Distraction vs. Focus

There are times when so much is going on that the feeling of being overwhelmed is overwhelming.

There is always too much to do and it feels like it all needs to be done NOW. And when you feel overwhelmed, somehow you find more and more things to add to the list.

There are times when so many overwhelming thoughts are flowing through your head that they take over the necessary thoughts of your everyday life.

There are times when overwhelming knowledge of the state of our world creates a level of panic and critical sense of responsibility that is almost crippling.

When you have a GBM – or a previous (?) GBM – it’s hard to believe that some things can wait. Everything could change in a matter of a day. But prioritizing is a critical life skill, brain cancer or not. So I gave it a shot.

Stress and fear of its known effect on my seizure threshold is a very strong motivator to figure out how to prioritize thoughts, actions, and to-do lists. As a former ‘master’ multi-tasker, convincing myself that THIS thing trumps THAT thing is a new challenge for me. Knowing what needs to be done NOW vs. what can wait until ‘after’ requires deep breaths, positive self-talk, and good anxiety medicine.

Letting go of the need for perfection. Learning that going with the flow rather than trying to do more than anyone will expect or notice while they’re visiting and celebrating 50 years of marriage of two of their closest friends is ok. Asking for the help of family and friends to help manage the necessary details isn’t as hard as you’d expect when you accept that you can’t do it all without them.

The surprise outstanding permits on the house from 15 years ago that need to be resolved can’t be resolved today. I need to accept that it may take longer than is reasonable. We’re dealing with a government agency after all.

Getting quotes for a new fence can wait a few days – my temporary repair job is going to hold, even if it’s not beautiful.

Decluttering the house can wait a few days and honestly, will take weeks. We recently bought a paper shredder. I can’t believe we’ve gotten by without one up to this point. The stacks (and we’re BIG stackers) are slowly becoming smaller and smaller. I never expected shredding paper to be so satisfying.

The lawn – which is surprisingly still growing even though it hasn’t been watered in months – can wait to be mowed.

The spring garden doesn’t need to be planted today. Plants will still grow two weeks from now as well.

We’re doing a lot already to reduce our negative impact on the environment. We can do more. Even though I had to suppress my sense of panic and responsibility, I have to realize that our efforts to reduce our reliance on plastic, over-packaged products, and continue to… The list is long.

This is by no means a complete list of my thoughts, but it gives you an idea.

What I’ve learned in the last few weeks is that prioritizing that overwhelming list of ‘critical’ feelings and actions is hard, but ultimately worth every decision of THIS vs. THAT.

And Happy Anniversary Mom and Dad!

Another MRI on Friday… Not that it’s adding to my anxiety or anything.

 

 

 

 

Thoughts on potential employment

As a follow up to my Existential Conflict self-pity extravaganza, I was giving some thought to any and all job prospects.

Jobs that would be completely out of the question:
Driver – Truck, Taxi, School Bus, Delivery….you get the idea. While I’m completely capable of driving and have been approved by the respectable government organization which makes such decisions, I’m doubtful that any business would hire me to drive.

Strobe light tester – flashy lights and seizures have a long history of incompatibility

Surgeon – I’m not skilled for this role in any way, shape, or form

Mathematishian – I can’t even spell it right…clearly I’m not qualified for complex number problem solving. Also, I like words WAY more than numbers. Which is ironic since I spelled mathmatishian wrong…again.

Rave DJ – 1. Loud, repetitive techno music 2. Afore mentioned strobe lights 3. My aversion to rooms full of young adults under the influence of mind-altering drugs with various forms of glow sticks and pacifiers.

My non-negotiable requirements for any job I might consider:
Nap time – Liberal policies on crawling into a comfy corner or business-provided cot to have a little shut eye when my body tells me its time to take a little break with my eyes closed

Flexible schedule – Not a boiler plate policy allowing me to work at home (though that would also be required as well), but a level of flexibility that would allow me to pick up my kids after school, take days off when the kids are off of school (including summers), attend my regular doctor appointments, and unlimited random days where the Nap Time clause is insufficient for my needs. My hours will need to be strictly limited to 9am to 12pm only.

