I need to catch up my sketchbook pictures so I will dot my post with what I've drawn since my last post and write what I've written on the opposite page. This one reads "This little orb was a gift to me. A meaningful gift. A little treasure to mix in with the others, use as a prop for greater compositions. I think my favorite thing about it is the pattern. It is quite jumbled and imperfect. Still beautiful. Seemingly uniform on the surface but upon closer inspection things overstep each other. I relate." Jan 28 2018
Next time you go to a store like Walmart, do me a favour. Go stand near the check out area and just listen. Stop everything, close your eyes if you need to, but just listen. It is insane how noisy a place like that is and before I had my surgery, I never, ever noticed. Now I can't wait to leave places like that. I actually started shopping at stores that are smaller, quieter and more expensive in order to keep my sanity. Fluorescent lighting pushes me over the edge as well. This is one of the new things I've had to account for on the road to recovery.
I am still exceeding expectations on getting back to some semblance of normalcy but I think sometimes the fact that I make a positive post or comment can be misconstrued that I am always that positive or that I've already fully recovered. Most of the times I try to be positive but this is a long road and some reoccurring issues have made me realize that this is not going to constantly be sunshine and roses.
Some days are really good, and I have energy and clear thinking. The day I made this sketch was like that. I wrote "I must be feeling a bit more myself. I felt like doing more than one sketch today. Ivy inspired me to pick up my pen again and she was holding so still until I started to draw. I just changed the drawing when she moved. It feels more fluid this way. From life." Jan 28 2018
My Small Changes
Most of the differences are really subtle. I honestly think that if I wasn't an artist and wasn't trained to look at things closely I would have a very difficult time trying to put a finger on what is different. I am really working on overcoming these things using the "use it or lose it" approach. Time will tell if I've had success. I do find that each week sees improvement. Even over last time where I blogged about things I'm working on, I've made big improvements especially the first three items (napping, leaning on stuff and dog walking) Those are barely issues at all now.
- One thing that keeps surprising me is how easily I am startled (Haha see what I did there? Clever me.), especially in the car. It just feels like things jump out of my peripheral vision. Also I am constantly paying attention to my peripheral vision because I am worried about if it was changed/diminished from surgery (pretty sure it wasn't but that fear remains).
- I am a lot less ticklish for some reason. Traditionally I am one of those highly sensitive people who cringes at side hugs and the like. I actually didn't even notice that I was less ticklish, my husband pointed it out to me the other day. I think I am closer to what normal people are like (ie getting tickled feels ticklish as opposed to touching my arm makes me want to punch you)
- Lights and screens bug me a lot more and a lot sooner. It is hard to describe how they make me feel. Frayed? Like how you feel after listening to a tv that isn't set to a station and is just white noise? Screeching brakes? It isn't so much "feeling burnt out" as opposed to an actual physical limit. Chewing foil might be a good comparison. Too much bright light is like chewing foil. To stay in the bright light is to continue to chew foil. Or you can stop. I am figuring out finally that stopping is far preferable. Hence less blog posts and online stuff.
- I don't think my eyesight was changing due to my age, I think my tumour was causing issues that I do not fully understand. Long story short, before my surgery, reading a medicine bottle was near impossible. 6 pt text impossible. I was starting to rely on reading glasses for fine detail. Yet my eye doctor did tests and determined that I have very sharp vision with glasses/contacts. Since surgery, my eyes have been crazy tuned into fine detail and tiny, tiny text. Effortlessly, with either contacts or glasses in lighting that is less than ideal. I don't understand it, but I'll take it.
- My eyes seem to have a hard time focusing if I am worn out. Not physically focusing... again, this is subtle and I don't understand it, but it seems like a processing issue. I see the information, but my brain doesn't want to deal with all it so it all seems a little hazy. Not all the time, just when I've overdone it for the day or had too many bright lights. This was a lot worse and a lot more noticeable after my seizure but before surgery. I feel like this is improving more each day.
- Being interrupted makes me frustrated. I never used to care and I am terrible for interrupting others. I apologize directly to you if I have interrupted you and it has been frustrating. I get it now. I am learning that I am currently on a very linear plane and to get a thought articulated is a lot of work. When I get interrupted not only do I lose the thought, I have to (like a video game) go back to the last "save point" and start again. If I can remember what the save point was. Ugh. This too is improving so I'm not too worried. I'm sure I'll be back to jumping all over your conversation soon enough.
How appropriate that I lead into the next section of my blog with this particular image. It was originally supposed to lead into a completely different blog post that I never wrote about the big change that I've experienced. I wrote "This little picture has been floating around in my head for days Jan 29 2018" and then I got frustrated. Honestly, I drew this to remind myself I still have an imagination. See more below.
My Biggest Change
I have one glaring difference since I had my seizure and it has taken me a really long time to write about it. Partly because it is really complicated to articulate, partly because I almost feel humiliated to admit it (I said "almost" there, I realize that I cannot control this, but it is massive to admit to this difference due to my line of work. Massive) The biggest struggle I have had is that I am having a very hard time visualizing things. I have recently realized that that part of my brain is there but I have to consciously think about it in order to engage it (and I think this is a new thing in the last few days or so, so I am encouraged)
Before I go further, I want to separate "visualizing" from my "imagination". My imagination is intact. So is my creativity. No problems there (as the above drawing is meant to illustrate, even if it is a simple image, it is not from real life) The thing I am talking about is that internal visualization one has in order to know all the steps required in order to complete a task or to be able to picture what a finished item might look like (or at least a close approximation as any painter will tell you, it never turns out like how you thought it was but the longer you paint, the closer you can achieve that original idea)
The day I was released from the hospital, I was very, very relieved that I could still spatially visualize road routes and maps. I know a little bit about how memory works and I know that if you want to remember people's names and grocery lists, it can really help to tie those things into your spatial memory. I recommend this book, Moonwalking With Einstein if that intrigues you. As an aside, that part of my memory isn't the greatest but I STILL try to memorize my student's names. Names are very important and if you want to make a connection with another human being, try your very best to remember their name. You will not regret that. Well, maybe you would if you tried to remember someone's name by picturing them as a shoe and then accidentally called them "Shoe" when you saw them. That would cause issues.
Something that has really stuck with me is a time before I had my seizure, I remember our family was over at some dear friends of ours house (I'm struggling on where to put the apostrophe on that) playing a drawing game (and if there is one kind of game I love, it's a drawing game) and my friend was saying since she had had chemotherapy, she has had a hard time visualizing what things look like - in her case it was little cartoon drawings of frogs and giraffes. For some reason, at the time, I could not let go of that thought, the idea of not being able to picture something absolutely fascinated and frightened me. Well, I'm speaking from the other side of the coin right now to tell you that it is neither fascinating nor frightening but it does take effort and planning when this affects you.
This is why I titled my blog today "Soaring Above the Trees" because that is my biggest goal right now. I want to figure out how to let my mind take flight again so that I have the big picture perspective that I once had. Instead of being on the ground walking through every idea and conversation in a linear fashion. This goes far deeper than painting pictures or drawing giraffes... this affects a lot of decision making processes.
Pre-seizure my husband would say "where should we go for our dinner date?" and 8 options would spring to mind (I'm gluten free, so I work with those limits, non gluten free people would have 25 choices) . I could visualize simultaneously where each restaurant was in relation to me, the interior, the food options, what they would taste like and the rough cost of the meal. Immediately, I could rule out 5 of those choices based on time of day, location and what I felt like eating. Three choices would remain for my husband and I to decide upon. This is what it is like to soar above the trees.
Post surgery if my husband were to say "where should we go for our dinner date?" I would draw a complete and utter blank. No clue. Add in immediate feelings of being overwhelmed and slightly ashamed at drawing a blank. At that point, I'd have a choice. To avoid looking dumb, just spit out anything that comes to mind regardless or time, location or budget. Usually for me the first thing that comes to mind is the last restaurant I went to. Fancy or food court. Doesn't matter if the goal is to not look dumb. Another choice is to ask him to narrow that down a bit (which once I realized this was a problem, I've been doing) 3 choices seems to be my maximum.
