Life as an Extreme Sport

Giving Voice

I have a friend, suffering from complications of pre-cancerous cysts and other issues with her breasts. She’s going to be considered high risk for the rest of her life; right now, she’s dealing with a lot of side effects from recent surgeries to remove masses and reconstruct (mostly via reduction) her remaining breast tissue.

This friend is in my department. There are basically four active female graduate students in our department, and then a plethora of men (murder of men? congregation? flock?). She’s taken the stand that explaining why she’s holding a pillow against her chest, or why her clothes seem baggy suddenly, or she’s taking medication, late for classes, looking unwell, or simply talking about how she’s feeling (physically or otherwise) is not only fine, it’s necessary to do so to remove the stigma and shame associated with a breast disease. As she points out, if she had toenail surgery a week ago, everyone would be concerned and no one would react with discomfort or awkwardness. But social sexualization of breasts seems to carry over, and people – or at least many men that I’ve watched her deal with lately – are very uncomfortable with her illness, both in that it’s an illness, but also that it is about breasts. Because everything around a breast must be sexual, of course.

So her stand is to talk about it like it’s any other illness that we would talk about. She doesn’t want pity, but she refuses to be quiet because it makes people uncomfortable.

I admire this, and it’s an attitude I’d already begun to embrace with my mother. Like I told my former department director, when people I haven’t talked to in a while see or chat with me, they want to know how much I love graduate school, how my plans of taking over the world are going – they don’t want, and certainly aren’t expecting, the news that my mother has stage four lung cancer. And after you drop the c-bomb on people, it’s hard for them to recover. People don’t know what to say, are afraid to say the wrong thing, and you have changed in their eyes. A ticking time bomb of utoh and pain.

It’s an awkward situation to be in, though, because you don’t want pity or to be treated differently. Yet at the same time, I at least don’t want to feel like I have to hide things. So in many ways, I’ve adopted a strategy that isn’t walking up to someone and saying, as introduction, “hello my mom has cancer how are you”, but one that allows it to be revealed as a normal part of the conversation. If we’re talking about cats, I’m probably going to mention missing mine. If you ask why they’re missing, I’ll explain they’re in Oregon, and I’ll explain why.

I guess, what my ambien-addled fingers are trying to get out (and this will be ever-so-much fun to read in the sober light of morning), is that too many people in my friend’s position, or my own, react to the stigma of illness by hiding it. She and I have both refused to do that, for our own independently reached reasons – reasons that seem to come down to this:

There is no shame in being sick, and the only way we’re going to remove the stigmas around certain areas of the body, or certain kinds of disease, or even death itself, is to talk to one another about it with frankness, honesty, and compassion.

Radio Silence

Although I have been posting here nearly once a day, if you actually look at the content of the posts, I haven’t said anything of personal substance for a week, and a week is a long time when cancer is an unwelcome guest at your table. So why the radio silence?

I suppose I’ve just felt a bit mute since returning to Albany. It’s not just this blog, or the other blogs I write for (where I’ve also been silent); I’ve ceased responding to most email, creating a large backlog, I’ve largely stopped writing for fun or classes, and have even been quite a bit quieter on the various instant messaging services. I’m just at a bit of a loss for what to say.

Writing, a certain kind of writing anyhow (the narrative kind?), requires, for me, a connection to how I’m feeling. Not a knowing of how I’m feeling, but an actual experiencing of that feeling. And for better or worse (alright, definitely worse), I’ve been kind of numb lately. I know what’s going on, but I just don’t have a way to access it, to feel it. It’s like all those emotions are inside a snowglobe, and I can turn it upside down and shake it and watch the glitter swirl, but I can’t get inside it.

My heart as a snowglobe – it’s an evocative image, one that I should feel something towards, and I simply don’t. I just don’t feel.

I know some of it is simply exhaustion. I hit the ground running when I returned from Albany, rather literally; I ran into a colleague at the airport, picking up a job candidate who was on the same flight from O’Hare. We all ended up talking for over an hour, while we waited for confirmation that our bags were off traveling without us. The next day, interviews, Tuesday – I literally slept all day, jet lag traveling a bit slow. Then class, more interviews, working on an indexing project, more interviews (we’re hiring three new faculty, which means an insane interview schedule for the next couple of weeks). I’m not getting a lot of sleep, and not having much real downtime that isn’t me trying to sleep, or falling asleep at inopportune times.

