Walking Dead

November 29, 2011 at 1:59 pm (Uncategorized)

I am dead on my feet today.

I got plenty of sleep last night, but Jay is out of town for work this week. This means I am solo parenting. Hence my deadness.

It’s a sad commentary on how fragile my equilibrium is that getting up early to get my child ready for school this morning—along with having all the responsibility for him last night—sucked all the energy out of me.

When Jay is out of town I always intend to use the time to do some top-notch bonding with Andrew. Instead, I survive. My visions of special home-cooked meals quickly become Dominoes for dinner and Pop-Tarts for breakfast. (At least I heated them in the toaster first). All those mother-son walks, joint drawing projects, and extra reading time – well, the boy enjoys the extra screen time he usually ends up getting.

I’ve got two more days before Jay returns, and already I feel like I my grasp on functionality is slipping. Luckily, tonight Andrew has a sleep-over at kind friends who always help us out by hosting our boy when Jay has to be away for work. If I can just hang on from school pick up until I get to hand him off at 5pm, I can collapse into bed and sleep until Wednesday. Then I’ve just got Wednesday after school and evening to survive on my own with Drew.

As much as I hate feeling so tired, my capacity to muddle through these days is also a tribute to how much better I’m doing. All the willpower and junk food meals in the world couldn’t have gotten me through these trips a couple of years ago. Then I needed my parents to come and stay with me and take care of Andrew while Jay was away.

It’s fun to off-load your kid on your parents—sometimes. Eventually, though, not having responsibility loses its allure. It’s true I could get more rest when my parents came to rescue me. Yet, Andrew was also developing a sense of his mother as a not fully competent adult. He thought I couldn’t be left alone with him. And that made me feel sad and helpless.

So I’ll take my bleary eyes and fog-filled brain over feeling pathetic and helpless. It’s almost a source of pride for me that I can grit through these days.

And now, if you’ll excuse me, I need a nap.

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Hereditary Taint

November 28, 2011 at 6:58 pm (Uncategorized)

There is nothing quite so unappealing as discovering in your beloved only child an unlikable aspect of his personality—that he clearly inherited from you.

I can deal with Andrew being as stubborn as me and as argumentative as Jay. This weekend, however, confirmed my worst suspicion. Andrew is a procrastinator.

Those of you who know me in real life already understand that I am a world-class task putter-offer. I start with the best intentions, whether it’s turning in an article on time or hosting a dinner party. I always think I’m going to manage my time, plan ahead, and get everything done without the stress and strain of doing it all at the last minute.

There’s a saying about where good intentions lead. And there’s no doubt that my procrastination has brought me close to hell on earth—like when I wrote a 300-odd page reference book (and did all the research for it) in 17 days, or when I made 14 gourmet desserts for a huge Christmas party in a day, or when I packed up our Montana house to move overseas in three very long days and nights.

My procrastination is just as unpleasant for other people involved in my tardiness. My mother would get my high school term papers to type up in the dark hours of the night—the day before it was due. My editors surely know that when I email them around the time a project is due, my document will not be attached. Dinner guests expect a mad scramble (and some potentially undercooked poultry) when I invite them.

But now I’m getting a small taste of what it’s like to be in the support team of a procrastinator. For the past week, for instance, I’ve been trying to get Andrew to finish a very boring homework packet for his reading group. He was supposed to turn it in before Thanksgiving, but “accidently” left it at school twice. So we emailed his teacher (twice), using the same groveling tone I’ve perfected with my editors, asking for a little more time to complete the word scrambles and fill-in-the-blank worksheets on Ellen Tebets. At least I made Andrew do the typing. He finally brought the thick packet home on Tuesday. He had a long holiday weekend to get it done. Jay and I reminded him on Wednesday, Thursday, and Friday—several times each day—to start. “Oh, right,” he said each time. “I will, I just need to…” finish this chapter in my much more interesting Harry Potter book/play another game on Lego.com/clip my toenails/do anything but this dreadfully tedious make-work. And then Jay and I would forget about it.

Finally, on Saturday, we made him sit down with the worksheets. He cycled through the following statements for about an hour: “Why can’t I start this tomorrow?” “This is boring.” “I hate this.” “This isn’t fair.” “I promise I’ll start it tomorrow.” “Please, please, please.” When he did stop complaining for a few minutes, he’d quickly throw down his pencil and moan, “I can’t do this. It’s too hard.” (To get a real sense of our experience, say that last sentence as slowly as you can. Draw out each word to last about ten seconds.) Jay and I said, “Pick up your pencil.” “Yes you can!” “It will feel good to get this done.” “Doing your work is important.” We sat with him and encouraged him. We helped when help was appropriate, and just held the line when it wasn’t. Those idiotic worksheets ended up cannibalizing the rest of our weekend. When he had finally finished, I said, “Andrew, you’ve got about 16 more years of homework ahead of you. We’re going to need to find an easier way to get your work done.” Inside I thought, “I am not going to be able to afford all the wine it will take to get me through 16 years of this.”

When the dust had settled—and the pencils weren’t being flung or bedrooms doors being slammed—I tried to have an honest talk with my boy about the dark side of procrastination. I told him how much harder I made my life by putting off things. I explained how many weekends I had lost to not working. As he knew from the reading packet ordeal, it can take a lot of effort and energy to not do your work. He said that I made sense, that he would try and do a better job with the next reading packet. He smiled and hugged me.

I doubt any of my words of wisdom will stick. I never listened to similar speeches from my mom, my dad, my husband, my editors, my friends. I had to learn it on my own. And this process wasn’t pretty. But eventually, I had to stop procrastinating. I’d like to tell you that it was all those combined words of wisdom crashing through my denial that led me to mend my ways. It wasn’t, though. It took getting sick and getting a kid to change my habits. I tried—more times than I’d like to admit—to keep procrastinating after I moved to Chronic Town. I’d put off writing an article until the day before it was due. I tried to work my old magic. Fueled by adrenaline, neuroticism, and caffeine, I’d force myself to stay up finishing the article. And I’d have to go to bed an hour later anyway because my health wouldn’t respond to stimulants or personality quirks. If I tried to grind through, I’d make myself literally sick the next day.

