E: We called her because we were worried about dehydration and other symptoms that were new to us.

C: Going back to our previous discussion---the power of writing to reach audiences far and wide, there are going to be people, friends, kindred spirits I'll meet solely through writing. I've never seen them before; I'll never get to meet them. They'll never get to meet me except through this blog. It's quite outstanding.

(Craig visibly thinking)

J:  Are you happy we have this blog as an outlet?

C:  Yes, it helps.

C: Here's another entry: one of the things I notice as I move forward are the hallucinations. I call them hallucinations in that I see thngs when I'm awake; I know they're fake. I know they aren't real, but I still see them. I see images in grains of wood on the door; images in the ceiling, in the speckled paint; in the wall paint.  I see shapes and objects in the room that I can't see or make out because of my poor eyesight. Because of my poor eyesight, I can't see shapes as easily so they blur together to form new shapes. The other day, I swear, in the darkness and shadows of the tv and monitor, I saw all kinds of things. It was like an entire TV show I was watching. It's like a horror show (probably the Tyra Banks show, Jill and I offered as an aside).

E: What images do you see?

C: Ohhh, random Hollywood celebrities but mostly random images like sprites, devils, witches, goblins, machines, transformers, aliens...

J: Sounds pretty scary

C: I suppose it could be scary, but not so scary really. The scary part is when they move from inanimate hallucinations, where I see them as still life, to moving hallucinations. In other words, I'll start to see these things move in the grains of the wood and that's when it becomes spookier. They swarm like mobs protesting. Aliens coming in there. Chase scenes. Creepy crawlies coming after you. So that can be kinda disturbing and that's why I like to have people around sometimes, so that I can space out staring at them and not at these other things.

J: Is it ok when we hold your hand?

C: It gives me distraction. Generally, it's good when people hold my hand.

C: Right now, I just had a hallucination that Abby or Herbie was caught up in wires in the back of my closet. It's over now. I don't know if this is part of the natural process to have these visions, but it's part of my process.

J: Did you like the music and poetry last night?

C: Yesterday was very nice to wake up to that (to the music and poetry). Good combination, the harp music was really good. (said emphatically)

C: It's the damndest thing. Here's an extension of the prior thought, the little things that you lose can piss you off -- like my eyesight, my handwriting, it's really limited something I love to do, which is to write. The handwriting -- my coordination is really off, so I write really small now and it's hard for me to write much bigger and in a non sloppy way.

J: You've held so many journals, so many thoughts from years before this, it'd be interesting to look back.

C: You'd be surprised that I have notebooks stretching back to high school. That's something I'll have to show you sometime.  There all here in the apartment, in the closet.

D:  Is this something you would like us to read once you're gone?

C:  Yes, once I'm gone.

C: (Adding to his previous statement about the little things you lose) Which is why you have to let go and allow help from others.

E: Is there any one thing that has been more difficult to let go than the others?

C: As things have come by, I realize that I have to let go and so I do. For example, the depends. I say, you know what, you're gonna see my bits and pieces now and you're just gonna have to deal with it.

J: (laughing) I think it's more of an issue for you than it is for us.  We're not bothered, at all.

C: You'll see every part of my anatomy now, so might as well give it all up. And, wiping me....Realizing I could no longer wipe myself was a hard discovery.

J: Did you ever think your three little sisters would be here through it all, be here living with you?

C: No, I would never have expected that. I never expected to have cancer.

J: I hope you know that you'll live on in the memories we've captured during these last several months and all the months before. The memories will be with us; our time spent here will help us get through the difficult times ahead.

E: Do you have pleasant, recurring visions or memories?

C: Several, many from our travels together. Ko Phi Phi, Laos. One of the things that sticks out in my mind now is our trip to Luang Prabang -- the night Jill and I walked into a wake for an elderly woman who had passed away recently. We were invited in off the streets by these people. They were playing music, passing food and drinks around. That's how they celebrate the passing of the dead in their culture. With music, drink and food all through the night and everyone's welcome. That instilled in me a sense of generosity, that when you go, it can be a generous act. When I go it can be a generous act. I can bring people together at least for a brief period of time, to reflect on their lives, and enjoy themselves. That's I guess what I want my memorial service to be like. A celebration of them. A celebration of our time together - friends and family.  Not just an egocentric celebration.