Now, to understand this better I want you to visualize (look, I'm making you work and do the thing I'm having a hard time doing). You are soaring above a park. Below you are three distinct paths that lead to three separate flower gardens. Garden A is snap dragons, Garden B is roses, Garden C is a half dead community garden that suffers from bad management. When you soar above the trees, you can see all three paths branching off from your starting position. As you soar, you can decide which garden suits your current mood and those decisions come quickly. Now, the down side is that you have to make some assumptions in that short time span and you might be disappointed on closer inspection, but overall it is a very efficient way to live. Soaring pretty much rocks and you probably totally take it for granted.
When you are on the ground, you are at that place where all three paths branch out before you. You see three paths winding off in the distance in three directions. You aren't totally sure how long those paths are or what garden is at the end. Someone says what the three gardens are and you are pretty sure two of the choices sound nice. The thing is, when you live on the ground you actually have to walk down each linear path in its' entirety in order to decide how you feel about the garden you arrive at. Walking those paths takes time. Far, far, more time than soaring. However, interestingly enough, you think through more things about each of those options because you spend more time thinking about them. Unless you are interrupted, then you end up, frustrated at the branching point. Living on the ground takes work and feels cumbersome at times. However, this is not thinking less about things or having limited capacity. This is your brain travelling everywhere on foot. It takes a little to get used to and honestly I'm hoping I find a bike soon. As a friend of mine once shared about different cultures that is also applicable here - it is not "wrong" just "different".
I've found that my husband giving me three choices earlier in the day yields better results than three choices given in the car on the way to town while we are already hungry. That is life though, you learn the work around and you make sure you are aware of the risks. I also want to avoid living like that all the time. At some point I will need to step off a cliff and see if I can soar.
This drawing of a flower I find interesting because I'm not approaching this from the ground so to speak. There are implied objects and hints of other things. This was a clue that things are starting to change, even if slightly. I wrote "Things feel like they keep improving. I felt quite down about lots of dreams only a few days ago and yet, the difference a few good days makes cannot be underestimated. I feel like the next few months may be better than originally anticipated. Feb 1 2018
Return to Instructing
Some of you might have noticed that I have an event posted on my main page. I am very excited to see it there, all by itself because it represents something far bigger. The fact that I have a teaching gig means that life goes on. That maybe one day, having brain surgery will be an interesting item of small talk or a way to walk beside someone who is going through a tough time. That maybe what I've experienced the last 6 weeks (Yes, 6 weeks since my seizure. Amazing) might have changed me, refined me and made me stronger but it didn't kill me or keep me down forever. Like I said a million years ago, hope is not to be trifled with. Please note that this gig isn't for another couple months too. Not tomorrow.
So, why do I think I am ready to return to instructing? I'm not totally ready at this very moment, but I'm very, very close. I would not be ready for full time work. Nor am I ready for painting (more on that in a minute). I'll also be limited to instructing occasionally on weekends (when I can be driven) or locally (when it isn't crazy cold and icy and I can travel by foot).
What gives me the confidence is that I don't need to soar in order to teach. In fact, teaching is just walking that linear path and talking someone's ear off while you travel along together. As the teacher, you've been on this path before and are bringing your student along for the first time (they may have been on similar paths but this is new), As the teacher, you point out all the things you've noticed all the other times you traveled that path. The curve of the hill, the rocky slope, the copse of trees and all the special birds and flowers. (of course you never tell them where the Nanking cherry or Saskatoon berry bushes are because you want to hoard them all to yourself and make jam, but then you realize that you like that person so you tell them where those are too.) Linear thinking is an asset in this situation. Not everyone is good at it either.
My husband confirmed I can still do this the past weekend when he asked me to show him how to make his own business cards using the letterpress in my studio. I did pretty good walking through the steps in order and the logic behind everything. It felt so good. So good. On an aside, next time you see my husband, ask him for a business card. Trust me on this.
In fact, something that I would like to try is some informal get togethers in the coming weeks at my house with actual human beings trying some art stuff. Just to shake out the cobwebs on instructing. (there will be no actual cobwebs involved) This is pretty loose in my head at the moment, but as I think about it more I get more excited. Talking to a friend of mine today confirmed that this is definitely a good idea on many levels. Plus I need people telling me about their exciting lives in the outside world. If that grabbed your interest, let me know and I"ll loop you in once I figure it out.
This is another appropriate sketch as I change topics in this never ending blog post. I wrote "My slippers. I'm tired of being home and wearing them all day. I'm feeling restless and a little frustrated. I've been almost totally house bound for 6 weeks now and it feels very stale. My energy levels won't co-operate for longer excursions on foot and I only seem to run errands.
That Thing Where Your Kid is Home From School For a Couple Days and Then That One Magic Day They Start Getting Bored Instead of Sleeping and So You Know it's Time For Them to go Back to School
I'm getting bored but I have limits. I can't be on screens all day, so I need to do stuff. Some of that I've been lightly playing with in my studio. Mostly letterpress and sketchbook. Why? Because both of those are very linear. Letterpress is take an idea do step 1, 2, 3,... 46 = neat thing you made. Sketching is decide what to draw, decide where to start, do your best to get a vague approximation. Add one layer of watercolour if desired.
Painting on the other hand... that is a multi step, multi layer, high soaring process. When I think of painting, I miss it so very much (I'm choked up typing this) but I feel very overwhelmed (please don't message me "just go paint" I'm not ready yet) because when I think of painting, it is very much an on the ground feeling. Plus it is multiple steps that start with "Clean Sta-wet palette", "boil water for new paper for Sta-wet palette", "decide what to paint" *Michelle's brain explodes*, "learn how to use new printer" *Michelle's brain explodes again*, "Put paint on palette" and then I arrive at the start of the path. This is discouraging and exhausting, yet I just articulated those beginning steps which I would not have been able to last week, so I know there is progress. Just slow, on foot progress at the moment.
So back to being bored. I owe a lot of my boredom to the fact that I have diligently kept lists for years and years and years. I track everything. What I eat (clearly I am not on any sort of productive diet, this is just for gluten free stuff), when, where and how far I run, (I can tell you how slow I ran 10 km all the way back about 15 years or so) and I usually write a fresh to do list each day. When I was sick a few years ago, this literally allowed me to work my desk job 2 years longer than I would have otherwise.
This diligence means I am no stranger to dumping things onto a list and then mindlessly checking it, doing a task and moving on to the next thing. I've internalized that skill so much that I had an unwritten (I guess visualized) to do list even in the hospital. (Although that to do list was all about taking painkillers, drinking Coca Cola and walking to the bathroom, the bar is set a little higher these days. Okay, let's face it, not much higher and without the painkillers)
So what does this have to do with lists? Lists keep me on track. All my cognitive functions are here. My memories are intact... I just lack focus and time management (and those are improving). What makes me look like a functioning human right now is that I make lists and I check them constantly to keep moving forward. This is also how I instruct. So I've been making lists of things to do that I actually don't have to do. When I get bored I work on stuff on the list. Today's list includes such gems as "blog", "thank yous", "painting photo" and "sketchbook" (notice the lack of household chores, somehow I never get bored enough to put that down unless we are getting low on socks or public health and safety is called into question) I also made a note about "art group" after talking with my friend. The fact that I've crossed off two on today's list already means that slowly I am climbing up to higher places. Boredom will drive me to good health.
To read the whole story of my Meningioma click here.
I'm starting to feel restless with just drawing. I might go and tidy up my studio tomorrow. It's been around a month since I spent any significant time in there. My heart is feeling the absence of that space. I wrote "I've noticed this pillow on the chair a lot this week. My dad sits with the pillow for his back. I've been looking at the pattern more because of it's migration from the couch. I seem to be better at constructing images with hard lines and angles today." I also notice my writing is improving, it is closer to my usual scrawl than it was last week. Less spelling errors and repeated words too.
