Tumor

Note: this post was composed the day of the surgery, and published much later. To avoid confusion, I must direct you to the following post to find the happy conclusion to this saga! We are learning words like “resection”, “lesion”, “ataxia” and “Learmonth’s phenomenon”.

We pass them around like a hot dish of a grandmother’s brussels sprout casserole nobody wants to eat: “tumor,” “malignant,” “benign,” “the C-word.” 

“Brain surgery” is no longer one of Plato’s theoretical concepts, but something happening to our daughter, today. 

After that first scan I watched myself receive the words, “Unfortunately, we found something…”. I was surprised at my lack of panic. But then words came out of my mouth that I hoped never would, right there in front of my child. I was not prepared for this. I did not rehearse.

This morning I wake and the thought slowly forms in the pre-dawn as if from a script I am reading the first time, someone else’s thought: “lily goes for surgery today.”

I don’t know how to play this role. I can’t identify with this woman walking down this long hallway to the surgical suite beside a waif of a girl with a mass in her brain. I watch her and think, “That is the mother,” but I can’t imagine what she should be thinking or feeling.

The head surgeon, the one with the steel blue eyes, takes my hand in his huge one and fixes my gaze with his confident one. 

There is little to say. So I indicate the stuffy lily chose to keep with her and I say, without letting his eyes go, “She sheds glitter.” 

Christmas Reflections

Lily opened a window on her Advent calendar one day this Christmas and found the verse Isaiah 11:6. We talked about the strange image of these animals sleeping together with a little child for leader. “It’s talking about peace,” I explained. Lily was struck. She declared it to be her “new favorite verse--because I love peace.” It was a poignant moment for a child whose life had been much devoid of peace recently. 

Peace this Christmas meant being home together as a family. Peace meant having a routine. It meant gathering each night around our “Jesse tree” (a family tradition to review the Bible’s redemption story during Advent). It meant no headaches and screaming and vomiting. It meant no early morning trips to emergency, only to be told to go home and give a Tylenol. It meant no IVs and no nurse call bells and no pokes and flushes and vital sign checking. It meant Lily tolerated drinking and teeth brushing and bathing. Peace meant the simplest things, and it meant the world.

I barely did any shopping or baking or decorating or crafting or any of the usual hustle I’ve done around Christmas ever since I was eleven and awake to the drive, the search for that elusive “perfect Christmas”. I was amazed at how much rest there was in simplicity. I soaked in every moment of twinkling lights and silence and loved ones nearby, especially lily. Her bright eyes and vitality and creative spirit bathed everything with a new glow this Christmas.

Limp--a poem, by J

I've been working up the courage to try out a poem on my readers. So, here we go!

Limp

When you are in my kitchen,
Love,

Use the black and white dishrag;

The thin one, the one that’s

Greying to threadbare places

That I have squeezed and rung and twisted

‘Til it wept gushings of warm suds

And all my panic ran down

The grating scruff of your cheeks.

Use it because I have rung pieces of myself

Into the very fabric.

Use it because the grime

Runs quick through those bare places

And with it the guilt

And the fear.

It must run quick because

I am eager to please, and

You are in a hurry, and

Efficiency is essential.

I am glad my favorite dishcloth

Has not outlived its usefulness.

J's Top 7 Tips For Staying Mentally Healthy

Usain Bolt reportedly fuels the world’s fastest body on a diet of mainly chicken nuggets and other fast food. Some people smoke and drink and never exercise a day in their life and live to be a hundred, while others who train hard and eat sensibly end up with high blood pressure--or worse--in their thirties. Some people seem to maintain good mental health with no apparent effort. Others of us really have to work for it.