Fragrance free workspace – Perfume and ‘fragrances for men’ are offensive to the nose, as are artificial smells like cinnamon candles, air fresheners, or unreasonably scented hair and beauty products. All fragrances must be pleasing and approved by ME.

Vegan, protein rich snacks – Blood sugar balancing nutrition, vegan and delicious, must be readily available to prevent states of hangriness. No one wants to see me when I’m hangry, it’s not pretty.

Dog friendly workplace – My dog has separation anxiety and needs to be with his people or he cries. No one wants to be responsible for making my dog cry.

After giving it more thought, maybe I don’t really want a traditional job. I realize that not HAVING to work is a luxury and I am very grateful for that. Being a stay-at-home parent is something that not everyone can (or wants to) do. It can be hard, but rewarding work. I have the opportunity to volunteer in the school library, accompany my son’s class on field trips, and go grocery shopping in relative solitude.

While occasional feelings of guilt and insecurity for not being a rare Super Survivor may pass through my mind, I realize that my life is pretty awesome (aside from the cancer part). Self pity posts are hereby over. We shall now return to our regular programming.

Unchaperoned Meals

When I was young, my dad traveled on business trips regularly. My mom traveled less frequently, usually to Las Vegas to play some Black Jack or chat with the counterfeit characters lingering on the street corners about what they plan to do with their lives when they decide to climb out of their costumes in the dangerous heat. Ok, not really, but it’s a funny image thinking of my mom counseling strangers in Elmo-ish costumes. None the less, my mom DID travel…just not to Las Vegas. And everyone knows we played our Black Jack games at home.

These brief experiences with single parenting correlated with some culinary adventures.

When my dad was gone, tuna casserole was invariably made, complete with the potato chip topping. My dad HATED tuna casserole (or ‘hot dish’ if you prefer), so it was our opportunity to partake in this traditional midwestern delicacy.

When my mom was gone, we ventured into Spam and beans – previously only a camping cuisine. My dad and I quickly determined that Spam and beans tastes MUCH better 3 days or more into a backpacking trip and should be reserved only for those occasions.

When my husband travels, I venture boldly into child oriented meals. ‘Chick’n’ nuggets, macaroni & ‘cheese’, ‘vegan pigs’ in a blanket, plain noodles with margarine, grilled cheese sandwiches…you get the idea. We’ll also take the super lazy route of having cereal for dinner – enticingly called ‘Breakfast for Dinner! Yay!’ Last night, my children decided to make our evening meal. We had toaster waffles and ‘sausage.’ These meals aren’t particularly healthy, but I’m certain we’ll recover. We survived the tuna casserole and the Spam and beans after all.

What are your favorite culinary adventures when you are left unchaperoned?

Alone Time

I know that some people get energized from being social and having a full schedule of interesting (and sometimes mundane) things to do. My husband is often in this category. He gets home from a long day at work and wants to visit with neighbors, play with the kids, go to shows or events. He is an exuberant and enthusiastic extrovert.

I however, am an introvert (opposites attract?) and have a brain injury. Introverts re-energize by getting lost in their own thoughts, having quiet time, reading a book, mostly things that don’t require talking to someone else. This means that the alone time I need to re-energize is no longer optional, it’s mandatory. I get overstimulated with a full schedule and socializing, even with the people I love most. This overstimulation means that I shut down – I can’t hear conversations, I can’t focus, I get exhausted, and I have to say, ‘it’s time to go’ with little warning. This is exacerbated if I didn’t sleep well the night before – tiredness leads to tiredness or something like that.

