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.
1/9/2018 10:31:46 pm
In addition to 2/ if you have anemia and the facilities are available near you, you can give plasma instead of blood. It's a little longer (bring a book), you might need to schedule an appointment I stead of dropping by but it does not tiré you so much. I have an appointment on friday :)
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