I've been home from the hospital for a week now. It's been an interesting week for me recovery wise. Every day has held a new bit of progress as well as a surprise or two on things that still affect me in subtle ways. At first I was going to write a post on all this little things that keep coming up. However, after reflecting about it, I think I will instead turn that on it's head and write a post of all the things that I am looking forward to improving on. Attitude is everything.
Some of these things sound pretty minor but will change my day dramatically once I master them. Some of these things are also going to be indicators that I am ready to get back to work with instructing and studio work. I find writing little goals like this gives me something to aim for day to day.
Eliminating Mandatory Nap Time
Don't get me wrong, I love a good nap. What I don't love is this newly adopted narcolepsy that came with the surgery. I nap minimum one hour a day, it is not unusual to nap multiple times for up to 4 hours. These are groggy deep naps where I wake up slowly and refreshment washes ashore for about a half an hour before I feel ready to get up. I have zero problem falling asleep at bedtime. I feel like a cranky, exhausted and emotional toddler if nap time is delayed. It won't be long before I get caught at the grocery store having a tantrum.
Being Able to Stand Around Without Leaning on Stuff
My balance is fine, I'm physically fit enough to stand unassisted and I don't get light headed. For some reason standing and talking to someone or waiting in a long line is excruciating. It wipes me out and this mystifies me. I have improved quite a bit in the sense that last week, standing for a few minutes felt impossible. This week I'm okay if I'm leaning on a counter or door frame. Stick me in the middle of a field and I would start getting worried.
Walking My Dog
I have a beautiful husky/greyhound cross. Gentle, kind and even tempered UNTIL you stick a leash on her. Normally I start every morning with a half hour walking her through the trees in search of those elusive local deer she can always smell. This week it is icy on our local paths and she just pulls too hard when she is excited. On Monday my dad and I started going on my usual route but he took the leash so I could focus on not slipping on the slick spots. Next Monday, I will be on my own. Judging from my strength returning each day, I hope that I can handle her on my own. Or all the ice melts. Or both.
Walking is getting old. I'm frustrated that I can't just spring forward into a steady gait. Yet the idea of running is terrifying (and I'm not going to push this until I see the doctor for follow up because I am aware there are risks with impact sports) I feel like if I run, my incision will open up and my brain might fall out. Or my head will fall off. Something rational like that. Today I rushed instinctively to get to a ringing phone and my body said HECK NO, DO NOT DO THAT. So, I'm clearly not rushing this one.
Maintaining My Focus
To be totally honest, I start to fade pretty quickly during involved conversations, long articles, and nagging my kids. I have found myself sheepishly saying "I'm sorry, I just realized I was totally not listening to the last part - what was it you were telling me?" I just start to glaze over and withdraw from the moment. This is particularly noticeable when it is too loud or late in the day. This is not normal for me and I don't notice at all that it is starting to happen until something occurs and I think "I have no idea what they are talking about"
Normally I am slow and steady. In pretty much everything I do, I am very intuitive with saving a little extra for the end and finishing well. Running, making art, and instructing classes. Lately I seem to be overestimating how much energy I'll have and underestimating how long things will take. Which ties into my next goal....
Keeping Track of Time
Being married to a wonderful man of German/Mennonite heritage means I am used to watching the clock and being ready for everything. Not this week. Hours and hours just slip away. Usual things that indicate the passage of time like being hungry, having appointments or working are not really present right now so I find I am constantly surprised at how late it suddenly got. Dinner time and bed time get me every single day. BLAMMO.
The last three points are very intertwined. I might look like I'm totally back to normal but those little struggles make the days just disappear. I know clearly what days all my appointments are and what the date is but I have a hard time stringing all those things together into something that feels like a normal routine or structure. If I have something booked for next Tuesday and I know today is Thursday that feels like it could be weeks away in my head and I have no idea what to do with the time in between. Chores and visits and things that aren't fixed firmly just seem to appear out of nowhere.
In other news, my staples are all loose and jangle around. I can't stop fiddling with them and thinking about them. Everything is healing up nice though. I get the staples out on Monday. I can hardly wait.
To read the whole story of my Meningioma click here.
Today's floral sketch. My house is overrun with a riot of delightful scents and colours this week. Very, very unusual for January in Alberta. While I'm not a "say it with flowers" girl in general, this has been quite enjoyable. I wrote " I've been too busy to write or draw. My dad is in town and I've spent the past few days being alive. I realized I've pretty much been housebound for almost a month. Now that I'm feeling okay, I just want to move and do things. Not sit and blog or draw"
One week ago I was waking up with a nurse feeding me ice chips. My throat was burning from intubation and I was hooked up to all sorts of beeping machines and monitors. Today, my dad took me to Costco, I will be completely honest, I did NOT expect I would be up for a Costco trip one week post surgery. Yet, here I am and my pantry is filled.
This recovery is nothing short of miraculous (whether you believe in miracles or not). When I put my hair down over my incision, you would have no clue that I had major surgery last week. As far as I can tell, I read as regular old Michelle to the average passer by. I don't think this is one of those situations where people talk to me for a bit and then lean over to their spouse once I've left and say "you know, after that surgery, she just hasn't been her old self". If I was annoying to you before, I'm sure I'll pick up right where I left off next time I see you. No Frankenstein shuffle, no vacant stares as far as I can discern. Either that or everyone has been really, really nice about letting me believe I'm doing good.
This is my paradox.. Last week I did have major surgery. This past Sunday was the first time I left house.since coming home from the hospital. In order to get moving and aid my recovery, I went walking at the track on Monday. It is a big piece of humble pie one needs to eat knowing that only a few weeks earlier, you could effortlessly run 5 km on the same track. I walked around 20 minutes. I kept getting lapped by the senior citizen walking groups who passed me swinging arms with the 1 lb weights strapped to their wrists. At the same time there was one of those boot camp classes in full swing full of fit young mothers. I watched them as I circled remembering all those kinds of classes I've done before, knowing I would literally have a stroke if I did one at the moment. Yet, I was there. Not in the hospital, not at home. I'll take slowest over what I've had for the past few weeks.
Excursions feel so great right now. My mind is clear and I've been cooped up. Excursions also equal a big nap afterwards. It is so funny how I feel totally fine while I'm out but I come home and I'm completely ready to hit the pillow. My dad has been visiting to help and we shifted our focus from him helping around the house to helping me push my limits. I won't be driving for months so we've used our time during the day to get set up around here so I know I can start easing back into my regular routine. We've reduced the level of outside help dramatically too - that is a good problem to have. It's been reassuring to have stuff in place should our family need it, and we are thankful that it looks like we won't need it all either.
Post Surgery Observations
- My scalp is waking up and it is crazy. All tingly and strange. My husband has to put ointment on my incision twice a day and its only been since the weekend that I can actually tell he is touching my skin. My shaved head is starting to grow in and it feels so funny. I just run my fingers up and down the edge of the shave line for entertainment. Staples are so weird to encounter too (I avoid them as much as possible because the idea of them kind of grosses me out). Everything is healing up all clean and fresh though.
- Post surgery fatigue will drop you if you aren't paying attention. The day I walked the track I was going slow, but was totally in command of how I felt. I knew I was done when I rounded a corner and the next nearest chair felt like a thousand miles away. Again, I had a good nap when I got home.
- There are a million post surgery blog posts about how awful and painful my type of recovery is. This post I'm writing is one of the few happy ones out there on the internet. I can honestly say, my pre-surgery symptoms were much worse. I do get a little head pain now but not much. I'm being careful and my head looks gnarly but things are quickly improving.