It took a couple of years of screwing up badly because of my procrastination to learn to just stop it. I am proud to say that I turned in my last High Country News article (yet to be printed) two days before my deadline. I got major kudos from my editor, I felt good about myself, and I hadn’t made myself sicker my inflicting a crazy schedule on myself.

A big part of parenting is wanting to help your kids not make the same mistakes you made. An equally big part of parenting is recognizing that sometimes you can’t. It hurt to watch Andrew suffer because of procrastination. But I couldn’t stop it.

Of course, I’m not giving up on him and consigning him to a life of missed opportunities and too little sleep. I’ll keep working with him on time management and the satisfaction that comes with knowing you’ve accomplished a job on time. I’ve got it all planned out. I’m starting early on this project.

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The Keeping of Traditions

November 23, 2011 at 11:09 am (Uncategorized)

Today I am getting my monthly dose of Rituxan—the chemotherapy agent that helps to manage my systemic sarcoidosis.

Tomorrow is Thanksgiving.

Houston, we may have a problem.

Rituxan is getting harder and harder for me to tolerate. Each month I need more Benadryl to subdue my allergic reactions against this foreign protein. Each month, the infusion leaves me more tired, more nauseous, and bedbound for longer and longer with flu-like symptoms.

Cooking turkeys, whipping cream for pies, and feeling anything resembling thankful is not what I expect to be feeling like doing the day after Rituxan.

Imagine my delight, then, when friends invited us to their Thanksgiving celebration. I can rest and then just show up for their meal on Thursday. I am thankful.

But our friends are not big turkey fans. They are cooking an elaborate meal, but one that does not include the staples that characterize a “proper” Thanksgiving meal in the United States.

I think this is pretty cool. I’ve eaten turkey, stuffing, potatoes, sweet potatoes, some token green vegetable and pumpkin pie (not necessarily in that order) for almost every one of my 40 years. Even when we lived in Palau—a tropical island nation in the Pacific—we’d rustle up the makings of a conventional Thanksgiving meal on or around the day. So, the idea of having Chilean sea bass or some other groovy, non-Thanksgiving food appealed to me. Sometimes it’s just as fun to break a tradition as it is to follow one.

Andrew, however, was fit to be tied when he overheard Jay talking about our proposed turkey-less Thanksgiving. “What! No turkey! You can’t do that! That’s not fair. That’s not right. It’s Thanksgiving!” and on and on. And on. The boy does not lack a flare for melodrama.

We defused the situation by saying we’d talk about it later.

A couple of days later I felt strong enough to discuss this with Andrew. “Is it the turkey part you really want to keep?” I asked, hopefully. “Because we could cook a turkey and bring it over to our friends’ house.”

“It’s everything,” Andrew said. “I want to eat everything normal—at home, like we always do. It’s our tradition.

My initial inclination was to remind him that we’ve spent one Thanksgiving at his grandparents’, one at a different set of friends’ house, two at our dear friend Martha and Geoff’s, one with me lying virtually incapacitated in bed having only recently been released from a 10-day hospital stay, and only the last couple of Thanksgivings at our house. But, I reminded myself, it’s those last few that Andrew remembers.

I thought some more. Would the thought of breaking traditions feel so wickedly fun if I didn’t have such a long memory of traditional Thanksgivings? Or would it just feel like chaos? And while I was thinking, didn’t Andrew have enough variability in his life, given the chaos and uncertainty my illness brings. He can’t always count on his Mom being able to show up to his life—as he or I would like. Shouldn’t he be able to count at least on having large fowl and egg-soaked bread crumbs on a single day that year?

Jay and I talked and decided that Andrew’s request wasn’t completely unreasonable. Rather than bail on our friends (because, really, I will be in no shape to cook the day after Rituxan, no matter how pious about it I feel, and we really like them), we proposed having a family-only traditional Thanksgiving meal the next day. Since we don’t shop on “Black Friday,” and since Jay’s football watching life revolves around professional rather than college football (I made him choose one or the other when the baby was born), Friday is a pretty wide-open day. Why not spend the day basting our bird, mashing our potatoes, and appreciating one another? Andrew thought this was a great idea.

I’m a little worried—OK, a lot worried—that I won’t feel up to being around any food besides saltines, seltzer water, and pop-tarts (my standard post chemo fare) on Friday. But, as my Mom likes to say, we’ll cross that bridge when we’re over it.

In the meantime, it’s fun to watch Andrew get excited about Thanksgiving, and to see how rooted he feels right now to this community, our house, and his parents. That’s worth pushing through to make a turkey.

There will be time enough for him to break traditions. Now, we’ve got to make them—together.

How about you? What are the essential aspects of Thanksgiving for you? What is a tradition you are not willing to let go?

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You Call This a Medical Test?

November 22, 2011 at 1:50 pm (Uncategorized)

I got a mammogram yesterday. I had prepared myself for half-a day’s worth of painful stretching and boob smashing. After all the horror stories I’ve heard, I expected the test to be traumatic and deeply painful. I’m not unfamiliar with invasive or degrading medical tests, so I thought I had a sense of what I was in for.

I’m pretty sure all those mammogram horror stories didn’t come from people in Chronic Town.

The test took 15 minutes. It didn’t involve an IV or drinking half a gallon of barium. Or anesthesia (either local or general). Or very long needles. Or being hung upside down. Or flapping hand weights about with a catheter snaked from groin to heart. Or the prospect of technician-induced fatal heart arrhythmias.