I am one of those who has to “work out” hard to maintain mental health. So here is my regimen for staying in good mental shape:

1. Physical exercise. Our minds are thoroughly intertwined into our bodies, so good mental health needs good physical health. I have started many workouts feeling depressed, but have finished very few while still in a bad mood. It’s pretty much a fool-proof mood-lifter. Regular exercise has been shown to improve self-esteem, decrease stress, and regulate blood sugar levels. Exercise is also an important part of good sleep hygiene (see number 2, below!)
2. Sleep! It is one of the best medicines for the brain; in fact, the brain actually heals itself during sleep. Sleep also promotes and cements learning, which is particularly critical during periods of intense therapy while you re-learn and re-direct thinking patterns.
3. Cut yourself yards and yards of slack. Chronic illnesses always come with their set of restrictions on energy, motivation and strength. Our culture disproportionately values busyness and productivity. Your worth is not determined by how much you can get done in a day! Know your limits, know your priorities, and choose accordingly how to invest your energy. Then be unapologetic--to others and to yourself--about those choices. When your lack of energy chooses for you, be unapologetic about unscheduled breaks.
4. Get sunlight or light therapy. A lot of people insist on the importance of getting outside for fresh air. I have no doubt it is critical for some people, and have found the outdoors to lift my spirits sometimes as well. However, I actually get a lot more pleasure and stress relief from curling up inside with a cup of tea and a book, than from a walk outside. Outdoor pursuits are also complicated by my disorder--a lot of my fears are around going outside. Now, I do NOT advocate staying indoors and never challenging those fears. On the contrary, challenging my fears has been my door to recovery. But I can’t string myself taut on a line of fear all the time and remain mentally healthy! There are days when I just need to stay in my comfort zone and regain strength for the next round of fear-challenging. But I do find that it is important to get sunlight. I live far enough up my hemisphere however that for much of the year, even if I did spend every daylight hour outside, it still would not be sufficient sunlight for my brain chemistry. So I have a light therapy lamp. I use it mainly in the winter months, but it is helpful all year long.
5. Breathe. There is so much power in just breathing. Several times throughout the day I try to stop and focus only on breathing. It is tremendously calming. It’s my reset button.
6. Re-focus. There is so much involved in this idea, and no way I can sum it up in a single post, but essentially if a particular thought is dragging you down or causing severe emotional pain, it is time to let it go. Thoughts just aren’t worth suffering for. Seriously, it is just a thought. Thoughts that “aren’t working” need to be challenged--often repeatedly--and redirected. You may need help with identifying and challenging problematic thought patterns. This is why therapy is so critical. Now that I know where my mind tends to go and which problematic patterns I am most prone to, I am ready with an arsenal of re-directing thoughts to counter the destructive ones.
7. Treat yourself like a friend. When your self-talk turns dark, think about what you would say to a friend who was telling themselves things like that. Now practice looking in the mirror and being a friend to yourself. There is no reason on earth (or in heaven!) that you shouldn’t treat yourself as well as you treat your friends.

Worry Olympics

You’ve probably heard that the water the athletes in Rio will be rowing and swimming in is pretty gross. I have a morbid curiosity about such things, so I went looking online for more information. (Typically online research is a really bad idea for someone with OCD. I’m not supposed to be Googling health risks, and I don’t recommend you do either. In this case, it worked out in my favor, but...). Luckily, I came across this article.

The article states that people who ingest 3 teaspoons of the water at Rio’s Olympic venues could get violently ill. The title includes the word “just” (just 3 teaspoons), but it might as well read “as much as” for the effect it has on me. 3 teaspoons sounds like a ton! Granted, it may not be much when you consider how much water a swimmer is likely to ingest. But it is about ten thousand times more than the amounts I worry about, and in much less extreme situations--situations like water splashing out of my sink while I’m doing dishes, or my girl throwing stones in our city’s beautiful river. The article goes on to say that even though it would take 3 teaspoons to make illness a high probability, “whether they actually fall ill depends on a series of factors including the strength of the individual’s immune system.” My mind is blown. A whole three teaspoons and they might not even get sick?

Don’t get me wrong. I feel tremendous concern for the Rio athletes. But I don’t think I’ll worry about my girl splashing river water anymore. In fact, I just took her to throw stones in the river. Check out the size of the one she threw in. You can bet she made a splash.

"Aha!"

"Should I? Or not?"

Mud puddles are also a perennial favorite

"I hereby resolve"--J

It’s a new year, it’s a new day!