C: Another memory: the musicians in Bali this past summer inviting me into their home. The Gamelan garage band. Those guys invited me in with a sense of generosity and hospitality, and that's how I think this leaving process should be. There should be a sense of hospitality and welcomeness. Life is a kind of dwelling.

J: Do you feel yourself drawing on Seneca and the stoics?

C: I do. You have to think about the things you can control and the things you cannot control, and, as much as possible, be clear about what those are. Those things that you can't control, you have to let those go. Those things you still can control, this is the time where you have to start letting go. Like the bathroom responsibilities -- even though I can control it up to a point, I have to let that go. The things I can't control, I just cancel it, you have to ignore it and let it happen. The bathroom situation is a perfect example where it used to be that I had more control and now I have less control and there's an aspect of giving that up.

J: Are there other memories that help guide you, or readings/teachings?

C: All the Roman stoics. Epictetus "the handbook". Viktor Frankl. Based on the readings of Epictetus, Seneca, and others he came up with a general psychology of how to live through concentration camps. What's the meaning of life, because you control nothing, no control of food, no access to things you love, can't see your loved ones...so how are you going to get through it?

J: Is there a reason you are particularly drawn to stoicism?

C: It just fascinates me; it has since my undergrad years.

D: What's the "philosophy of Craig" in a nutshell?

C: It's a life philosophy. It's grounded here in the everyday word. A philosophy of care of self -- how you take care of yourself, how you present yourself, and engage with others.  It's about willing yourself to others in the here and now rather than some after life. It deals with how you deal with sickness, how you deal with pain and suffering, how you deal with relationships, how you deal with love and failed attempts at love.

J: How do you?

C: It's a struggle isn't it? I'm saying this is a philosophy of Craig, I'm not saying there are answers to it. It's a field where my thoughts congregate.

J: Is there anything you would want to say to dad? Do you want to spend more time with dad?

C: Yeah.

E: You seem, like the rest of us, someone who lives a life without regret, but are there any regrets you have?

C: Yeah, I have regrets. I don't think of them much these days, not as often as I did before cancer.  That's the weird thing, I don't think of my regrets. I used to think of them much more before this, before I got terminal...(trailed off)

J: What are some of the regrets?

C: I regret turning to law when I should have pursued teaching.  Maybe I would have been better as a professor than a lawyer. As a lawyer, I've been struggling getting into more of the teaching aspects. Lost love is something to come to terms with. You have to grieve, like losing a loved one, you have to grieve loss almost as if that person had died or were dead. The fact that I'm not a philosophy professor, you have to grieve that.

J: You would have been an excellent teacher.  You have a beautiful way of speaking. 

D:  The students would have loved listening to you.

J:  I like your philosophy of Craig.

C: Well, part of it has been drawn up over the years and influenced by other people. Grandpa Tinse, for instance, he had the mindset of I come, I'm here awhile, I spend time with people and do a few things and then I'm gone. He viewed most of life as dictated by chance rather than choice.  For me, one of the great questions is how much is choice and how much is chance? Most of what happens to us is chance, but when we have the choice, what do we do?  How do we frame the choices. When you have choices, how do you handle the chance?

D: How do you feel that we've influenced your philosophy, if at all?

C: I can give up certain things now because I know you guys will take care of them for me. I can give up my hygiene.

D: But, I mean in the broader sense.

C: Talking to you guys is how I flush out a lot of these ideas.

J:  We're your soundboard?

C: Yeah.

D: (pausing to pull Craig's shirt out of his pants) Uh, tucking your shirt into the depends is unacceptable. ;0)

J:  That reminds me of Mom

(We laughed and began putting him to bed.)

D:  What we do is we ground you, Craig. That has been our job.

C: Yeah. (Jill noted a time back in junior high when he brought out his yellow steno pad to take notes on the "female issues".  We laughed over some of the cruder tips/insights that we offered at the time -- when we were not yet teenagers.)

D: You have to admit that we have influenced your philosophy of thinking.

C: Yes, you created the fodder for it (said with a twinkle in his eyes.)

E: Oh, yeah, we know. After we'd nail our one-liners and zingers, we'd watch you write them down in order to tell them to your friends...You used our material as your own. We know what's what.

(He smiles, and slowly drifts off to sleep.)

We'll continue to capture his blog entries through these conversations.

Until the next Craigside chat...

~ E, J and D