On top of that, I guess it’s been the month for commentary on the blog. I’ve probably received more feedback in these first few days of 2007 than I have in the last few years. And of course it’s been all over the place. Some friends love that they can follow all aspects of my life here, from school to personal to family and so on. Colleagues have written in to tell me they enjoy reading about themselves, or seeing how I’m doing, or just the breadth and depth of what I opt to write about (thank you, and I will write back). Some friends have stopped talking to me over the content – guess not so much with the friends. And then there are the people who question what I write about, if I’m too open, or writing about things best left private, or if I’m using the blog as a form of therapy, and all the suggestions of how I could improve it if I just changed this one thing (that thing varying, of course, from person to person), and then the folks who’re astonished anyone would suggest I change a thing.

So instead of being paralyzed by the knowledge of People Who Matter reading (even if just occasionally), I now seem to have some sort of paralysis-based-on-rampant-public-opinion. Not that I’m going to change how I do things – I don’t want to be like other blogs, or change a thing; I write what and how I want to write. But of course, now I’m aware of the various lenses people are viewing this through, and what their critique is, and I have their voices in the back of my head when I sit down to write anything. (Frankly, I’d rather put you all in a room and have you duke it out, rather than have you doing it in my head. Unfortunately, I sort of suspect that putting everyone into some sort of American Gladiator deathmatch would be bloody, and deprive the world of some academics that it probably needs.)

And I guess the last bit of it is just – what am I supposed to say? I feel horribly guilty that I’m enjoying my time back in Albany, that I am having fun spending so much time with like-minded people, and I’m enjoying seeing people realize that I actually am smart and I know my subject area much, much better than most people here have given me credit for. I should be in Oregon, not here, not enjoying myself, not having fun, not being cut off from the day to day life and process with Mom. I should have been there Thursday to swallow my fear of needles and learn how to give her shots that will boost her production of white blood cells, instead of sitting in a classroom taking on 20 people who don’t think we have any single, agreed upon comprehensive moral doctrine, tilting at windmills just to tilt at them. I shouldn’t have had to have my father call me with the results of the CT scan, or describe the found tumor over the phone, or hear about the restaging in 6 weeks, and my parents not wanting to know what stage she’s at. I should have been there, asking my own questions to the oncologist, bringing my own concerns and fears and support to the table. I should have been there to argue when the nurses kicked my family out of the room Mom was receiving chemo, limiting them to 15 minute visits once an hour.

I should have been there, and I’m not, and I can’t be, and I don’t know how many times or ways to say it.

And so I retreat. I retreat and I stop talking, because the last thing I want to do when people are already commenting left and right on the style and tone and quality of this blog is to be monotonous and repetitive. Silence on my part is a good way to insure silence on the part of others.

Oroborus Feeding Itself

Mom has had a rough couple of days. By extension, I have had a rough couple of days (and I expect the same could be said for my father). She had a CT scan yesterday, in order to restage the progression of the cancer, but she won’t receive the results for a week. They had a hard time getting the IV started, the barium milkshakes were nasty, and perhaps worst of all, she hadn’t remembered that they were doing a full body scan. She thought, due to the milkshakes, she was just getting a chest/abdomen scan – and instead she has a technician telling her no, they’re scanning her brain to check for tumors. Surprise.

Yesterday evening, several handmade cards and small angel-themed gifts from some of my younger cousins were delivered, courtesy our braving sleet and snow mailman. I don’t remember why, but Mom didn’t get around to opening them until late in the day, and she made the decision to call the relatives to thank them for the very sweet cards while I was watching The O’Reilly Factor. The next thing I know, she’s leaving a message on the answering machine and crying and hanging up, and I’m sitting on the edge of the armchair with my arms around her as she cries and Bill O’Reilly rants in the background.

I kept telling her it was okay, she can be upset, she’s been so strong, that I’m so so sorry I’m leaving, and she kept telling me she’s not strong, we just never see her cry, she wishes I didn’t have to go.

We never see anyone cry. We all do our crying alone, in the bathroom, out on walks, in the snow.

Then when Mom does cry (even our language for crying is awful – breaks down? Breaks down? Like there’s something wrong and dysfunctional about crying when you have cancer?), she feels guilty and upset and then I feel the same, not because she’s crying but because through my crying alone, with my cats, at night into the pillow, I’ve contributed to an environment where she feels she has to hide herself and excuse her tears.

I don’t know how to walk the balance, to make a space safe for her, but one that doesn’t wallow in her illness. And it doesn’t matter, because in less than 48 hours, I’ll be on the opposite side of the country from her and unable to do anything, anyhow.