Here’s what I had to do instead. First, since mammograms are part of our local hospital’s new—and I’m guessing potentially hugely lucrative— “Breast Care Center,” I got to bypass the riffraff in the main radiology waiting room when I showed up for my appointment. I wanted to dance a little jig when I wasn’t shown to one of the 7 couches where it feels like I’ve spent approximately one-third of my adult life waiting for CT scans, MRIs, X-rays, pulmonary function tests, echocardiograms, Holter monitor hook-ups, and such forth.

I managed not to crow, “See you suckers,” as I was whisked into the mammogram-only waiting room, decorated in seven shades of pink. Before my butt had even made contact with a chair, a friendly woman came out, shook my hand, and smiled at me. The whole eye-contact, smile thing caught me off guard. It’s not what I expect at our local hospital. With an even bigger smile, the technician took me to a private dressing room. I didn’t need to cram my clothes and bag into a locker the size of a shoebox. Better yet, in my private dressing room were 2 pink-wrapped chocolates—for me. I stuffed them in my mouth, quickly, in case I lost my chance to get them later.

I donned a stylish pink mini-cape, and the smiling tech walked with me to the mammogram machine. It hulked in the middle of the room, large enough to cast a shadow. I told the tech that I’ve got a defibrillator above one breast, and a port above the other. And get this, she kept smiling. She didn’t sigh over such a problem patient. She took a total of 4 images. For each of them, she plopped my breast on a screen, had me lean at interesting angles, smashed down on my breast, and told me to hold my breath for a few seconds. While the machine re-set between images, we chatted about Thanksgiving and whether it’s more fun to have a quiet family dinner or a loud, big gathering. After the four images, she asked for me to raise my arm. I did so, thinking we were moving on to the next—horrible and traumatic—portion of the mammogram. Instead, she snipped off my plastic, hospital bracelet.

“You mean, we’re done?” I asked.

I must have sounded odd because she gave me a funny look before reassuring me that yes, my mammogram was complete.

As I walked out of the hospital into the starched, frigid air of our early winter, a whole 15 minutes after I’d walked in, I felt exhilarated, lucky, and inwardly boisterous—akin to how I imagine it would feel to win a small payout from the lottery.

Let me be clear. I’m not trying to be snarky or suggest that anyone who’s had a hard time with a mammogram is a big wuss. The boob smashing wasn’t something I enjoyed. And if the tech had been rougher or poorly trained, if I had issues about medical personnel touching my body, if I had truly taken a close look at how disturbing a breast looks all mushed out on a screen (instead of just optimistically squinting past the great spread of white flesh), I wouldn’t have emerged from the hospital with a spring in my step.

I have said many times before, and I will say it again now. There is no hierarchy of pain. I really believe this. My point in bringing up all my horrific medical tests I’ve endured in the past seven years in Chronic Town isn’t to assert that I’ve had it worse, suffered more, and therefore have a license to whine and complain. (I do a good job of whining and complaining without any special victimhood status, thank you very much.)

The reason I’m writing this is because I found the almost warm and fuzzy feelings I had after my mammogram an interesting juxtaposition to the horror stories I’d heard beforehand. Would I have been so enchanted with a couple mediocre chocolate squares and several minutes spent converting my breasts to human pancakes if I hadn’t spent seven years being subjected to myriad de-humanizing and frightening procedures? Probably not. I am the product of my environment. Drop anyone into many months of getting poked, biopsied, catheterized, spun, sweated, and probed and their perspective will change. Think of it another way. The year before Andrew was born, Jay worked for the first time in private legal practice. He routinely put in 80 hour work weeks. So, when he opted for a government job next, he was pleasantly surprised to be returned to a 40-hour work week. He found it almost relaxing.

So much of who we are is perspective. The angle from which we approach a situation or the lens we use to view our life defines our reality. For me, on this unseasonably cold day, I felt like 15 minutes of mammography was manageable. I’ve been shaped and seasoned by Chronic Town. Plus, I’m a sucker for chocolate.

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What is in a Name?

November 21, 2011 at 1:05 pm (Uncategorized)

“Colter, Colter, Colter. His name is Colter.” I muttered this refrain as I drove down the hill to Andrew’s elementary school.

I was on my way to lead literature circle for the advanced second and third grade readers. It was my third week of meeting with these bright and funny kids to teach them the basics of discussing books.

Even though all of my previous teaching experience was with junior college and adult creative writing classes, I thought I was doing pretty well. Andrew had told me so. “You’re good at getting us to talk about Ralph S. Mouse,” he said at dinner the previous evening. My heart swelled. I was doing right by my kid.

“Except for one big thing,” Andrew said.

I swallowed.

“You keep calling Colter the wrong name. You called him George four times today. It’s getting really embarrassing.”

It’s true. Colter and George had both been in Andrew’s class last year.* George had graduated to the fourth and fifth grade Montessori class this year, but Colter and Andrew are still classmates. I have Colter—not George—in my literature circle. I have never taught George. Colter and George don’t even sound similar, do they? The boys looked nothing like each other. And yet, I kept calling Colter “George” during our literature circle. I knew all the other kids’ names—all 7 of them. I could call Emma “Emma” without a problem, not transposing her with Olivia or Eleanor. But I had this thing with Colter. No matter how many times he corrected me, or the other kids corrected me, I called him George.

This had to stop. What was I doing to Colter’s developing self-esteem? Would he complain to his parents about the insane teacher who insists his name his George?

I would practice. I would drill it into my brain that Colter, Colter, Colter, Colter, Colter—not George¬— was in the group. He always sat two seats to my left around the circular conference table. Colter sits two seats to my left. Colter has luminous brown eyes. Colter speaks quietly. Colter is usually on track in our discussions.