- I am finding subtle limitations. Last night I discovered that at the moment, I cannot track two conversations going on at once. I literally cannot follow either conversation at all. Not sure if that extends to things like the radio or tv going while people are talking. The amount of selection at Costco was a bit much after a while today. I told my dad that before my surgery, if I didn't have a list, I would go into the store and be absolutely blank on what I needed. Shopping was super overwhelming. Today, I didn't have a list and I stuck to my budget exactly. Impressive for Costco on a regular day.
- Drawing is a little unfocused on where to start and finding the order that is most efficient for building a picture. I am seeing things better than I was pre surgery, so that encourages me. I just need to sit still long enough to actually draw. It does help with the processing part, so I know I will return soon enough.
To read the whole story of my Meningioma click here.
This is my first post operation sketch. I made it this morning. I had good intentions yesterday but hours just seem to stream away right now and then I am too tired. I've received some very beautiful bouquets and that has been like a balm to my senses. I look forward to drawing them. Structure seems kind of hard right now. I wrote "Tiger Lilies are one of my secret most favorite flowers. I know very little about flowers but I think that's where my love for tiger lilies comes from. It is the Saskatchewan provincial flower (although wiki tells me it is actually a Western Red Lily that represents my home province) I remember learning about this at school at a very young age. Somehow that info combined with a loose sense of patriotism made me feel like an expert. Plus it is beautiful. Bold and bright and sculptural" I'll be honest. This entry was interrupted with background noise and my concentration is shot. My spelling is not perfect and I still have a few repeated words written down. I feel like its all rambling.
It feels strange to be posting the update that I am. All the expectations about brain surgery that I had have been turned into something else. Easier and far more difficult that I really understood before crossing that threshold. It's been a long week so I'm giving myself permission to just put some semi coherent thoughts down to mark the moment. Maybe I can look back on this post in a few years and nod my head sagely and be happy that this time has passed. Then crack a stupid joke to get over the awkward pause. That would very much be my style.
I'm going to use the handy "in no order point form" system yet again. It feels separate and orderly but seems to allow for stuff to be barely interconnected.
- One of my biggest fears coming through this operation was being mentally and physically incapacitated (temporarily or long term) this has not happened, for which I am very, very thankful. Instead, I actually feel like there has been a reset button pressed in my brain. Like the neurosurgeon just pressed the off button for 5 seconds and rebooted me to that moment before my seizure hit. It is weird to me that I feel this much more normal post surgery. Like that shouldn't happen for some reason. I also don't think I am merely imagining my faculties are back to normal, I've asked my husband and he has confirmed that this seems to be the case.
- Those weeks from seizure to surgery were a lot more difficult than I realized. Canadian friends will know what I'm talking about when I mention that commercial with the car driving at night in the city and the empty beer glasses keep getting placed in front of the camera lens to make every thing blurry. That was me for around three weeks. Writing funny blog posts literally consumed my thoughts all day so I could sound loose and informal. They were anything but. It was like writing words and then taking a very fine file and shaving away at how words fit together or looked until it seemed right. Laborious. Time consuming. A welcome distraction.
- I have a few things that are really important to my identity and all those things were seriously tested in the past few weeks. I want to be a genuinely nice person (I'm not perfect) and I was super worried that medications, surgery or complications would bring out bad traits or that I would say unkind things to people I love. My temper was short (and I seem to still get frustrated faster right now). Thankfully, I think I have navigated through those dangerous waters. If I said anything really bad, the nurses were too kind to tell me.
- I did not lose my sense of direction. Another huge worry for me. I have very very strong spatial awareness. It gives me comfort to know what little drawer the little thing I am looking for lives in. When I can't sleep at night, I close my eyes and mentally travel through streets of places I love and that helps me settle down. I usually always know where north is. I still know where north is and the best route to travel to get you through rush hour.
- The weird reading stuff I experienced after the seizure is gone. Just gone. Like an exotic bird that came to rest in my psyche for a few weeks, it came, made it's presence known, opened my eyes to a different way of living and then up and left. Same goes for my sweet tooth and enhanced sense of smell.
- I can think, I'm pretty sure I can draw and do the stuff I did before I had the seizure, and I am starting to want to. This will change things though. I am a slow processor and the blog part is only a tiny part of me being able to wrap my head around this situation. Today I was overwhelmed with a lot of what we've experienced the past few weeks and I needed to express it through drawing and writing.
- Attending a surgery where you are the patient is very similar to attending a party that you don't remember. You hope pictures don't show up on Facebook. Your head hurts. Weird bruises show up for days later. Someone washes and braids your hair before putting a 6" incision into the back of your head. Strangest party I've been to.
- Don't let the post operation photos I posted of my smiling mug fool you. I look really weird right now. 1/3 of my hair is shaved off (and will eventually cover my massive horse shoe shaped scar). My face is weird and puffy from sleeping semi upright and taking steroids for a few days. The post surgery human body is slightly terrifying version of yourself to get to know. Plus you have to get to know it at a time that you would really rather just have a nap.
- Naps are uncomfortable. Bedtime is uncomfortable. Walking is tiring. Talking is tiring. Sitting is tiring. Recovery is demanding and yet, my brain is reset. This frustrates me.
Apologies for just rambling. This is what post surgery looks like for me today. Overall I'm feeling optimistic and know things will improve. I figured it might be of interest to know what a weird experience this is.
One Interesting Thing I Learned:
So, I wasn't sure how much of pre and post surgery I would remember. I remember the anesthesiologist putting the mask on my face and telling me I wouldn't fall asleep for at least a minute. Then nothing. Then I remember a nurse talking to me and asking the usual questions they ask you in the hospital (I'm very good at giving the date).
In the background was an announcement that was repeating over and over, but in the Recovery ward, everyone was too busy with the patients. So then an alarm started going off for a "code purple". All the nurses started scrambling around to figure out what that meant and I piped up and told my nurse that the announcement said it was just a test. They all relaxed.
Then they looked up what code purple was. If you are ever at Foothills Hospital and you hear there is a "code purple" it means its a hostage situation. Or a simulated one. Pay attention. *The more you know*
I came home on Thursday (surgery was Tuesday) the euphoria of good meds and a happy outcome have turned into the reality of needing lots of down time. We are good for meals and cleaning. I have rides and appointments covered for the time being (and a generous list of names to call on for help)
I've read all your messages, I've seen all the kindnesses you have shown my family and I deeply appreciate it. I have also given up trying to go through the back log of messages that stacked up this week. So, this is my official thank you. I love you guys.
My incision has around 40 staples in it, those come out in little over a week. I still don't have any idea of what my long term recovery looks like or what I will need. All the basics are doing great though (walking, talking, cracking jokes). I plan to keep blogging while I figure it out.
To read the whole story of my Meningioma click here.
This is an update by Michelle's husband so this will be neither funny nor quirky. Michelle gets full permission to overwrite this whole post with a much more thoughtful one once she is fully functional. In fact, having just got stuck trying write a third sentence I've decided to do the rest of this in bullet points. Like seriously Michelle you will need to delete this post and re-do it properly.
To read the whole story of Michelle's Meningioma click here.
I deeply dislike this sketch. For a number of reasons. Firstly, it is an ugly chair in the waiting room of the MRI area in the windowless basement of Foothills. Dreary doesn't really do it justice. The staff in this area is sweet and kind. So that helps. I wrote "Interesting to note - it's ard to know where to start. I find the big picture doesn't come easily. I had a bit of work to line up all the ways the chair intersected properly. Not great. Not terrible Jan 12 2018"
A little bit of rambling about the drawing stuff before I get to my main topic. I feel like I don't quite know how to assess the image as a whole. I can see it, but it takes a real effort to account for all the variables and make a decision on what would be the best place to start. Apparently, this was far more intuitive pre-seizure and it took me a while to be able to articulate this. My written note on the above picture was a bit of a scratch to the surface.
On another note, I realize my photos are kind of blurry. Unprofessional. I apologize. A lot of my digital navigation is by feel right now and not by knowledge. My phone is being funny about giving me high quality pictures and I don't have the capacity to fiddle around for a solution. So bear with me in the meantime. At some point, maybe I'll redo these shots, but truth be had, I probably won't. They sort of suit how I feel right now. Blurry.