I’ve been thinking a lot about New Year’s resolutions lately--please don’t groan. I know everyone else and their dog and their dog’s nephew’s cousin (do dogs have cousins and nephews? I guess they must) are writing about New Year’s resolutions. I realize New Year's resolutions are extremely cliché. I know that if you’ve made any of your own in some previous, more idealistic life, you’ve inevitably been frustrated and depressed by the whole thing. And then of course there’s the stereotypical New Year’s resolution like “I’m gonna get fit,” which turns out to be un-measurable and unachievable (let’s go back to grade 10 CALM class, or whatever they called that ‘life skills’ class at your school: a goal must be specific and measurable, etc. etc.--remember SMART?) Even if your goals are “SMART,” you’ll often go through periods of failure and frustration because, guess what, you’re human!

No resolution should be sold without batteries of grace: if at first you don’t succeed, forgive, forgive, forgive yourself. It’s a simple concept, but very hard to actually practice for those of us with a tendency to perfectionism and negative thinking. You know that grace you give your best friend, when she is late again, or does that really annoying thing with her napkin? You turn a blind eye or you gently tease, but mainly you forgive. Kindness. Patience. Give that to yourself. I’m learning that failure isn’t a reason to punish myself, rather, it’s a chance to re-evaluate what I am doing and my priorities. Sometimes, I need to change something about my time management or efficiency in order to get it done. Sometimes, it’s the priority I’ve placed that might need to be down-shifted a little, if only for a time.

Resolutions help me focus on the big picture. I am a detail-oriented person; I tend to get  sidetracked by details and forget the whole point  for the details in the first place. “Can’t see the forest for the trees” type thing. Doing research projects in school, I would spend weeks “researching,” aka. chasing bunny trails through mountainous stacks of books. I’d find myself with just a day--or night--left to actually write the paper, and with nothing but bunny trails that didn’t fit with the path I’d initially chosen for my paper. So I developed a strategy to keep myself from getting “lost in the forest,” so to speak. I would set my alarm for thirty minutes or so while I was researching, and when the alarm went off, I’d take a few minutes to stand up, stretch, get some air into my head, and remind myself of my goals for the paper. If I didn’t set my alarm, I’d come up with all sorts of excuses for why I couldn’t stop at the half hour, or I would ignore the clock, or just lose track of time. I had to force myself to get out of detail-mode for a minute and review the big picture.

One important note, however. Resolutions themselves are not the big picture. After reviewing the big picture, I think about all the itty-bitty steps I need to take to get there, and then go after that first itty, bitty step. That’s a resolution--resolving to take the first step. And I’m talking itty-bitty baby steps here, people. You can always make a bigger goal later, once you’ve managed the first step.

I realize some people think resolutions shouldn’t be relegated to one day of the year only, and I agree. I’m not saying to make goals only on New Year’s day. But New Year’s is just a great, logical, albeit arbitrary time to “set your alarm,” take a break, take some time to think about the big picture, and make some real, SMART goals!

Here are a few of mine:

I hereby resolve:

that when I wake up in the morning dreading the day and wishing I didn’t have to get out of my lovely warm, safe bed (OK, so I’m NOT a morning person), I will set my mind instead on the possibilities the day offers for God to provide abundant life;

that I will mindfully enjoy what I am given in life, just for the sake of enjoyment, knowing that it is for enjoyment that God has given it. Once a day I will taste, smell, look at, listen to or just snuggle something or someone I love, just for the pure enjoyment of it, mindfully paying attention to the gratitude that wells up in my heart (or doesn’t--I know it won’t always, and that’s OK too.)

When my mind leaps to assume blame (whether my own or others’), I will slow down and tell myself: “Don’t assume bad intentions.” It’s pretty rare that the intentions are really bad, and easier to forgive when I assume the best.

I will use my "alarm" principle monthly, weekly, daily, even hourly on bad days(!), either by setting an actual alarm or a calendar appointment, e-mail reminder, weekly routine, etc. I will take 5, 10, 15 minutes to review goals and priorities, and keep the Main Thing the Main Thing.

to simplify my life by getting rid of useless and un-beautiful objects, activities and thoughts. I will start by taking--or just setting aside--one bag of stuff to a thrift store once every week.

to just write, every day if possible, and not care if it comes out wrong sometimes. That’s what editing is for!

that when--not if--I fail in the above, I will serve myself a heaping helping of grace. Help yourself, too.