I said Colter at least 300 times on my way to school. I let the feel of the name—Colter—slide around my mouth and brain. It’s a nice name, Colter. Say it a few hundred times and you’ll appreciate it even more.

I ushered the kids from the literature circle down the hallway to the conference room where we met twice a week. I handed out their copies of Ralph S. Mouse. I made sure the “Discussion Director” for the day was ready with questions to ask the group. I reviewed my notes while the kids got to the right page. Emma asked her first question. “Why does Ralph get so angry at Ryan about running the maze?” Everyone’s hand shot up. My eyes settled on Colter. I deliberately lengthened the pause between making eye contact with him and saying his name. I will get it right. His name is Colter. I felt his name in my mouth again. Our eyes locked. I smiled. I had nailed it. “Why don’t you tell us what you think…George.”

Andrew—who never passes up an opportunity for melodrama—dropped his head onto the table with a loud thunk, and groaned, “Mooooooom.” The girls tittered. Colter smiled, but wouldn’t look up from his paper.

“I’m so sorry, Colter,” I said. “I have a hard time with names. I won’t let it happen again.”

He kept staring at his paper—steadfastly not making eye contact. With the group’s help, we picked up the shards of the discussion and plodded back into the book’s plot and themes.

Keeping names straight has never been a strength of mine, but this is ridiculous. Knowing that it wasn’t entirely my fault didn’t really help. My misnaming Colter was part of a larger pattern of memory loss, aphasia (an impairment of language ability), and overall mental fogginess that is one of the most irritating side-effects of chemotherapy. I do just fine with language if it’s written, rather than spoken. When I can take my time, correct my mistakes, and not feel pressured, I don’t have problems. Unfortunately, most communication doesn’t occur in front of a keyboard—with a handy backspace button to let me fix my mistakes. If I had been writing to Colter, I would certainly have gotten his name right.

Post-chemotherapy cognitive impairment—or “chemo brain”—affects some 30 percent of people who undergo chemotherapy. The white coats aren’t sure why chemotherapy causes foggy memory and bungled words, but there’s new evidence to back up the stories of millions of chemo survivors like me who swear that something’s gone wrong with our memories. A new study out of Stanford shows measurable differences in the brain scans of those suffering post-chemo cognitive woes.

While it’s nice to know there’s a reason for my memory gaps and mis-speaking problems (because there’s always a voice in my head telling me I’m either crazy or manufacturing problems), it’s not a solution. My tenuous hold on better health seems to depend on my monthly infusions of Rituxan, a chemotherapy agent developed to treat lymphoma. Whether the culprit is the Rituxan—or the massive doses of Cytoxan that probably haven’t yet cleared my system—I can’t say. But I’m certainly not about to quit Rituxan to test its impact on my memory.

The far-reaching effect of these hard-hitting drugs boggles my mind. I don’t think anyone understands them all. They knock out diseases, yes—and for this I am grateful. But it’s kind of creepy that after surviving nearly 2 years’ of Cytoxan, I’ve totally lost my taste for steak and my hair changed its color and texture. When I mentioned this to the doctor and asked why my once straight blonde hair was now curly and red, he said in an off-hand way, “Chemo changes your DNA.” What else has it silently and irrevocably altered within me?

I fretted over the Colter/George problem all that day. I knew that it wasn’t such a big deal. And yet, it felt deeply emblematic of how out-of-control the entire disease and treatment process can sometimes be. Not being able to call a 7-year old by the right name—especially after practicing and worrying about it—seemed more significant than the other chemo word-bungles I’d survived, like asking Andrew one time if he liked “Kenfucky Fried Chicken,” never being able to remember any of Jay’s co-workers’ names, or falling into what I had always (gently) mocked as my mom’s weird habit of being wholly unable to remember the titles of books she just read or movies she’d just seen.

I talked about it with Andrew that night. I told him that I felt horrible for calling Colter George—again. Although I usually try to shelter Andrew from my ongoing struggles with sarcoidosis and its treatment, I confessed to him that I thought the issue was chemo brain. I told him how I had problems remembering things and that even though I had practiced Colter’s name, I’d still messed it up.

“Mommy, it’s OK. You are a really good teacher. You should just tell Colter that you have chemo brain.”

I laughed.

“No, you should explain to him that it’s not about him, that it’s your brain not working.”

The clarity of children is startling sometimes. Why not tell Colter? Why drag around my embarrassment like a sack of stones?

The next time I showed up to lead literature circle, it was as if the universe had manufactured an opportunity for a one-on-one moment with Colter. All the other kids were caught up finishing a project, except for Colter, who emerged alone into the hallway.

“Hey Colter,” I said. “How are you today?”

“I’m good,” he said, to his shoes.

I kneeled down so that I could be at his level. He raised his eyes to my throat. That was progress.

“I want to apologize, Colter, for calling you George all the time. It’s not your fault. I’m taking some medicine that mixes up my memory. Sometimes the name George comes out of my mouth, even when I’m thinking of you as Colter.”

He said nothing and kept his gaze at my necklace.

“I’m going to keep working on it, Colter. I just want you to know that I feel bad because you are such a special part of the literature group. It’s just this stupid medicine…. ”

My words ran out. I sensed the approach of the other kids. I felt like I’d bungled my little speech. I wanted to cry. I certainly did not feel qualified to be teaching these kids today.

My gaze fell back on Colter. He was looking at me. His eyes were bright and kind. He smiled.

“It’s OK. I don’t mind,”

“Oh, thank you, Colter.”

“George and I are friends. I like the name George.”

The seven other kids exploded into the hallway. Colter led the way to the conference table. And for one, small moment, I was sure of myself and the pathways of my mind.

When we were all settled, I turned to Colter, who was discussion director for the day.

“OK, Colter,” I said. “Take it away.”

* I have changed all the kids’ names to protect their privacy, except for Andrew, who has the misfortune to be the child of a memoir writer and blogger.

