Everything we need we already have

What is this? A new post? Could it be?

Yes, believe it or not, I have not completely abandoned my blog. I’ve only half abandoned it, and it’s only because I’m still on the struggle bus. This flare up mixed with life circumstances right now has me feeling overwhelmed and worn out.

But that’s going to change soon! Or at least that’s what I keep telling myself.

And! Despite all the blah-ness going on these days, I got to be part of something really cool yesterday. About five months ago I got an email from someone I’ve met before who organizes “EDvents” and he was wondering if I wanted to be a speaker at the EDvent in April.

What exactly is an EDvent? From their website: “EDvent is an extracurricular pro-D event for K-12 educators and pre-service teachers throughout the lower mainland.” There are 10ish speakers who each get five minutes to talk about something to do with their teaching practice that relates to the theme. By the way, last night’s theme was “Get Fed.” I was very hesitant at first because I’m not a teacher and umm I don’t eat, but I agreed anyway.

I was even more hesitant the last few weeks because of whole sick and tired and overwhelmed and worn out thing, and I didn’t know if I had it in me. But I rallied and it was a really great experience, plus the audience was really supportive…including a woman whose daughter had been on TPN for a year and a bit after she was born!

The total body backlash today is worth being there last night, and I can’t really ask for much more than that.

And just a shout out to the event organizer, Gabe, for making the evening accessible to me. He made sure I had a chair to sit on while I spoke (which I totally recommend for anyone who struggles with blood pooling because talking and breathing is hard enough on it’s own without all your blood being trapped in your legs) and he let me speak earlier in the night so that I could leave early and get home to start my TPN. Thanks, Gabe!

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I left the house. And I even wore a dress and everything. And the dim restaurant lighting totally hid my paleness which is always a win.

Anyway, here’s what I said:

The whole premise of this evening’s event is rather interesting to me for two reasons. One is that I’m a bit an imposter here. This is an education focused event, and I’m not actually an educator. I’m related to a whole bunch of them, but I myself am not one. And two, with respect to tonight’s theme of Get Fed, here’s a fun fact for you: I can’t eat.

My medical history is long and complicated, but due to a genetic disorder, the connective tissue that is supposed to hold me together doesn’t do its job and so I’m basically falling apart everywhere. Joints, skin, blood vessels, organs.  Most notably my digestive organs are no longer able to process food. So I can’t eat. Instead I have a permanent IV catheter in my chest and I get all of my nutrients and fluids though a specialized IV solution. And because I’ve had these questions before, let me just clarify that no this is not because I’m vegan or gluten intolerant or I just don’t like eating my vegetables. Medically, I am unable to eat.

So perhaps you can understand now why the theme Get Fed is amusing to me, seeing as I haven’t had a meal in over three years.

But I think we all know that we’re not here to swap recipes, because in life we feed on so much more than just the food we eat. We are fed by our experiences and our connections with other people. We are fed by a sense of purpose and opportunities to create change. And if you are anything like the teachers in my life, your job feeds you. The successes of your students are your successes.

But what happens when all of these things that feed us are taken away? What happens when we lose everything that makes us who we are?

It’s not something we think about because we don’t think it will ever happen, but that’s what happened to me.

Five years ago I was thriving. I was a year away from my degree and I had big goals with everything in place to reach them. And then, I got sick. And as I desperately tried to keep my life together, I watched it all fall apart. First my education, then my job, then my future. Everything that fed me, everything that I thought defined me and gave me worth as a person, was gone.

Oh, and also I literally couldn’t eat anymore.

So I was starving. Inside and out. But I’m not starving anymore, because of some pretty advanced health care, and because what I learned next changed my life.

By the way, this is not the part of the story where I bravely overcome my illness and go on to reach all of my dreams. I mean, that would be a great story, but it’s not my story. My illness can’t be overcome, it kicks my butt every day.

Rather, what I learned next was that even though my life was in pieces, I was not powerless because I still had choice. And that’s the truth that now feeds me: everything I need to live my best life I already have. I’ve always had it. And that’s choice.

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Paparazzi shot. Aka mom took this. Mom’s comment after: you looked so comfortable! And you looked 12.

I don’t think the most important choices we make in our lives are the ones we assume they are, you know, those milestone decisions. The choices that define our lives are less complicated than that. Choosing joy over sorrow. Choosing hope over fear. Choosing to be grateful for what we have instead of resentful of what we don’t. And choosing to continue making these choices not just when we have everything, but when we have nothing.