Luckily, the people who know me and have been there through the last 18 months know that what I’ve described here is immensely better than it was in the early months. Then, I had to wear earplugs everywhere, visits were limited to very short periods of time, I excused myself from the room without warning, loud noise (including music, and my definition of loud was just above a whisper) was intolerable and it wasn’t unusual for me to nap twice a day. My family quickly learned the signs that I was being overstimulated and gracefully, generously helped me enter my cocoon of solitude.

For people who don’t know me or my ‘situation’, I can only imagine what they’re thinking. I don’t look like I’m sick, so when I find it difficult to have a normal conversation, I’m aloof or a bitch. When I get to the end of my tolerance for noise and stimulation and I look at my husband, giving the signal that it’s time for a speedy departure, I’m ungrateful or a bitch. When I no longer attend concerts or events with my husband, because my low tolerance would completely ruin his experience – we’re clearly drifting apart or I’m a bitch. When I need to excuse myself from the room abruptly to get a moment of quiet so I can go on, I’m just a bitch.

I have good days and bad, just like anyone else. My bad days will find me entering into my Hobbit hole for a nice long nap. I don’t want to talk to anyone. I de-prioritize everything on my to-do list. I read a book. I have another nap.

My good days – when I’ve gotten enough sleep the night before, I can spend an entire day taking kids to San Francisco. I can clean the house from top to somewhere in the middle. I can garden with focused intent on ‘growing things we can eat, dammit’. I can run errands at a super hero pace. I am overjoyed at being able to speak without hesitation, finding every word needed. I make valiant attempts to fix our dryer that won’t start. I cross things off my list at a steady pace and feel no need to add ‘shower’, ‘eat’, ‘get dressed’ to the list, just so I can cross them off. Good days rule! And then I go take a nap and have some alone time.

Post brain cancer diagnosis/treatment, I’ve had to relearn and adjust my understanding of my limitations. I understand that my body and brain can only handle so much. I sometimes feel guilt for needing to retreat into solitude, but I understand that it’s needed. I have a brain injury and a seizure disorder and the overstimulation is exhausting. I want to do it all, but I know I can’t. I want to fill each and every day with seeing friends, volunteering, writing, playing non-stop with my kids, or escaping into nature. But I can’t do it all. Perhaps its cliché, but I have to take care of myself so I can take care of others. I have to take care of myself so that I can continue the fight energetically.

I see people who are so busy that they’re taking or making calls while completing their everyday activities – dropping kids off at school, walking the dog, grocery shopping and my least favorite – while they’re on the toilet. But EVERYONE needs alone/quiet time to just breathe, appreciate what you have, smell the flowers in bloom, feel the warmth of the sun, do something for yourself. Even my very social husband needs his alone time – playing drums, exercising, or walking the dog. Maybe the amount he needs is smaller, but he still gets re-energized by doing something for himself.

I write this post more as an acknowledgement of my needs, giving myself permission to escape into solitude without guilt.

But take time for yourself every once in a while to appreciate all of the amazing things you do, enjoy something you love, and nurture your soul before you go back to the daily grind.

 

Assume Nothing

I was thinking about the assumptions that people make about others – specifically people they don’t know.

Having an invisible disease, I’m very much aware of the fact that what I do and say sometimes doesn’t indicate that I’m fighting for my life each and every day. People who know, but maybe don’t have the details, assume I’m cured. People who don’t know may wonder why I’m not working; why I close my eyes and pause when I can’t find words that used to just slip out of my mouth; why I forget to return phone calls, emails, or complete action items; why it seems like I’m ignoring people when our surroundings are overstimulating; why I have multiple reminders/alarms on my phone for things I do EVERY SINGLE day, but would forget if it weren’t for the reminders/alarms.

I’ve occasionally wondered what it would be like to be someone else. Specifically random people I see on the street. Maybe that’s weird, maybe everyone does it, I don’t know. But knowing what my life is like, I wonder what theirs is like – to experience living in someone else’s world for awhile. But wouldn’t it be interesting to see the world through someone else’s eyes? What choices have they made about what to do for a living? What political/social/religious views do they have and why? What would it be like to excel in areas that we stink at in our own lives – like speaking 2 or more languages fluently, skateboarding without risking life or limb, singing without making the dog howl… Or experiencing more serious things like having a mental illness, making the decision to pay rent or buy food for your family this month, feeling ostracized for being ‘different’ in the eyes of others.