Except worry. And cry alone, without my cats, at night into the pillow.

grounded silence

Toledo, my large, grey and cream dogcat (so dubbed by my father, who is not yet convinced Toledo is actually a cat, but instead suspects he’s a dog in cat clothing), has, as one of his many personality quirks, a particular habit of helping me make the bed. Quite specifically, no matter where he is in the house, if he hears me starting to make the bed (shake out the sheets and the like), he’ll suddenly be there, in the middle of the bed.

A very large, static lump of cat, insisting he be made up into the bed itself. He seems to prefer being caught under the fitted sheet, but if he doesn’t get there in time for that, he’s satisfied just being buried by sheets and blankets. And then he’ll stay there, rumbling and purring, happy as a dogcat can be.

I was thinking about this as I laughed at him while I made my bed tonight. On this small twin bed that we’ve all been sleeping on (me, my two cats, and this last night, my sister’s cat), it’s rather hard for Toledo to stretch out next to my feet (let alone Lunar and Molly sleep at my shoulder). It’s crowded, and often gets very warm – the cats generating as much body heat as I do – but it’s worth their affection and love.

Smiling, fond amusement, thinking…thinking that in a few days this won’t be an issue any more. In a few days, they’ll have the bed to themselves as I, I journey back to Albany. As I go home, leaving not only my human family behind, but my animal family, as well.

It was a hard decision to make, leaving. I wouldn’t, if it were my choice. But the cold hard reality is, as someone with a chronic pain condition, I cannot be without insurance. And if I didn’t return to Albany, and school, I would lose my health insurance. My sister accidentally slipped this to my parents back in December, and Mom has been stressed out about it since. She doesn’t want her illness to harm any of us, and she thinks that losing my insurance would be, well, bad. And she’s probably right – I’m not a pretty sight to be around when I don’t have my pain medicine.

On top of that, she very much doesn’t want me to put my life on hold. She doesn’t want me to go through another first year hell, next year. She wants me to keep on with my education, and all the other fun and interesting things that have been happening for me – and it’s not just me. She makes Dad go out to do his consulting work, my sister is back east for a meeting she needed to attend, my brother continues his job. And I see her point, I really do. If we all dropped everything to be here and hover, day in and out, it would be like we’d all collectively drawn our breaths and were holding it, waiting anxiously for her to either get well, or die. Talk about an unhappy pressure!

I’ll be returning to Oregon every couple of weeks, so it’s not like I’ll be completely out of the loop. SUNY has the most amazingly bizarre semester schedule, which combined with my one day a week classes, will allow me to spend half my time in Oregon (flying back and forth every couple of weeks). For this reason, the cats will stay here for a while… so that I don’t have to fly them back and forth (and deal with both the headache and incredible expense), and they don’t have to be alone for long stretches. Besides, they’re good as therapy animals – both Lunar and Toledo are exceedingly lovable monsters, and all of the animals around make Mom smile.

Making Mom smile is a good thing.

That’s not just a story I tell myself, either. I do genuinely believe in the benefits of having companion animals, and it’s pretty clear, in both how she acts and what she says, that the cats are making her very happy. But belief doesn’t cushion the cold hard fact that, come Sunday evening, I will be alone.

I don’t think I’ve ever been truly alone. All my life, I’ve either had pets, siblings, or a husband – I’ve never had none of the above in my life, and my house, at the same time. If not a human, there has always been an animal around to take comfort and joy in, to hug, talk to, curl up with a good book and tea. I’ve always had my animals to offer their unconditional love and grounding; if nothing else, having them around makes certain I actually speak to another living thing in the many long days between classes.

But come Sunday, my apartment will be silent, and that is something I’m so afraid that not just my apartment, but my life, will be.

fading in to flat

I’m tired.

I feel like I have to preface anything I say with that. I’ve shifted back to what some of my friends refer to as “Kelly Standard Time”; my own, insomnia driven “sleep” (I use the word ever so lightly) schedule. Drugs can sort of make me sleep, but not really, anymore.

And so I’m tired. The tiredness feeds in to all sorts of negative things, and this Friday night, as I get ready to chemically fall asleep before midnight, I find that I feel hollow. A shell with strings, going through the motions. A single ship in the sea, a solitary star in the sky…how many phrases can I come up with to creatively say I feel forgotten by friends and colleagues, that I feel alone? Probably quite a few, and it’s illogical – I know it’s illogical!

Feelings aren’t terribly logical, are they? I would have made an awful Vulcan.

I’m tired.