I had my post surgery follow up yesterday. It went well, my neurosurgeon said I could now be considered a normal person (haha, I'll take that with a grain of salt) and I can resume all my regular activities. One very important thing we did talk about yesterday was weaning off the medication I've been having to take since late December. I am not going to lie, if there has been one really, really difficult part of this journey, its being on this medication, I have had the occasional really dark day and it has only gotten worse the longer I've been taking it. I can only describe those days as "despondent" in nature. Thankfully I was given the green light to try going off these meds - I'm hoping and praying I will remain seizure free.
Now, entering into this whole health saga and blogging about my creative output, I made a decision pretty early on - I would always have some little job to work on or some prep to keep my hands busy even if my head or heart wasn't in it. I've already been dealing with chronic illness (unrelated and very well managed) for over a decade so I know how recovery ebbs and flows. Some days when you feel good, you can make miles of progress. Bad days can sometimes only be measured in inches. However, inches add up. Many bad days can set the stage for what looks like miles of progress on a semi good day. The secret is chipping away at small pieces of the whole.
My Bad Day Project
Anyone who has followed my story will start to see a pattern is emerging. There has to be some sort of good coming out of all this awfulness. Beauty for ashes so to speak. It honestly is the only goal that I have reliably set my eyes on. It has carried me through some really awful moments. Seeing the good in this season has kept me moving forward.
When I met my neurosurgeon, the biggest thing that made me trust her was that she works with kids. Parents have to trust their kids with her during very scary times. I used to work with kids and it is an absolute privilege and pleasure to be trusted with them. The stakes are that much higher when its life or death. I do not envy her job in the sense of the magnitude of having to deal with kids who have brain tumours, brain cancer or brain surgery. Trust me, any of these things are hard enough to deal with as an adult. I get choked up thinking about what that would be like as a child (or the parents of a child).
So, right after I met with her about my surgery, I asked myself if there was anything I could do that might help some kid going through a situation similar to mine? That is when the idea hit to make health card sized documents that could empower them during their journey.
I did not invent the idea of "playing the brain surgery/tumour/cancer card" concept. I'm sure a hundred or more people have made their own variations over the years as well (I actually have never googled it because that doesn't matter) I first heard about the idea of a "cancer card" a few years ago when a dear friend was fighting her own battle. She and her husband referred to this mysterious card in relation to kids missing a deadline at school because it fell on a hospitalization day. Needing an extra dose of understanding when meds caused awful mood swings. Needing Tim Horton's chili because it's the only thing that appealed for breakfast. The Cancer Card - getting one means you are a part of an awful club. There is for sure a Brain Tumour Club and a Brain Surgery Club (and those are different, not all people with tumours get surgery, not all surgery patients have tumours). Wouldn't it be neat to have an actual card one could show? Especially if extra treats are involved.
Now coming up with the idea and then actually thinking through the steps whilst dealing with a brain tumour/brain surgery is REALLY freaking hard. I am not going to lie. That is equivalent to me asking you to design a skyscraper. Where do you even start? Even if you have built a skyscraper, try doing it hopped up on meds and having had someone drill a hole in your head, yeah, now you get it.
So, since January, this became a constant low level item on my to do list. On good days, I'd think about my next step on bad days I'd just do that step. To say that these cards pictured above were made with love is an understatement. They were some of the most difficult and some of my best moments through this journey. The only reason why I made them was to give them away. Hopefully to give someone a bright moment in an otherwise really awful situation. My deadline was my post surgery follow up so I could give them to my neurosurgeon as a gift. A thank you for all the years she spent honing her skill so that my biggest issue from the whole ordeal was dealing with how bad those medications affect me. This was also my way to fight the meds.
Now, I'm not a saint either, I will probably make more of these to sell at some point but those won't have nearly the same amount of my heart poured into them. I do have to make a living somehow, and these are pretty cool. However the batch above is special. I remember how long it took to figure out the exact measurements for wallet sized identification documents. Cutting the paper to size. Sitting in a dark room rounding the corners with a handheld clipper (that was a hard day), wording and rewording in my head. Printing in two rounds so I could do two ink colours. Trying to set type that is upside down and mirror image, trying to get perfect registration. Hard enough to do on a good day, very challenging during recovery.
Anyways, I've given most of the brain related ones away, I made extra of the Cancer Card ones because I have plans for those too. Too many people I love have to deal with that monster. Brain stuff is a little more esoteric I guess. I know they seem simple and to the expert eye, there are imperfections but I can honestly say it was the best I could do on some pretty bad days. Totally worth it too.
To read the whole story of my Meningioma click here.