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Momentum–Or Not

November 17, 2011 at 6:15 pm (Uncategorized)

Today I am picking myself back up after a hard week of being sick.

I lost my momentum. Psychologists say it takes 21 days to form a new habit, to get used to an exercise or diet regime or get in a working groove. I can’t remember the last time I had 21 consecutive good, healthy days in which to get in the habit of doing anything.

Before I got sick with this sinus infection that also revved up my neurosarcoidosis I was writing every day. I wasn’t being brilliant in my every word, but I was showing up to my desk and my computer every day. I didn’t have 21 days under my belt, but enough that I could feel it becoming easier with every day I spent making words. By easier, I don’t mean that I was pounding out dozens of pages. But I didn’t have to deliver quite as many stern chats—and sometimes reassuring talks—with myself to get me to my desk to start writing. For the first few days of this regular writing routine, I was grateful I’d parented a toddler because I had to engage in the same constant and annoying boundary setting with myself. But, then, miraculously, I didn’t have to tell myself “No” a thousand times. I got up, went to my office, and wrote.

Then I got a cold, which became a sinus infection, which kicked off a freak show of neurological symptoms. My writing streak ended. My habit crumbled away beneath the steady pressure of illness. It is disheartening, to say the least. It took all kind of rule-setting, limit-making, and brisk self-talk to get my ass back to the desk chair.

I have been here before—many times since arriving in Chronic Town seven years ago. If you were to graph my working life, it would look something like this:

I think the goal is to look like this:

These contrasting graphs show a stark contrast.

Nevertheless, I have a choice here. I can either A) decide that my life’s circumstances are too hard for anyone to make much of—and then get deeply bummed about it—or B) I can dust myself off, remind myself this is the way of the world, and get back to work.

In the past 7 years, I’ve tried both of these options. While A) has some dramatic flair to it, and it’s kind of entertaining for a day or two to feel like I’ve got the hardest life ever in the history of the world, it really does become a drag quite quickly.

Then there’s that niggling pest of the truth. Life is tragic and obstreperously uncooperative for everyone. It’s not as if everyone else gets to zoom down a 10-lane highway to their goals, while I toil on a dusty, rutted, mountainous path. Writing is hard work for everyone. I’m not sure anyone finishes a book without having her momentum interrupted. (And, if so, I sure as hell don’t want to know about it).

So today, I’m going to choose B). And I’m going to keep choosing B) until it becomes something resembling a habit. I’m sure life will step in the way of my habit, and it will piss me off all over again, but it wouldn’t be life if it didn’t.

Thus, once again, I get to re-learn another time the single most important lesson of Chronic Town: Live the life you have because it’s all you have. My life is one that doesn’t allow for much momentum. But I am back writing today anyway. Who says you need 21 days after all?

How about you? Do you have a tough time generating momentum to accomplish your goals? Or are you able to work steadily every day?

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Two Lists – One Life

November 15, 2011 at 6:32 pm (Uncategorized)

Here is how I would have liked to spend the last week:

• Writing four blog posts
• Writing 16,000 words of my memoir
• Building the first snowman of the season with Andrew
• Walking through the snow at dusk with Jay
• Reading to Andrew
• Talking to my Dad, who wants to ask me a few questions about blogging
• Attending an extremely cool-sounding workshop about teaching creative writing to elementary students

Here is how I actually spent the last week:

• Spending a day at the Cancer Treatment Center getting IV antibiotics in the hope of licking a nasty sinus infection that four courses of antibiotics haven’t cured
• Starting my fifth course of antibiotics
• Shooting saline solution up my nose
• Shooting liquid antibiotics up my nose
• Shooting steroid spray up my nose
• Not opening shades because the light triggers migraine
• Not walking downstairs because my vertigo has gotten a lot worse
• Asking Andrew to shut off the light and close my door
• Asking Jay 5,000 times each day, “Are you sure you’re not feeling overburdened?”
• Telling Jay for 5,000 times each day, “I’m so sorry I can’t help you make dinner/put Andrew to bed/supervise a play date/do the dishes/feed the cats, etc.”
• Feeling sorry for myself
• Feeling overwhelmed
• Wondering what the f#*k is wrong with my sinuses
• Wondering why I have neurosarcoidosis

I caught a cold from Andrew a few weeks ago. The cold quickly became a sinus infection. My doctor prescribed different rounds of antibiotics–Avelox, Cipro, and Ceftin. The sinus infection scoffed at these puny drugs and got worse. It triggered the neurological symptoms that have plagued me since sarcoidosis moved into my brain and cranial nerves in 2007. Migraines, vertigo, and blind spells have flattened me for the last week.

There’s nothing to do but rest, take more antibiotics, and zealously rinse my sinuses. It is frustrating to want to be out in the world—working and playing—and to be stuck in bed.

But, in the words of my husband’s favorite football coach, it is what it is.

As I made my two lists that distinguished what I want from what I have, I realized that we all operate between our hopes and our realities. Whether or not we have a chronic illness, we all have to find a path through what we’d like to be doing and what we must do. Going to work, raising a kid, and tending a marriage require all of us to give up the luxuries of our desires for the longer-term satisfaction that comes with accepting responsibility—even when it requires not doing exactly what we want in each given moment.

Living with two lists is hard. It would be a lot easier to bury our hopes and wishes under so much proper responsibility that we forget (almost, but never quite fully) the taste and texture of our dreams. It would also be easier to put our responsible to-do lists through the shredder of petty self-centeredness.

I admire the people who live with two lists gracefully. They do it with humor, compassion, and joy at what they have. They show up for the life they have, but don’t abandon their dreams.

I am trying to copy them now, even though I feel righteously indignant that my head is throbbing, that my vision has blipped out three times while writing this, that the act of writing is making me feel sea-sick. I could flip out. I could have a meltdown. But I am trying not to.