After the first sketch, I felt strongly that I needed to take that information I'd gleaned and see if I could find a work around. By going into the drawing knowing I had a disadvantage there, it felt easier to stop and gather information. I guess because I knew I wouldn't do it automatically. Teaching helps, because I go through what I've told students before to solve their problems and it worked for me. This drawing feels more successful. I wrote " At the MRI place in the basement of Foothills. This drawing was better because I made sure to pay attention to the big picture part. I forgot about drawing a border (which I prefer) Can't win. Jan 12 2018"
I'll be honest. I'm in such a weird place today. In less than 24 hours I'll be whisked away on a day I'll probably not remember much from but will be one of the most important days of my life. It's a bit overwhelming.
One of the questions that comes up is usually worded like this "how do you like your Neurosurgeon?" Which is code for "Do you think they will do a good job? That's kind of a big deal" I have met my neurosurgeon exactly once and really know very little about her. Yet, my husband and I left our consultation last week feeling really good that she will be the one to remove this Meningioma.
A few thoughts that made the decision easier. One is that we didn't get the chance to choose. Since I needed the surgery fairly promptly, they found me a surgeon who could fit me into their schedule. The other is knowing that I have no idea what qualifies someone to be a neurosurgeon but Foothills does. Since Foothills is a pretty decent sized hospital in a decent sized city - my chances are good. We realized that people who rate doctors on those medical sites are usually rating them based on bedside manner, so we didn't really hold too much weight (good or bad) to that sort of thing as well - I figure if there was some sort of awful outcome it would be noted but the rest would be based on how long the doctor listened etc. Stuff I would find out for myself.
Things That Made Me Trust My Neurosurgeon:
- She works primarily as a pediatric Neurosurgeon. I have a LOT of respect for that. I also think in it's weird way, that is a good fit for someone such as myself for a multitude of reasons. (insert jokes about juvenile sense of humour here) The fact that parents trust this doctor with the life of their child speaks volumes to me. I've been a parent with a kid going through surgery. That consent form feels a heck of a lot different than one for your grown up self.
- She works primarily as a pediatric Neurosurgeon. I want to stress this again. You can tell a lot about a person's character by the way they speak to and speak of children. She brought up a few examples of some situations her young patients have faced and I noticed three things: she was VERY protective of their privacy, she spoke about them VERY respectfully and you could tell there was a genuine kindness towards her young charges.
- She recommended that we name the tumor. She laughed when we said we had already done that. She then spent the rest of the meeting referring to Sally by her Christian name. (the theology of that term seems a little odd, but I don't have a way around it and I think it's amusing that my tumor has a Christian name. I know I could use the term "given name" but I refuse to)
- When she said "you won't know this about this about me, but I'm primarily a pediatric Neurosurgeon" I interrupted and laughed and said "yes I did, I absolutely stalked your RateMD page" and her response was to chuckle about that.
- When we asked her if she hears the same brain tumor jokes over and over again, she nodded and said "yes, every single day" and then laughed.
- When we asked if people were allowed to keep the tumor she said "no". and laughed. This made me trust her because very clearly, if anyone in this arrangement needs to be the grown mature person, it should be her.
- When MY HUSBAND asked if we could have a photo of the tumor, she laughed again and said "absolutely". (again, there are advantages to having a doctor who is used to children. None of these things phased her in the least.) While she was very doctor like and efficient, she very clearly had a sense of mirth around her.
- When I got a little emotional, she had TWO boxes of Kleenex in her office. For anyone who deals with people in emotional situations, you will recognize that as a very pro move.
- When she learned I was an artist, she asked what type. I told her about the painting and printmaking etc and she said "I pulled a print once!" and then proceeded to tell me of a special moment she had on a trip. It just so happens that the place she went to is one that I have long wanted to visit.
- She was good at explaining ALL the steps involved, all the possible risks. Like a doctor should. When we asked about recovery etc. Her advice was "all of this is based on ideal outcomes, at this point that is where we are going to live. Yes, there could be complications, but we are not going to live by worst case scenario" You have no idea how much that advice has stuck with me since then. About all sorts of non-surgery related stuff as well.
I told her to have an EXTRA relaxing weekend. I hope she took my advice.
I go into surgery tomorrow. I'm mostly ready but getting loose ends tied up and things packed is eating up my day. I see all your well wishes and I quite possibly will lose track of getting a response to you in the coming days. Just know your support during these difficult few weeks has lifted me up beyond measure. My next blog post will likely be an update from my husband. He might not format it the same way, he might not post it to social media, so if you are looking for an update in the next few days and haven't seen one, come back to my blog.
To my family and friends especially - just know how much I love and appreciate each of you. I'm looking forward to beginning the next chapter of this experiment.
To read the whole story of my Meningioma click here.
sOn Friday, I attended the wrap up event for the Bud's of Bud's Northern Reflections Painted Window Exhibition. It was a great night reconnecting with the organization's team, the other artists as well as my animation partner, Alyssa Koski.
During the evening they awarded three prizes, People's Choice, Celebrity Choice and the Juried Prize. Alyssa and I were thrilled when they announced our name for the Jury's pick.
I'll be honest, since completing this piece my life has had quite a few changes and developments and 2018 has started out kind of rough. To have a night out and to take home the big prize was a great way to end my week. Thank you, Bud's of Bud's, thank you Jury and most of all, thank you Alyssa - you were an amazing partner to work with. Your animation took this piece to a whole other level and it was a treat to collaborate with you.
This is a weird landscape our family is walking in right now - it is super humbling to receive so many well wishes and offers of help. When I say the word "humbling" I want to clarify a bit what I mean by that, which is REALLY hard to explain with how my brain currently works. I think I can give you a few sentences with similar wording and hopefully you will get the gist of what I am trying to get at. If you don't, you will at least learn that brain tumors make you terrible at at explaining things.
Friends, below are the types of conversations my husband and I have had all week. I hope you see what your help has done to lift us up. I hope you see YOU in these conversations because, well, there you are. On the flip side, any "negative" examples are not true of our situation, we have been absolutely, wonderfully taken care of, I put them in merely for illustration (besides, Martha Stewart would never make me a casserole).
What I mean by "humbled"
"You have no idea how much I needed that text. It just made my day"
"Holy crow. I NEVER thought of offering that kind of help. That is absolutely genius. We need to remember that."
"I hope I can do that for our kids/friends/parents/coworkers one day. Wow. Just wow.
"Despite ________ he/she came through so above and beyond, I did NOT expect that. That is so sweet, I want to cry" (then Michelle proceeds to ugly cry for a few minutes while Phil looks at her awkwardly and then they proceed to get back to the spreadsheet)
What I don't mean:
"That pasta salad made me change all my bad habits and be better at budgeting"
"I can't wait till _______ goes through a time of need, then I can show her how to really vacuum a carpet"
"Thoughts and prayers" #blessed (nothing against actual thoughts and prayers or blessings, but I do want to make the point that I am not using the word "humble" like it's dressing on some sort of b.s. word salad. I actually mean it.
Also, feeling humbled and humiliated are two very different things. It is highly unlikely Geraldine is going to take the time to make you a casserole in order to make you feel humiliated. You might choose to feel that way, but it was most likely not her intent. Now, if Martha Stewart was making you that duck pate casserole with handmade macaroni and Gruyere or that casserole is actually just a Pyrex dish full of flour, I would of course question the motives, but like I said, those types are in the minority, and its usually already easy to dislike them a little already anyways, so you won't really be surprised.