So, while we are quick to make judgements about others – and we ALL do – maybe we should pause and think about what it might be like in their world. Don’t assume that mother with 3 children under 6 who’s lost her patience and yelling is a bad person. Maybe she’s exhausted and just really needs a break to take care of herself for a couple hours. Don’t assume that the quiet guy in your building is reclusive and perhaps mentally unstable. Maybe he’s an introvert and has a hard time initiating conversations and is working out an engineering challenge in his brain while he gets his mail. Don’t assume that the tattooed guy driving by your house in his jacked up truck is a self-centered ass – maybe he’s a giving person who has a happy family, but has an affinity for big trucks and body art. Appreciate his cautious driving down your block and the wave he offers each day.

Don’t assume you know someone based on the way they look or their actions in a single shot of their lives. Take the time to get to know them or at least consider what it might be like to live in their shoes and see the world from their eyes. Maybe you’ll be lucky enough to have them doing the same for you.

(Thank you Craig for the reminder and the inspiration)

Today’s Beautiful Things

Cuddling with my son in the car while we waited for the first bell to ring (his sister starts 20 minutes before him)

Sunshine on my back and the cool winds of California winter/spring

The smell of flowers in bloom and the beauty of the blossoms filling the trees

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Watching birds gather nest materials for the first nest in our birdhouse (our new tenants) – my dad confirmed that they’re Oak Titmouses

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Seeing the finches eat through 3 bags of seed in less than 2 days

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Witnessing the squirrels risking their lives to come into the yard in search of nuts they buried in the fall (the dog has yet to catch one)

Wearing sandals as we approach a few days of summer-like temperatures

Finding so many signs that life is renewing and vibrant as we approach spring

Reminding myself that I’m still tumor free

Add to list: seeing the first butterflies of spring

It’s Official, There’s a Drought

(This post has nothing to do with Brain Tumors/Cancer)

It’s strange that while the Midwest and East coast are fighting blizzards and many feet of snow, we’ve declared a drought here in California. We’ve had so little rain this year, that we’re in danger of running out completely. Well, ok, that’s an exaggeration for now, but you get my point.

Voluntary rationing has begun. We have to explain to our children what that means and get them thinking about ideas to use less water to help the idea really sink in. Here are some things you Californians can do:

  • Turn off your sprinklers – seriously think about growing food, not lawns
  • Put buckets in your showers to capture some of that water
  • Turn off the shower/faucet while you soap up or brush your teeth
  • Bathe once a week…ok, try every other day
  • Wash your dishes without running water the whole time.
  • Don’t worry about getting your dishes super clean before you put them in the dishwasher – theoretically, the dishwasher should do that for you.
  • Always do a full load when you run your dishwasher or washing machine. If you have children, look for the clothes, likely still folded from earlier washing cycles and make them put said clothes away, as they should have in the first place.
  • Capture the water that’s draining from the washing machine in a trash can.
  • Don’t wash your cars
  • Use all of that water you’ve captured to water any plants – you will be amazed how much there will be.

These are some of the ideas we’ve read about and came up with for our list. Does anyone have any more?

We’ll hope that the corporations and manufacturers don’t ramp up their water usage before the rationing becomes mandatory. For the central valley farmers, lets allow some of that water to flow their way – we’d really like to continue to eat.

One of the side benefits of a drought is that we’re having spring/summer like weather (after the very cold mornings wear off.) While it’s wonderful to sit outside and soak up the heat while you listen to the ice cream trucks driving around the neighborhood, I think it’s generally agreed upon that we’d rather have some rain. That’s especially true of the die-hard skiers and snow boarders who are being deprived of their usual powdery conditions. We’ll commence our collective rain dances immediately.