How about you? Do you live every day with two lists—one of what you really want to be doing and one of what you end up having to do? Who do you know that does a graceful balancing act?

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Spiders All Die in the Winter

November 9, 2011 at 3:30 pm (Uncategorized)

Last night I told my 7-year old son Andrew an assortment of half-truths, full-blown lies, and other comforting pabulum to get him to sleep.

Really, I’m not a pathological liar. I generally try to tell my son the truth. But it was after 11pm, and Andrew had been laying in bed, his anxiety building by the minute, since 8. He had school the next day, and while the boy claims he doesn’t need to sleep, he’s a bear with less than nine hours and that ship was sailing.

When I poked my head into the night-light room for the umpteenth ten-minute check-in, Andrew’s voice rose out of the gloom, tight with anxiety. “Mommy. Can we do another spider check? I think I saw one on the wall.”

I choked back the deep, annoyed mother-is-thoroughly-vexed sigh that was rising in my throat and entered the room. Before I turned on the light, the shapes of his partly-disassembled hundreds-of-pieces Lego sets lurked in the dimness like broken-down beasts. The harsh, bright light instantly dispelled the illusion. We looked through Andrew’s tangled bedding. No spiders. We stared at his walls. No spiders. I even forced open his closet door (nearly jammed shut with all the junk in there) and took a peek. No spiders.

I turned the light back off and tried to smooth Andrew’s blonde cow-lick down. It popped right back up, along with his fears. “Don’t leave,” he whimpered. I didn’t. I sunk down on the floor next to his bed, and stroked his head.

“We talked about this last night,” I murmured—hopefully soothingly. “Spiders hibernate in the winter. You have nothing to worry about.

“But Daddy and I saw one in the bathroom tonight.”

“Oh, well. That must have just been a silly one that didn’t know it was time to hibernate.”

“And Anna [his 12-year old babysitter] told me she saw a hairy one with pincers on the side of the house.”


“In the summer.”

“See. It would be hibernating by now.”

“But maybe it’s a silly one, too. And is in the bedroom.”

Before you think I have a completely hysterical son, let me note that Andrew has good reason to be afraid. Eighteen months ago, when he and I were visiting my sister after a trip to see the sarcoidosis specialist in Cincinnati, our beloved cat Kate died after being bitten by a black widow spider. Kate was as close to a sibling as Andrew had. She was a tiny jungle cat Jay and I adopted when we lived in Palau and then brought back to Montana. You can read more about her in “Herding Cats” (https://chronicville.wordpress.com/2006/05/25/herding-cats/). Jay was at home when Kate died. He got her to the vet when she seemed sick. The vet poured IV fluids, antibiotics, and anything else he thought might help into Kate’s little body. Nothing worked. She died after a day in the vet hospital.

Andrew was heartbroken. We all were. It helped a little that while we were visiting my sister, Andrew made a new feline friend in one of my sister’s cats, Fireball. It helped even more that my sister needed to find a new home for Fireball. She delivered him to us in Montana a couple of months later, and Andrew loves Fireball. But he continues to grieve Kate’s death. He keeps a “Kate Family Journal” in which he writes to Kate a couple of times a week. He tells her what’s going on, and usually draws her funny pictures—Kate flying a spaceship, Kate conquering Darth Maul, Kate and Andrew’s private amusement park with Star Wars rides.

I understand his sadness. I miss Kate too. I have always felt the death of my animals—mice, rabbits, dogs, and cats—with a sharpness that makes it hard to breathe sometimes. When I was 8, my first rabbit named Barbara died (she was followed–but not replaced–by Barbaras II and III) with hardly any warning (much like Kate), I wore the key to her hutch around my neck for months. I didn’t keep a separate journal for my feelings about her, but I did record my grief in my thick, hardbound diary. On July 7, 1980, I wrote, “Barbara died today. All the fun is gone.” Andrew comes by his sorrows honestly.

Jay and I researched children and grief. That’s how we got the idea of asking Andrew if he wanted to keep a Kate journal. We learned that kids this age are formulating their first intellectual and emotional conceptions of death. A pet’s death is usually the first opportunity a young child has to grapple with the idea of death—someone you love has suddenly ceased to be. It’s not fair. It makes no sense. And it hurts like hell. The professionals I sounded out said that Kate’s death was doubly important for Andrew. As his little brain is stretching itself to grasp the finality and totality of death, he’s also confronted with a sick mother. His mom disappears into the hospital and becomes too sick to participate in his daily life (again with little warning or explanation). Sometimes she seems better. Then suddenly she’s back in bed, clutching her head, or she’s stumbling around the house with blind spells or vertigo, or she’s getting yet another surgery. Is she going to make like Kate and die?

If I think about this too long, I’ll drop down the rabbit hole of guilt that I’ve caused my beautiful boy such pain, anxiety that he has too much to handle, and fear that I’m not helping him through this as best as I can. All of this comes rushing through my head as it did last night, when Andrew’s fear of spiders quickly did its own plummet—back into the familiar refrain of missing Kate, hurting for Kate, worrying a spider will seek him out and send him after Kate.

I know from dealing with my own night-time panics, that reasoning and rationality aren’t always the path through the treacherous landscape of the mind’s fears. Nevertheless, I’ve tried with Andrew—and I tried again last night—to talk through his fear. Spiders don’t often try and attack people. Kate liked to hunt bugs. The black widow probably bit her because she was pursuing it. Even if a spider did go against its survival instinct and seek out Andrew in his bed and bite him, he’s a lot bigger than the 6 pound tabby. It wouldn’t kill him. We would rush him to a hospital. He would be just fine.