I also realize that helping people is FILLED with landmines. I can think of a bunch of situations off the top of my head (either via the news with the latest gofundme scam or that friend from school with the martyr complex) so I'd like to offer some tips on how to give and receive well (knowing full well that I will screw each these up personally at some point)
- Be really clear with what the needs are. I had a friend who moved, I offered to bring a meal and she said "if you really want to help, could you help me paint my kitchen? I don't really need a meal." I had the choice then to help in that way or politely decline. Simple. I did help her her paint, and true story, I'm TERRIBLE at painting walls and yet, we are still friends.
- Set boundaries. For those who are asking for help, if you are not comfortable with people being in your home or eating food you don't cook, just politely say "no thanks" to whatever is offered and restate what kind of help you do need. For those of you who offer to help and Thursday is a crazy day, say you are unavailable Thursday but available ______ (insert very specific time if needed here) Often, it is super helpful to look at the options and know who is unavailable right off the top so you don't even have to text them to inquire. You just move right on to the next name on the list.
- Realize everyone does things differently. If you ask for help and your friend folds towels one way (or doesn't fold them at all) and they come to do your laundry... you have two obvious good choices you can make. a) Thank them for helping and give them instructions before they start OR b) Thank them and let them fold the towels however they choose to fold them. Don't refold them after they leave. Don't tell everyone in your social circle that they don't fold towels correctly, Don't passive aggressively post You Tube tutorials to your Facebook wall that detail the intricacies of the health and safety benefits of correctly folded towels.
If you are providing help, and someone gives you some loose guidelines on folding towels, realize that this is not a reflection on your intellectual capabilities. Sometimes it is because your friend is super Type A (and you already knew that, didn't you?) OR there is some reason why they are asking for something to be done specifically. Maybe the cupboard is long and narrow and the towels only fit that way. Maybe they have a child with special needs. Maybe they like origami. Just go with it. Also do not go home and post You Tube tutorials about your method of towel folding in response to theirs. No one wins this game.
*Please note, we will not be asking anyone to fold towels. Why start now?
- Don't ask for more than you need don't give more than you can. New born babies and deck renovations are two different things. Don't lump them together. If don't have room to take a bunch of frozen meals, don't accept that offer. Don't go into debt to donate cash to that gofundme that touched your heart. My kids don't have brain tumors, they can clean their own rooms. *glares at kids* (I kid, I kid,)
Further to that idea, see what you can take care of first on your own before asking for help. People shouldn't have to dig you out of every mess because you refuse to change. Most people will stop helping you pretty quick anyways. One thing that really helped us navigate this before we even go started is the fact that we have a monthly budget and we know EXACTLY how much comes in and mostly how it goes out. We are not perfect, but we are frugal by necessity. We looked at our budget, we trimmed some fat, we renegotiated some of our bills, we put some plans on pause for a set time frame, we discussed our non-negotiable needs, we saw our short fall THEN we let people know how we could use help.
This website, The Simple Dollar, is invaluable to anyone who is intrigued by ideas of starting a budget, being frugal or renegotiating bills. In times like this, you should be prepared to make cuts and not "profit" from the generosity.
- Set some targets, based on what you know at the moment Be prepared to adjust those targets as needed. If things go better than expected, awesome. Adjust that target. If things go worse than expect, that is hard. Adjust! Adjust! Ask for more or less help as the crisis unfolds. Keep people posted on how you are doing. They are busy and they are assuming you are getting better because you aren't asking for more help. Make each other's job easier in this way - ask how your friend is doing, tell your friend how you are doing.
Base those targets on the idea that things take time, but look at the average outcome, not the worst case scenario. If it's medical related, ask your doctor. Our family has a few targets we based our ask on: 6 weeks including hospitalization where I will feel like I have been hit by a bus and/or heavily medicated. 6 months no driving. 6 months probably to regain a sense of normalcy. Notice I did not say "to get back to normal" that idea is false. There is no one single time in anyone's life where everything is perfect and normal. Especially if you are a runner. You will always be nursing some injury, or kind of broke or ate too much. Always. Its part of life. Experiences change you. Crisis will really change you. Make your goal healing and independence and you will be far happier in 6 months than trying to "get back to normal"- that doesn't exist.
- The point is to help, not fix or be fixed Give and receive based on need, not on merit. Really, at the end of the day no one fully deserves any of this. We all screw up, we all have SUPER irritating habits, there will be some political point that neither giver or receiver will see eye to eye on. That's okay.
Don't project the stuff you should be seeing a counselor about onto the situation. View giving and receiving as a respectful, consensual partnership and you will both get through it with your relationship intact
- Crisis is exhausting My mom likes to say "keep it simple" and "like things together" both of those are great pieces of wisdom. (The "like things together" thing isn't relevant to this discussion but probably a factor in me naming my Label Maker "My Precious")
Receivers: Copy and paste those texts, Givers: don't expect people to respond with lengthy in depth personal answers (or if they do answer you in a lengthy manner, chalk it up to a good day and enjoy it). Receivers: tell people when you are not up for a visit, Givers keep your visit short. You get the point. I feel like there is a speech for a wedding reception somewhere in here...
Pain and fear make people weird. Meds make them weirder. Also it makes them forgetful. Or makes complicated instructions hard to read. Repeat stuff, say thank you all over the place and always remember, just because you had an etiquette class in high school that taught you that it is proper form to send a thank you card by x amount of time, not everyone went to your high school. So try to extend grace and accept the verbal or implied thanks. If your reaction to something in your giving/receiving partnership is to be offended, try to figure out why, check your own motives and either voice your concern, chose to not participate or let the issue drop. Life is hard sometimes and it is times like this where people just show you how amazing they are. It gives me hope for the future.
UGH. I typed a bunch of stuff and closed the browser window without saving. Surgery is going ahead on Tuesday Jan 16th. Expected hospital stay is around 3 days if all goes as planned. While I don't really care if my hair is long or short, I get to keep my hair rather thank look like I'm a forty something revisiting her punk phase on purpose, that is always awkward. So, for that, I am glad. Sally measures in at a bountiful 4.5 cms and at the moment is happy and healthy and kicking the part of my brain that takes care of language, reading and writing. No surprise there. An eviction notice has been served.
A Meal Train email has been sent out. If you didn't get it or want it again, message via text, email or FB Messenger. I don't to post the link all over the place.
Thank you all for everything and then thank you again in case I forgot the first time.
To read the whole story of my Meningioma click here.
After thinking about how to do these journal blogs, I'll probably just post there pages with a caption that is directly related and then write about whatever other non journal crazy stuff in the main body. I'll probably write stuff in the sketchbook on the left page and draw on the right. If I include that text, I'll just put it in quotes. I chose this bowl because it surprised me when I took it out of the stack and I saw the pattern on the interior. Like me, it has lots going on in the inside right now. I wrote "I am somewhat relieved that the seizure did not seem to affect my drawing abilities. I've never had a time where I've been unsure of whether or not I still possessed that ability. I find the handwriting part hard because there is no auto correct to rely on. Jan 10 2018" I spent around 5 minutes on this loose sketch. Baby Steps.
It is inevitable in times like this (discovering a brain tumor) that you reflect on your past choices and wonder if there was anything you did that may have caused weird things to start growing in your skull. Now, I have my degree in Googling, and apparently meningiomas can be (but isn't always) linked to radiation exposure. So, between not living near Hiroshima in 1940's and that stretch of 6 years where I was too scared to go to the dentist due to some over packed fillings, my brain has wandered a little further afield to find Sally's Origin Story. (BTW to my friends named Sally, my tumor's name was suggested by my niece. This in no way has anything to do with you. My niece on the other hand is probably harboring a really sick grudge.)
I debated about doing a "Top Ten" format and have avoided that trap. Point form is better in my current head space because I will end up with something like 13 points and then I'll have to change this to a "Top Twenty" list and spend the rest of the morning thinking of 8 not as funny points and then have a headache. Win win. (Edited to add that I reread this and realized that 8 + 13 do not equal 20. I decided to leave it in here for you to wonder if I made a mistake or if I am being profound because I would then have to make it a "Top Thirty" list and the cycle would continue and somehow that was a metaphor for life)
So, in no particular order because I've been coming up with these for the last 12 hours and then promptly forgetting them...
