Random blather

It's been a while now since I've come out of denial about my illness. I've had some time to at least begin to grieve the losses that have come with it. Friends, family, future plans, hobbies... my loss list is long and detailed. I have also been able to receive some gifts from my illness - it's not all loss. But the gifts don't make the loss any less real, any less difficult.

One of the bigger things I've lost is my ability to be gainfully employed. I haven't been able to work even part time in over two years. All the shame, judgment, and social implications aside, there is something that feels degrading about having my daily purpose and to an extent, my financial independence stripped away. These have probably been the hardest for me to adapt to. And yet, adapt I must and I will!

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Me, at peace, making art in my home studio, 2013
I want to maintain this elusive calm in my work life

There are at least a couple people in my life who've recently brought up the topic of nostalgia. It's not just thinking about or idealizing the past though, it's this recognition that there is something they're longing for that isn't present in their lives anymore. 

I feel it too. Sometimes I don't realize it until something twigs this burried memory of a feeling I can rarely tap into anymore.

Pride Parade

Sometimes you feel it in crowds, at a festival or a concert. Sometimes you feel it out in nature with people who are special to you. Or on a road trip driving late into the evening with the music blasting. Or your first time in a new city at sunset... 

Goodbye 2013. 

BB Day 27

You rivaled 2012 for how shitty I often felt, both physically and emotionally. But I also had some reprieves and glimmers of hope, showing me that change may be slow, but it's still possible. 

You were at once one of the hardest and most important years of my life. I'm tempted to say "good riddance", but that wouldn't be quite right...instead I'll say thank you.

For a while now, I've been questioning whether or not Vancouver feels like home. Just a few weeks ago, I was ready to throw in the towel and give somewhere else a shot. 

wilting hydrangeas

Even if it meant leaving my amazing healthcare team, renting out our house, and (dog forbid) moving. I was just sick of being here! (This sentiment seems to come in waves and this was a particularly strong one.)

So, I was thinking this morning... life is weird. Stupid small things seem so important when they're not, we fuck up on the most critical stuff all the time, we hurt each other, and love each other, and it's all so fragile and gone in the blink of an eye. 

As some of you know, I read and loved Brené Brown's Daring Greatly. I only just recently remembered to go back and listen to the last couple of podcasts the did for the chapter-by-chapter read-along she did on her website. You can still get to all of the read-along posts here (there's an audio file attached to each post - I'm not sure if they're accessible on iTunes anymore). Even if you haven't read the book, but especially if you have, these little audio/podcasts are about 20 mins each, and really add a lot to the discussion around the content of the book.

I really loved and got a lot out of a part from the Ch. 7 audio, so I transcribed some parts to share them with you, and bolded the biggest takeaways.

Since my creative energy started flowing again over the last several months, I've been frittering a lot of time away on various projects. Writing Chronically Yours, sewing, drawing, painting, working on my 365 project. That on top of the usual things I do these days: self care (sleep/eat/exercise as able; go to appointments/get tests/take supplements and medications), house stuff, garden maintenance; rest, rest, rest... I've been feeling a little all over the place. Not exactly what I was going for.

You got to push, got to shove
I've got to eat before they eat me
Got the crown and the cup
I've got to write to my family
And say, "I'm calm and feeling warm."
I'm not quite there, but I'm close
And it's a world of difference​

(Life on the Nickel, Foster the People)

Sometimes life is fine and dandy, and you can just let it flow. Just live. Just be. Other times, life smacks you upside the head and says WAKE THE FUCK UP. You realize that a lot of things are really wrong, and they have been for a looooong time. At this point you can either stick your head in the sand and maintain the status quo, or answer the wake up call. If you answer, you're signing up for hard work. If you don't answer, you're signing up for more of the same. Neither one is pleasant, but one at least holds the potential for things to get better.

I was surprised how much (mostly private) feedback I got about a couple of my recent writings on friends and on health.

Almost every email, comment, private message, etc. I got about these posts was some form of this (paraphrased): "Wow, thank you for writing about this, I have totally been struggling with this so much and it's a relief to know I am not alone and/or get some info or insight about it."

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The reason this surprised me is that even now, after having this sort of experience with previous posts, I still often feel like I really am pretty alone in dealing with these things. I feel like I'm really going out on a limb by writing about them publicly. But again and again, I get these responses from people... which begs the question: Why aren't we talking about this stuff? No, this isn't a rhetorical question, I really want to know why everyone's not talking about this, out in the open!

How to be friends. This is something that I thought I knew how to do. The last year upon the last five years has got me seriously doubting this... It turns out I most likely know nothing.

I recently got on the Lifeboat boat, they've been asking interesting questions and writing interesting stories about friendship. There's a lot packed into their Lifeboat Practices... there's some real gold in there. There are also some harsh truths they've unearthed, truths that make me realize at least I'm not alone in my struggles.

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