Andrew’s anything but stupid. He has a riposte for every reassuring statement. He knows I cannot guarantee his safety from spider bites—or anything else. As midnight draws closer, I can see him becoming exhausted beneath the agitation, even in the dim light of his room. He must sleep. He will feel better in the morning. What I need to do now is offer him enough comfort to drift off. I promise him he will be safe. I swear nothing will happen to him. But he is seven—almost eight now—and he’s too wary and intelligent for these blithe reassurances that calmed him when he was four and five. He has evidence of my powerlessness. I couldn’t protect Kate. I can’t keep myself well. How can I guarantee his safety tonight? He needed something more.

I’m tired too. I look for the nearest authority I can find—and see it glowing in the gloom. My Android, with its handy connection to the Internet. I seize it.

“You know what? We’re going to look up spiders on Google and see if poisonous spiders live through the winter—even in the house.”

I type spiders and winter and Montana into the search engine and go to the first article Google brings me. I don’t even bother reading it. “It says here that spiders die off in the winter in Montana,” I say. “It’s too cold for them to live. Even inside.”

“What about hairy spiders with pincers? Check if they live in the winter,” he says.

I dutifully type in “hairy spiders with pincers in Montana” and “winter,” and avoid the terrifying pictures Google finds me. “Yep, it says they die too.”

“What about black widows?”

I type again, cast another cursory glance. “Nope. They die before it snows. And it’s already snowed.”

“Brown recluses?”

“Too cold for them.”

“Hobo spiders?”

What is this kid – an arachnologist? How the hell did he learn about hobo spiders, I wonder, before saying. “Hobo spiders are especially susceptible to cold.”

Andrew takes his first real breath in a couple of hours. “I’m tired,” he announces.

“I bet you are. Now go to sleep. Nothing will happen. You are safe. I will never let anything hurt you.”

He’s asleep before the next ten-minute check in. He looks heartbreakingly little beneath his Star Wars comforter.

What will happen when Andrew has grown enough to look for his own answers on the Internet? Am I setting a terrible precedent by lying to him?

I choose not to lose myself in the cobwebs of my own fears. He is asleep. I should be too. There is plenty of time to worry about spiders, illness, proper parenting, and the value of truth tomorrow. For now, I must sleep.

What about you? Do you lie to your kids sometimes to help them through a tough time? Or to yourself? Is it important to always tell the truth?

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Whose Life Am I’m Writing About?

November 8, 2011 at 5:43 pm (Uncategorized)

I had a strange experience the other day. I found myself taking notes on my own life.

I’m trying to write a book-length memoir version of this blog. Chronic Town, the book, will be the story of how an overachieving, globe-trotting thirty-something woman’s whole life got turns upside down (and inside out) by becoming a mother and chronically ill at the same time. In the process of losing everything familiar about her life, she comes to truly love her life for the first time.

Sounds great, doesn’t it?

I thought it wouldn’t be terribly difficult to write the book. After all, I wrote a reference book a few years ago. And I’ve been writing about the intersection of motherhood and chronic illness for five years on this blog. How hard could cranking out another book be?

Very, it turns out. It seems to be that there’s a big difference between writing about Internet resources for social studies students and crafting your own (sometimes painful) life stories into a compelling book. Just because I find my life’s events rather interesting doesn’t mean everyone else will. Then there’s the issue of finding the right narrative structure. I can’t just regurgitate everything that has happened to me between 2004 and now. A good memoir, like a good novel, has to have a beginning, middle, and end. Things need to happen. The main character (me) is supposed to grow and change. There needs to be a point to it all.

Given all this, I decided I should outline the “plot” of my book. I’ve tried winging it without an outline—sitting at my computer and letting the structure of the piece come to me as I write. Let’s just say that didn’t work out so well. I ended up writing a hundred pages of “background.” I was exhausted, but I hadn’t even gotten up to the becoming-chronically-ill part of the story. At least I don’t need to make up events like fiction writers do. I’m not that imaginative. My challenge is to determine what events go into my book and how to write about them.

I was excited to start my outline. I bought index cards and a new pen. I cleared three hours to plot out my book. I cleaned off my desk so I’d have room to shuffle my cards. I made myself a cup of tea. I got up to go to the bathroom. I got myself a glass of water. My tea needed more milk. I was about ready to duct tape myself to the chair. “What is wrong with you?” I asked myself in a not-very-nice tone. “I can’t remember what’s happened in the last seven years,” my inner story-teller squeaked back. “I mean, I know that I nearly got mis-diagnosed with lymphoma when Andrew was three months old. Then I had surgery to biopsy my lungs. I was diagnosed with sarcoidosis. The disease moved to my heart, liver, bones, and brain. Andrew got older. I felt crappy. I started getting tough drugs like chemo to treat the illness. Andrew got even older. I felt even crappier. I got depressed. I gained 100 pounds. Then I started getting Rituxan. Now I feel a little better and Andrew is seven. Where’s the freaking story in that?”

Where indeed? Good writing requires details—not extraneous, over-descriptive details (because, really, who wants to know that much about the texture of chemo puke?) but concrete scenes upon which a story is built. My life—the raw material of my memoir—doesn’t lack for book-quality events. All of us in Chronic Town are perched (literally) between life and death. It would make good reading. I am not suffering a shortage of drama. However, living such a “dramatic” life makes it hard to keep track of the nitty-gritty details. Or, maybe, I’m just a lazy note-taker. I didn’t record what surgery I had on what date. When the doctor told me I could drop dead at any moment, I tried very hard not to remember the scene-specific details. There is an inherent tension between surviving in Chronic Town and writing about Chronic Town.