Things That Probably Gave Me a Brain Tumor:
- That time when I was around 5 years old where me and my friend Aaron decided to pretend we were cats and to be more authentic we snuck into the kitchen and started to eat Sammy's dry food straight from the dish while meowing loudly. Then we continued to eat it not because we were being authentic but because it actually wasn't that bad.
- When I was at Langley Fine Arts School, the visual art majors had to paint sets for the upcoming production of the Wizard of Oz. We were left alone in the gym with huge buckets of artist grade acrylic paint. Naturally, we decided it would be HILARIOUS to coat our arms and faces with thick globs of Cadmium laden paint and walk around the school like a bunch of weirdos. When the teacher discovered this, she lost it and said a bunch of stuff about health and paint absorption through skin that remained dormant in my psyche till last week.
- Wearing thick layers of pancake foundation in the lightest shade available, trying on clothes at the Value Village on Hastings St. or listening to The Cure/Sisters of Mercy/The Smiths on endless repeat during my Goth phase. Or all of the above mixed into some toxic depressing tumor causing stew.
- When I ran my only marathon in Vancouver and hit my wall at mile 16 and there was that lady who was walking a little behind me who was wearing headphones started swinging her hips and loudly singling along to her folk music that I couldn't hear and so I started running again only because I needed to get away from her, probably at a great personal health toll.
- In my late teens when I worked at the Body Shop and my coworkers and I secretly smoked cigarettes on our breaks and then came back on shift and coated ourselves in a thick layer of Dewberry Perfume because our manager didn't think that we were projecting a healthy Body Shop image.
- That time my dad took my sister and I to the Science Centre and we got to touch a python then on the way home my dad let us pick out our favorite flavour of yogurt at Safeway. At home, as I started to eat my bowl of yogurt, my sister casually informed me that people who forget to wash their hands after touching a snake and then eat Black Cherry Yogurt would turn into a python during the next full moon. That little seed of fear that was planted probably equals a brain tumor now.
- In Grade 10 I was trying to convince my mom that I was too sick to go to school so I tried warming up the glass thermometer on the stove and it broke and mercury leaked all over the element and I did a terrible job cleaning it up. (Oh, by the way my family may want to book a cautionary CT scan once they read this, just saying)
- Cleaning washrooms at the New Westminster Starbucks. I'm sure that gave me some sort of permanent disease or disability. The fragrance of their mop water mixture of industrial cleaner plus the inescapable realities of public washrooms of certain neighborhoods in certain towns is permanently scarred into my brain. (I confess I struggled with how to word this one kindly)
- All the times I secretly tasted Scratch 'n' Sniff stickers and Mr. Sketch markers to check if they were flavoured as well. Possibly that roll on lip gloss I got in my stocking that year that really tasted good so I secretly just kept rolling in on my lips and licking it off and then reapplying it till it was gone.
- Reading most of the Sweet Valley High novels and/or the fact that I know all the lyrics to Salt-N-Pepa's "Push It" album. Throw in all the acquired knowledge of the inter connectivity between spin off sitcoms related to the Facts of Life as well as Three's Company. Those items alone left to fester in my cranium could easily have fused into some sort of 80's pop culture spawned tumor.
Whoa. I think that is actually just 10. I'm going to stop while I'm ahead.
Real Life Update
I have decided that "Multitasking" is just fancy speak for people who can't concentrate on anything very long. Prior to my seizure, I could focus for long stretches at a time on very intensive stuff until I finished. No longer for the moment. I work on many many things a day and get very few of them completed because I lose track of what I came into that room for. I feel okay today though, so I'm happy that I'm at least appearing productive. Having no concrete long range plans and not striving towards goals right now has left me fidgety and bored. Blogging has been useful because instead of thinking about all the things I could be worried about, I'm thinking about dumb jokes.
To read the whole story of my Meningioma click here.
First page of this journal. My handwriting looks like the messy side of normal. I've finally gotten up, gone into the studio and brought the sketchbook to my chair. To be completely honest, I have not looked forward to this at all. I'm not in the mood. Oh and this picture is grainy and I meant to retake it and I've forgotten so many times, I'm just leaving it.
I have had so many sweet and heartfelt well wishes in the past week since I went public about my brain tumor (I am Canadian, I am aware that the correct spelling is "tumour" I have given up on the American-centric auto correct and decided it is too much effort to change it every single time on every single platform I use). One thing I really want to talk about though is the idea that I'm particularly brave or inspirational about all this. I'm not. I'm just good at explaining things and I have a particular need to make sense of all this to myself and blogging seems to work with my current mood as an outlet. That's it. Not brave - just trying to make sense of this. I am processing.
Now, I can picture the "oh, but that isn't true!" types protesting as well as people who have seen me lose my temper in the last week nodding their heads vigorously saying "uh huh, she is no saint!" (I am looking at you, my family,) The fact of the matter is, presented with the same situation, the overwhelming majority of you would go through this in a very similar yet completely different way. Hospitals are FILLED with people currently having the worst week of their life. Plus people having the best week of their life. As well as people who THINK they are having the worst week of their life but are really just being whiners, I'm sure if you ask a nurse friend about the last category they will have some very funny stories to share.
Honestly, if you REALLY want to split hairs on this (and I will fight you on this, I'm in a punchy mood today) the brave and inspirational people are the ones who decide to devote their life to picking up the pieces for people who are currently having a really bad week and whose lives are currently very broken and messy (in either a physical or emotional sense). The people who instead of spending their life drawing pictures and blogging decided to put their nose to the grindstone and learn a tangible skill, often at great personal and financial expense. Skills that the merits don't depend on what jury you got but actually have rigorous licensing processes that take years to obtain.
Seriously, think about this. It blows my mind that people spend YEARS of their lives doing math and science related schooling (which was never my favorite although I love watching NOVA or leafing through a National Geographic in a waiting room) in order to figure out how to not only to see what is literally going on in someone's head but to fix it. Not to mention keep them alive afterwards. Seriously. There are people who are totally prepared to sign up to be a first responder. Risk their life? No problem. Some of these people even do it as a volunteer. (As an aside, to the firefighter who irritated me so deeply by asking me what the date was and what my birthday is right after I had my seizure, I forgive you. I realize now, you actually probably didn't even care about those specifics, you were just doing your job. I also apologize, I am pretty sure in my haze, I managed to roll my eyes at you in exasperation, but I digress) Let's not even get started on people who have to deal with all the gross and yucky parts of being human and needing help AND THEY CHOOSE THIS.
I am so thankful people choose to spend their life thinking about how to make a better MRI machine or the best way to open someone's head and remove benign brain tumors. I spent my formative years at ART SCHOOL. Don't get me wrong, art school is a wonderful place and art is healing etc, However, in an emergency situation such as mine, the healing powers of art takes a back seat to people who know how do poke an IV into your vein properly. I would suck at that. (Fun fact, my post-seizure brain loves it when I type "IV" but instead of my inner voice saying "eye vee" my brain literally says "FOUR" in all caps. Every. Single. Time. It is the funniest party trick that I perform for myself alone. Who knew Roman numerals were so deeply embedded in my subconscious)
Me choosing to blog about all this is not noble at all. For gaining deeper understanding, sure. Also, I would like it to be helpful to others (especially any other brain tumor people. As we find each other in this, I'm finding out we are instantly good friends and part of a very exclusive club) but that is not my reason for doing it. I'm doing this to shut my inner dialogue off. Just like writing a grocery list helps helps you gather all the things you need at the store, this allows me to offload all the random weirdness rattling around my head and puts it neatly into one place.