Sure, goals are important, income is helpful, and I hear pretty good things about being able to eat food. But these are extras. We can have all of these things, and more, and still feel empty. What matters most aren’t the decisions about what we do with our lives, but the ones about how we live them. These are the most important choices we make, the ones that define who we are. These are the choices that lead us to live our best lives.

I will probably never eat another meal in my entire life. I don’t have any degrees next to my name or any job to call my own. I live in a body that beats me up every single day. My life doesn’t look anything like I want it to, and if I could change it, I would in a heartbeat. And yet I am still living my best life.

Because I choose to.

And you can, too.

 

When life punches you in the face

Hiiiii friends.

Long time no see! Or talk. Or blog. Or whatever. Long time no something. Here’s a pretty photo of what it looked like here recently!

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This is definitely the longest I’ve gone without writing a new post since I started this blog three years ago. It’s also the first time I’ve skipped an entire calendar month. Time is kind of foggy for me right now. It feels like it is dragging on forever, the days sometimes unbearably long, yet time also seems to be passing very quickly, and that email I read yesterday and was going to respond to the next day has actually been sitting untouched in my inbox for a week and a half. It’s a little disorienting.

I also composted a pair of socks and put some crackers away in the fridge instead of the cupboard, so clearly it’s not just time that has me mixed up these days.

But anyway, my sources tell me that it’s now the middle of February so there you go. (That sentence used to read “the beginning of February” because when I started writing this it was in fact the beginning of February. See above, re: the passing of time is confusing.)

Things with me are mostly the same as they were at the end of last year. Quite a lot has happened since then, but so far no answers as to what has been going on and why I’ve been so unwell lately. I’m still waiting to follow-up with some people, I’m still waiting on some tests, and I’m also waiting to see some new people who I don’t get to see for another few months.

In the meantime, I’m still humming along and doing my best, but it’s hard. And frustrating. And tiring. Some days I think I’m feeling better, but the truth is that I’m just getting used to this. I’m doing the thing that people with chronic health conditions do when things go downhill and stay down for a while, and I’m adjusting to this reduced level of functioning. I’ve done it before. On the one hand, this adjustment is helpful so that you stop waking up every day thinking why is everything so terrible? On the other hand, it’s discouraging when you look back at where you started and realize just how many adjustments you’ve had to make over the years.

Mostly, though, it has nothing to do with one hand or the other, but rather it’s an “it is what it is” shrug of the shoulders.

On the plus side, when I go to appointments now I don’t have to worry about whether or not anyone will believe that I’m sick because these days I actually look how I feel. As twisted as it might sound, this is actually validating. I’m not thrilled about the growing list of people who have expressed concern for me because of my appearance, recent additions including my pharmacist and the guy who delivers my TPN, but it’s also comforting to know that it’s not just me, that they see it, too.

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Do I look healthy or what?

Last time I saw my family doctor we discussed how I wasn’t feeling or looking better, and how it kind of looks like I got punched in the face and am recovering from two black eyes. And then we decided that life is the one who punched me in the face. And then we laughed about it because in a situation like this, what else do you do but laugh?

Anyway, that’s where I’m at.

Now, the real question is, besides laugh about it with your doctor, what do you do when life punches you in the face?

I feel like the answer here is maybe supposed to be punch back? I don’t know, but that sounds like it requires a lot of energy which I don’t have, plus I’ve never really been one for punching. And then there’s that whole an eye for an eye business to watch out for.

So, no punching back. Instead, I’ve chosen content as my one word for the year and I’m putting all of my energy into that. By the way, I mean content as in a state of peaceful happiness, not content as in the contents of something. Content, as in contentment, as in feeling content. It’s also important to note the difference between being content and being complacent. I may be getting used to this, but I’m not complacent about it. I haven’t given up. I haven’t resigned myself to a life of looking like life’s punching bag. Not yet, anyway.

I’m not complacent. I’m just content. Or at least I’m trying to be.

My life looks a lot different than usual these days. I can’t stay awake all day, so I sleep every afternoon. Despite the eternal list of things I want to crochet, I don’t have much energy for actually crocheting, so I’m turning away orders and sometimes letting days go by without picking up my hooks. And being social, even just via social media, has been particularly draining lately, so I’ve got close to one hundred unchecked Facebook notifications from two weeks of mostly avoiding it.