After puttering around with the outline for an hour, I remembered my blog. Maybe by reading my old entries, I could re-connect with the specific details I needed for my book. I started at the very beginning. I liked what I read. But some of it was like paging through someone else’s life. I was surprised at everything that had happened to me. I had pneumonia in 2006? Really? Apparently I’ve wiped from my memory the five weeks I spent in bed with that. (Or maybe they just bled into all those other weeks – but the purpose here is not to start my very own pity party.) So I started to take notes. Here are some of my index card entries:

• October, 2006. Liver problems started. Doctors screening me for Hepatitis C.
• October, 2006. Broke foot on long hike. Stress fractures more likely with long-term prednisone use.
• October, 2006. 2¾ year old Andrew was pretending to pick up prescriptions for me in his toy taxi.

To all of these, and to many more of the events I perused on my blog’s 2006 archives, I thought, “Really?” I nearly thought, “This poor woman. Look at everything she’s had to go through.” Nearly. (See–no pity party.)

I decided I was experiencing early onset Alzheimer’s, had a drinking problem I didn’t know about, or else my life was just too damn eventful. I’m guessing it’s the latter, but maybe I’ll discover the Alzheimer’s or the alcoholism when I make my way through the blog’s 2007 archives tomorrow. As it is, I’ve got a stack of cards relating to the somewhat-awful or heart-rending events I wrote about in 2006.

I found it all a little weird—this taking of notes on my own life, this evaluation of what calamity is book-worthy and goes in the narrative scrap bin, this excavation of my existence for memoir material. And it finally hit me that writing this book means setting aside what my life experiences meant to me and instead looking at them through the lens of how others will react to them. This isn’t bad. It’s just another framework.

I’m glad I wrote all those blog entries. I don’t think I could tackle this book project without them. Thanks to you long-time readers for coming along on this journey with me. And for those of you who are new to my blog, I encourage you to take a stroll through my archives. There’s a lot there. You can even take notes.

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November 4, 2011 at 4:59 pm (Uncategorized)

I decided to participate in National Novel Writing Month–NaNoWriMo–for the first time ever this year. For those of you who – like me just a few weeks ago – have never hear of NaNoWriMo, let me tell you exactly what it is: collective insanity. No wait; I mean it’s a very cool opportunity to join other writers across the world to beat yourself to a pulp, er, push yourself to write the book you have inside you. In a month. My snarky asides notwithstanding, NaNoWriMo truly is an amazing opportunity to stop thinking, “I could write a great novel,” and just freaking do it. In a month. You can choose the 25,000 or 50,000 word options. The NaNoWriMo Web site helps you track your daily word count, find and be connected to writing buddies, and stay focused on getting your novel done during the month of November. Look for me there. I chose the super-imaginative login name of rebecca.stanfel.

My 7-year old son, Andrew, had more fun choosing his NanNoWriMo login: Lego EXO Special Forces Battle. Gee, I wonder what he’s interested in? Before you call Child Protective Services on me (“She’s making her 2nd grader write a 50,000 word novel in a month!”), let me be clear that NaNoWriMo offers a kid version with kid-friendly word counts—either 250 or 500 words.

Since all Andrew ever wants to do these days is play Lego Wii games, connive for more Lego Wii time, or complain about how little Lego Wii time his evil parents allot him, I was expecting him to resist the idea of writing a kid-sized novel. So, I spent an afternoon marshalling my resources to convince him.

Here’s how the conversation proceeded.

Me: I am going to write a novel this month using this very cool program called NaNoWriMo.

Andrew: NaNoWriMo. Hah!

Me: Do you want to write your very own novel.

Andrew: Yes! Can we start now?

Me: I don’t know what I’m writing yet.

Andrew: I do!

Me: Don’t you want to outline it first?

Andrew: Nah, I’m going to draw pictures to go with it.

And this has pretty much set the tone of our family NaNoWriMo interactions. Andrew is fearless, innovative, and non-procrastinating. I am cautious, stymied, and have made up multi-page to-do lists to avoid starting writing. (Clean cat box. Make bed. Pair socks. Watch snow melt. Write down a theme for NaNoWriMo. Shred paper with theme on it and place into cat box. Clean cat box. Repeat.)

I’m exaggerating. Sort of. My biggest obstacle to getting writing all things NaNoWriMo is that I just got a dose of chemotherapy last week, and it makes me very tired. Still, despite my exhaustion, I’ve found plenty of novel-reading and snow-melting time and very little get to work time.

That all changed yesterday. I picked Andrew up from school and we went to my office to launch our NaNoWriMo projects. My goal is to finish the memoir version of this blog—which a couple of agents are interested in seeing. Andrew’s is to combine as many Lego themes and types of battles into one cohesive work that contains robots, high-tech weapons, and as much gore as his Mom will let him get away with. We got treats from the café downstairs to sweeten the work. Andrew got 4 mini-donuts. I got a coffee with three shots of espresso sunk in it, and still, amazingly felt tired.

I typed a title and paused. In the pause, I could hear Andrew’s pencil squeaking and scratching out a symphony next to me. I wrote a sentence. I backspaced over the sentence and rewrote it with no changes. I sighed and took a peek at my partner. His page was black with writing. I had one sentence, a crappy sentence at that, and wanted to quit.

It hit me then. Andrew wasn’t pausing to re-read his every word. (If he did, he might have noticed that he had a LOT of misspellings.) He is simply writing down the ideas that he thinks are funny and cool. He likes getting the stories out of his head and onto the page. If he can draw an awesome picture to go with the words, so much the better. He didn’t write, erase, loathe himself, write again, erase again, and want to give up on living. That’s what I do.

I decided to use Andrew’s unbroken creative spirit as inspiration. No more sighing, self-hatred, and real-time micro-editing. I would write my story without stopping. I would mend my own creative spirit that got shredded by perfectionism and nit-picking.

And a funny thing happened. I wrote 800 words in an hour. Even stranger, I enjoyed writing them. I didn’t need any more espresso.

If I can’t have Andrew by my side for every day of NaNoWriMo, I can still use his energy and delight as my example. Who knows? I might even write into my story a night-vision robot, a massive Lego battle, or some blood-drenched illustrations.

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