Every Day Moments

When the holidays come around, you’re likely to see some people you haven’t seen in a while. Even if they have some insight into how you’re doing through friends, posts, the general grapevine, they sometimes tread carefully. It means they look at you, searching for the ‘real’ clues of your condition. It means they ask how you’re doing, sometimes with a voice that’s tinged in pity and a touch of condescendence – desperately trying to make it come off as empathy. I understand that it’s hard to talk to a person with an often terminal brain tumor, so I don’t mean to be unkind.

You have gotten caught up in the bustle of the holidays and living every day life with your family, trying not to let the thoughts of ‘when will it come back?’ hover over you, pushing out the enjoyment of the moments. Sometimes the questions about your health catch you off guard.

When there’s nothing much going on health wise, you try to skip the details of living with short-term memory loss, the monthly vaccine trial shots, the need for naps when the activity gets to be too much. You skip the fact that your hair is nearly evened out (meaning the hair that grew back after your random baldness is almost the length of your other hair), or that you’re done ramping up on your new seizure medications and you live every day doing what you need to so you don’t have another life threatening ‘episode.’ You skip the fact that your children are showing their anxiety, even in the excitement of Christmas. The kids ask if they’re going to get sick like the kids they saw on the St. Jude’s ad on TV. They ask about things that people have said in front of them, thoughtlessly forgetting that kids hear every word they say, even if they don’t LOOK like they’re listening. They avoid books in which one parent has died.

So I’ll  just answer ‘I’m doing great!’ If they continue to look at you like, ‘No, really, how ARE you?’ I’ll throw in a ‘the tumor hasn’t returned yet.’ They still stare, expecting more details. Details that I’m tired of sharing and don’t want to share now, at this party I’m enjoying. I don’t want them harshing my mellow, as it were. So, I answer, ‘Well, I’m still alive, so I’ve got that going for me. Which is nice.’ I appreciate the interest in my health, really, but please take the cues. I’m taking the opportunity to live my life ‘normally’, don’t take that away from me. It can all change in a heartbeat, so let me enjoy my very fortunate string of Between Days. Let me enjoy the beautiful moments I’m lucky to have every day while I’m still fighting to be legendary.

Beautiful moments of happiness. You too can have them if you stop and appreciate the world around you.

Random Acts of Living

Some things that have been happening between appointments – one of which happens today – to prove that I’m still practicing living and finding joy every day.

Taking a sauna with family, sharing stories and ideas of the world.

Trying to capture one of the many strange/cute things your pets are doing and missing it EVERY TIME. (Can’t go viral with that kind of timing – must work on my video quick draw)

Watching my son push every one of my daughter’s buttons and almost joyfully watch the reaction.

Seeing my daughter attempt to not make mountains out of mole hills and fail (thankfully) to kill her brother – who’s pushed yet one more button. Both of these things drive me mad, but they both do it so well – push buttons and react with explosive passion – that it’s hard not to watch with interest how they solve it.

Regretting the day we got sucked into the Elf on a Shelf trend as we dig him out of hiding and desperately attempt to find new, creative and even funny ways to move him around each night. And sadly watch the ‘Elf suggested’ Acts of Kindness idea we tried meet with only minor success.

Listening to my son learn to play Rudolph the Red-nosed Reindeer and We Wish You a Merry Christmas on his guitar – singing along to ensure he’s getting the notes right.

Helping my daughter to learn about her Finnish Heritage. Listening as she learns facts about birth dates, marriage dates, tales of travels from Finland to America from her grandfather. Seeing her get more excited as she puts it all into a story and prepares to share her scrapbook of old family photos.

Listening to the impromptu jam session my husband begins with his new cajon as my son ‘noodles’ around on the piano.

Seeing my daughter given more responsibility at school by being asked to help with the annual kindergarten winter show.