"But you are handling this so well!" Again, no, not really particularly well. I'm not handling it particularly badly either. I'll bet I'm handling somethings better than one friend would and other things way worse that some other friend would. Just like all things human. Like I said above, I'm just good at explaining stuff. I'm funny. I think of words and edit and rearrange them and then put them in a blog or a journal. I am also good at self editing my inner dialogue. I leave out lots of selfish thoughts and internal comments that would make me sound terrible. I leave out lots of audible comments I've made that weren't helpful to everyday situations because sometimes stress doesn't filter stuff so good. These posts don't give the full spectrum picture.
Seriously though, at the moment, I am walking through each day making choices. We all do that everyday, but right now I have a few huge choices and not a lot of options. If you were placed in the same situation, you would do the same thing. Make choices. You can't really put a lot of those choices off any longer since in a situation like this, time is a wonderful sweet luxury. Some of your choices might be similar to mine, some might be very different. Lots of choices you would find out are presented to you because of many other choices you've made over the years too.
Anyone who is driving on the highway and their car runs out of gas is faced with similar choices. You have a big choice: sit in the car and wait for rescue or try to flag someone down? Were you prepared? Did you bring a cell phone? Do you have a gas can that you can fill up? Do you have CAA to come and give you a tow because you pay for that service every year? Those are ideal choices in an ideal world. Sometimes you run out of gas and there is no cell service and the road is deserted. Sometimes it is better to get out and walk. Sometimes it is safer to stay in the car where it is warm. All choices. All time sensitive. All yours to make. Some people are given similar yet totally different choices for the same situation. There is nothing brave about it. Its just making choices. Some choices are better than others, sometimes we make poor choices, sometimes we have only awesome choices to make (or the flip side, only hard choices)
I realize, attitude definitely plays a part in all this for sure. I'm choosing at the moment to have a good attitude on my blog. But choosing your attitude is a daily choice, kind of like breakfast. I realize a lifetime of choosing 2 sausage McMuffins are going to yield a different outcome in someways that choosing organic granola and fruit, but I don't know where I was going with this rabbit trail. I will say though that this morning, I definitely chose bad attitude for about 4 hours. Full on sullen, self absorbed and grumpy it tasted like the bestest, greasiest Sausage McMuffin on the planet too. So there.
Back to big choices though.
Right now I didn't choose a brain tumor or to have a seizure. I didn't choose to call 911 or have a CT Scan (I could've theoretically refused those services but post-seizure is not the time to really think deeply about stuff) I do choose to take my meds. I have chosen to ask for some well wishes and practical assistance, I've chosen to be upfront with my kids and friends etc. Those are important choices, but they aren't the biggest choice.
The medical system has a door that you choose to either walk through or bypass. (at least in Canada is straightforward like that) Once you walk through it you get one of those cool automated sidewalks and you show up where and when they tell you to. You ask questions and self advocate as needed, you make choices based on their advice and knowledge with the idea that at the end of it you are better or have your life extended or improved somehow.
That wonderful sidewalk is made up of people who are the brave and inspirational ones who deal with all the weird garbage growing on my brain and me making endless jokes about "needing ____ like I need a hole in my head" because at the end of the day, they are really good at giving me the hole in my head that I really need at the moment. They made that choice to specialize in whatever moving sidewalk I have to get on at the moment that whisks me away one step closer to being healthy. Not a perfect analogy and everyone has had that one bitter professional that sucked the life out of their day, but overall this is how I see things at the moment.
Now onto other things - Practical life update:
I have a to do list that is written by someone with a brain tumor. It is long and time is short before surgery and I keep dropping threads. Again - please extend grace and friendship if I was supposed to get back to you about something. My orbit is like a comet that has been knocked a little off course. I'll get back to you presently but I'm not as reliable as some of those other comets. I've been having headaches and no energy which puts a damper on this party life too.
For those of you who have offered to help. My sweet husband combed through my phone and my messages and emails and cobbled all the "I'd love to help" messages into a spreadsheet. Offers of cleaning, rides and post-surgery help: we will get back to you onces we have a better idea of what we need. My dad is coming out for a little while once I am out of the hospital to make me snacks and keep the drool from puddling too much on my pajama collar as well.
If you said "I'll bring a meal" or "I'd love to help" in an undefined way, you will be most likely sent an email from a thing called "Meal Train". This is merely an online schedule that has days one can sign up for to bring a meal. (thank you Carol for setting that up) The reason for this is it is impractical and a waste of everyone's time and effort for 5 people to show up on the same Tuesday with a lasagna, although my youngest daughter would feast like a king. This website spaces things out and people can take a peek at other days different people have signed up for and make a choice such as "ah, I see they have lots of chicken dishes, I'll do lasagna" or if you are kind of devilish, you look at it and say "looks like they could use more chicken, heh. heh. heh." Whatever works.
Please do not feel obligated to sign up just because you got that email. It might not work for your availability. We get that. Please also don't feel like because there are _____ amount of spots on there that you need to handle a bunch of them. In past experience of other friends who have used this, it will fill up as needed and that might take a few days. We have 6 weeks open with 3 spots a week open and plans on how to fill the gaps in between. We are flexible in days and times as well as the idea that we might need this shorter or longer than 6 weeks. We also have a chest freezer and 3 teenagers who are ace at reading heating instructions for food.
As some of you know, I have a super restricted gluten free diet. I absolutely SUCK to cook for. Please don't. Cook for my family and make it as gluten-ey as you want. We already have safe food tucked away for me. Plus I'll be in the hospital. Plus I'll be heavily medicated. Plus I'm used to it. Give them a casserole dish of just flour. They can figure it out. LOL. (please don't do that, but the idea of them looking forward to something and pulling back the foil and its just flour makes me laugh.)
Also, I'm finding internet/Facebook/Instagram time on my iPad (I write my blog on my laptop and its different and awkward but easier but shorter overall) needs to be limited in my interactions. I'm getting headaches. So, please absolve me ahead of time for taking the lazy route and not responding to everything or just doing emojis and "likes". Normally I hate that but its a survival skill for the next while. Which is hard because everyone is so sweet and I am a polite Canadian and it is embedded in my DNA. I have read your comment or your email and thank you. You have no idea how incredibly loved I realize I am and it is super humbling. I know the best people ever. I have AMAZING taste in friends and family.
One last thought that was shamelessly stolen from another blog but I don't remember which one so I won't take or give credit here:
For those of you feeling inspired by this (hahaha see what I did there?) or feeling like you wish you could help but you can't because you are far away or strapped for time or fighting an awful battle of your own... our family has lots of help coming in at the moment and we are just trying to get it organized.
I propose you help in a different way. I'll even give you a choice ("not making a choice" isn't a choice I want you to make, but it is a choice too, it will be an implied #3 on the following list I guess)
1) Affirm or encourage someone else today. I've gotten tons of that and I've needed it. I bet there is someone who isn't getting that in your life that you could shoot an email or text too. Call your parents at the very least. One awesome part of this is I've talked/texted etc with more of my immediate and extended family this past week or so than I have in years. It's in our DNA to not call I think. We are all like that in my family. The thing is, I love picking up the phone and hearing them on the line. Even if the reason has been sad sometimes. If you have a friend who has been going through a long valley (unemployed, getting divorced, kids going through some sort of hard to parent phase... ) send them a "I was just thinking about you today - how ARE you?" text. Those are the best because sometimes you get "AWESOME! Let me tell you why" or you get a chance to walk beside an old friend going through a tough time for a few moments and reconnect. Both are good things.
2) Go give blood. I'm totally serious. I used to give blood and I had to stop because I have anemia issues. I loved giving blood. People are super nice, you get to help in an abstract sense and then you get snacks! Best free date there is in town! My blood type is O- which means they always particularly loved me coming in because you can give my type to anyone. I am the universal donor. The problem with that is, O- can only receive O- and as someone going in for brain surgery next week, I don't want all you A and B types hogging all my blood. Give and get your own this time! Also you get snacks. Even gluten free snacks if you ask... which are sometimes (drumroll please) DOLE FRUIT CUPS. I do not lie.
To read the whole story of my Meningioma click here.