FREAK-OUT

Had a major freak-out session this weekend. A set-back. It wasn't pretty.

But here's the story: as I wrote in my previous post, I'd been working hard on cooking with raw meat. The first night with hamburger went relatively well. The next time was a lot worse though, I think because I'd had time to ruminate over what I might have done wrong the last time.... The third time was definitely no easier, but the fourth.... Well, let me tell you about the fourth.

I had decided it was time to thaw the roast Jem had bought a couple months back. It took several days to thaw in the fridge. I thought it was sealed from the store, but even so, I had it double-bagged because I do that with things I'm worried about, even if I'm sure they're sealed. Apparently I was wrong, which has only confirmed my fears about people handling un-sealed packages of meat and then touching other things in the grocery store, and putting the trays of meat on the belts where other food goes....

The bloody thing bled all over my fridge.

Panic. My voice rising with my fear, my prayers screeches of, "Dear God, I don't know what to do!" Tears. Pushing Jem out of the way. I have to do this myself. Shaking, crying. Paralysis. Then almost uncontrollable foot-pounding--it's an involuntary reaction of mine to severe mental anguish, sort of like someone might jump up and down from the pain of stubbing a toe, wring their hands after biting their tongue, or writhe during a contraction in labor.

Finally, some decisions through the fog. Wipe, wipe, wipe. Wash hands. Grab the rubbing alcohol. Wipe wipe wipe some more. More soap more water wash hands pour boiling water more alcohol. Splashes on the floor oh no more alcohol.

Jem, very wisely, very calmly, playing with our girl in the next room.

Finally, Jem says after about three hours (I don't remember time passing. It felt like 30 minutes and it felt like 30 hours), I breathed and walked out of the kitchen. Did laundry, had a bath, worried about getting germs from the meat into the bath and splashing from there onto the floor.... When I finally satisfied myself at least momentarily that I had cleaned myself and the bathroom well of germs, I got out, got dressed, and crashed on the couch, exhausted and dizzy. The rest of the day I barely had energy to read to my lily-girl.

But we had roast beef that night.

Now, days later, I'm still worried. What if I missed some of the meat juice? What if some of it dripped onto the vegetables and we didn't notice? Reddish-brown stains keep popping up to taunt and terrify me. And anything in the kitchen I don't specifically and clearly remember having cleaned with rubbing alcohol is scary to touch.

So, even though on the day of the roast, I really gave way to my fears and did a TON of OCD behaviors, I'm doing ERP now. I'm exposing myself to the fear that meat juice dripped on the vegetables, and we've eaten salad every day despite my worry. I don't bleach or use alcohol all over every single reddish-brown stain I see. And I keep using the kettle that I didn't clean completely, and I don't wash my hands after touching it, even though I worry about that for hours and hours until I can take my anti-anxiety meds and fall asleep.

My amazing psychologist, K., is working with me on a type of technique to deal with anxiety called mindfulness. No, it isn't Eastern meditation. It's just the concept that the best way to deal with negative feelings is to stay in the present moment. Anxiety usually keeps me focused on either the past or the future: worry that I did something wrong in the past, terror about what may happen in the future. Mindfulness grounds me in what is going on right now. So I acknowledge that yes, I'm anxious right now, but that the anxiety itself doesn't mean anything about reality. It's just a feeling. And a feeling can't kill me, or anyone in my family. So I stay with the intense feelings of fear, endure them rather than doing everything possible to get rid of them. I don't clean that stain and I don't wash my hands and I tell myself that I won't be anxious forever. My heart pounds and my stomach feels like it's tied up in tangled fishing line and my brain goes over and over the possibilities, imagining the spread of E.coli around the house. It's tough. No, it's brutal. But it works. As the days go by, I notice that I'm a lot less worried about that stain, that kettle. And then I realize that we haven't gotten sick yet, and it's probably a bit late now to get some horrible disease from a drip of meat... how many days ago?

Thanks be to God, Who delivers me from all of my fears (Psalm 34:4).