Going on a date with my husband to have dinner and see a movie, in an actual movie theater. Having adult conversations like other adults do.

Forgetting I bought something for a Christmas gift until it arrives at my door.

Feeling slightly guilty that I’m doing all of my shopping online since 1. I’m still not driving and 2. I hate malls, stores, and parking at Christmas time.

Realizing that the knitting project you hoped to finish isn’t going to get finished in time. Letting it go and coming up with a plan B without stress or worry.

Spending more time living life and less time in a doctor’s office and worrying about what’s going on in my brain. And just every once in a while having that ‘what if it all changes tomorrow?’ thought.

Cigars Are Nasty Gross

We went to a lovely outdoor mall the other night on our way to a family dinner. The Christmas decorations and lights were up and we were strolling along enjoying the view. Then the first cigar arrived. Then the second. Then the third…as we approached the Cigar Bar.

I’m sorry if you like cigars. But I think they are nasty gross. They make me ill. Not just ‘ew, that stinks’ ill. Serious full on headache, nauseous ill that lasts long after I’ve escaped the cigar smoke. I know there are some people who LOVE the smell of a cigar, and clearly enough to smoke the nasty things. While it’s unfathomable to me that everyone doesn’t hate the smell, I understand that sensitivity to smell is a fickle thing.

Sometimes my sensitivity to smell is a blessing, sometimes it’s a curse. Some smells trigger a headache immediately, while others soothe or bring up fond memories. I know this isn’t uncommon, but I find it interesting that my triggers are often very different from other people’s. I know that some smells are linked with an experience – positive or negative – you’ve had. The same is true for flavors, which is why I can’t drink rum. But I digress…

Our dog managed to eat the cat food recently – never having showed interest before, we didn’t think there was much danger. He has a gluten sensitivity and with anything you stop eating for a while (milk, meat, etc..), once you eat it again, it’s going to upset your tummy. Let’s just say that crate training and the after effects of a gluten sensitive dog chowing down on non-gluten free cat food = poop, and lots of it. The associated cleaning experience was unpleasant at best and the smell stuck to me like super glue – even after a long, hot shower. Everyone would hate this smell (and if you wouldn’t, keep it to yourself), but if I made a list of smells I hate and smells I love, I bet it would be different from your lists. So, here are mine…

Smells that trigger headaches or nausea:

  • Garret Station pizza – warmed up leftovers smell almost exactly like the poop. Will never, ever eat there. (sorry if you’re a fan)
  • 99.9% of perfumes & cologne or scented anything – candles, air fresheners, laundry soap, lotions…
  • Cinnamon scented anything – I can eat cinnamon rolls or bread, but just like banana flavored candy tastes nothing like bananas, cinnamon scented things smell nothing like cinnamon and are evil, wicked things.
  • Spearmint – gum, tea, shampoo – doesn’t matter what it is, if it smells of spearmint it’s on my list.
  • Whatever toxin they use to dry flowers – between the cinnamon scented evil and toxic dried flowers, craft stores (like Michael’s) are a horrible experience for me this time of year.
  • Oh, and did I mention cigars?

Smells that make me happy:

  • Lavender in any shape, variety or form
  • Orange blossoms, cherry blossoms, almond blossoms…and night blooming jasmine – from a distance
  • Coppertone suntan lotion (note the ‘suntan’ vs. ‘sunscreen’ – shows how long ago this smell settled itself in my memory) – distinct and unmistakable, it reminds me of trips to the beach in my youth.
  • Freshly mowed grass – I’m not allergic, so I’m lucky.
  • Saw dust – reminds me of my dad building things.
  • Rain – specifically wet concrete right after the rain begins.
  • A certain weed/plant that smells like my grandparent’s farm. Not sure what it is, but every once in a while, I smell it and I’m right back there with my cousins, playing in the barn, throwing a ball over a shed or walking with my grandma to pick wild blueberries or raspberries.

What smells would be on your naughty or nice lists? Or are you completely smell indifferent?