None of this, however, means that I can’t be content. It certainly makes being content more of a challenge, but it doesn’t make it impossible. It’s always harder to feel happy and peaceful when things aren’t going well, but that’s when making the effort matters the most.

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So I’m making the effort. I’m making the best of things. I’m letting myself just be still. Even though things are pretty tough right now, I’m still finding moments of contentment every day. It’s not perfect and it won’t be enough forever, but it’s something, and it’s enough for now.

And at the very least, it’s better than an eye for an eye.

 

 

Keeping the faith

And here we are at the end of another year.

It’s time for that reflecting-on-stuff thing we humans tend to do in preparation for the fresh page we like to envision ourselves starting on when the day, month, and year switch over all at the same time.

In some ways January 1 is just another day, but in other ways it is more significant. Budgets reset, health insurance deductibles start over, and other financial-y things that I don’t really understand probably happen, too.

But not everything resets when we put a new calendar up on the wall (that is, of course, if you are the kind of person who uses an old fashioned wall calendar…I happen to be that kind of person). Most of our problems, those stresses and worries and unknowns that we carry with us, well, they don’t just magically disappear when December 31 switches over to January 1. They’re still there. Still problematic, still stressful or worrying or unknown.

And that’s kind of where I’m finding myself at the end of this year.

Now we’ve come to the part of this post where I get all honest and tell you about things like being frustrated and crying.

The last several months have been pretty tough for me. Some really awesome things have happened and I’m grateful for all of the kindness, encouragement, and generosity, but things have still been tough.

If you’ve seen me recently this probably won’t surprise you because I don’t look very healthy. That’s not an opinion or an insecurity, it’s just a fact, and a fact that concerned my GP when I saw her last week. My already pale skin is vying for the title of palest of pale skin in all the land, and its effort is matched only by the dark circles under my eyes. Apparently under eye semi-circles are out and dark circles that encircle the entire eye are now in. At least that’s what my face seems to think.

I’m really not surprised that I don’t look my best, though, because I don’t feel my best, either. I’ve been really struggling with energy. I’ve been doing things when I can because that’s healthy and important, but most of the time I do anything I feel crushed by fatigue. Even things that should be easy like talking and going upstairs. It doesn’t seem to matter how faithful I am about doing my PT exercises, overall weakness keeps dragging me down. And everything seems to leave me short of breath.

At first I wasn’t concerned about any of this because I was anemic and these are all symptoms of anemia. Iron infusions would help that. And since I know that blood counts don’t return to normal the second the iron enters your bloodstream, I just assumed that there were no improvements yet. But then blood tests from last week discouragingly showed that I’m responding really well to the iron and that my labs are improving. I say discouragingly because my numbers have improved enough that I should feel significantly better.

But I don’t.

There are other frustrating health things happening, too, but I’ll complain about those another time.

For the most part, I’m a pretty patient person. Especially when it comes to health and medicine. I wait for appointments. I wait out nausea and pain. I wait for months before bringing a new symptom to anyone’s attention, hoping it will go away on its own without me having to bother anyone. I’m not trying to martyr myself, but I deal with a lot because this is my life and I have no other choice.

I don’t make a fuss very often, so when I do make a fuss and I do somewhat desperately ask for help, it’s because I really need it.

And that’s just what I did last week when I contacted my TPN team, the people who are entirely in charge of my nutrition and fluid intake, and basically said hey I’m not okay is there anything we can do? Could the values that are out of range be contributing to the awfulness that I feel? This is where the crying comes in, because the TPN team basically said everything looked really good (they were looking at my routine labs and not my face) and they had no concerns. I’m not sure why a normally cheerful patient saying they feel horrible and fighting back tears on the phone isn’t a concern. To be fair, they’re good medical professionals and it’s hard to do things over the phone and around the holidays when people are away, and so I’m hopeful that things will go better when I actually get to see them in a couple of months.

But in that moment, I felt completely dismissed. And on my own. And I cried it out because sometimes you just need to do that. There’s a reason the phrase “a good cry” exists.

So now what? Well, thankfully I have an amazing GP who, when I emailed her later that day, replied and made it clear that she was going to help me figure things out.

img_0961And in the meantime?

I am keeping the faith.

(I am also existing mostly as a floating head above a lump of blankets…haha I guess sometimes people are potatoes after all.)

As this year comes to an end, I find myself tired and worried and pretty worn down, and none of that is going to change overnight. But that’s not the entire picture.

I am still holding out hope that slowly but surely things are going to improve, that my body just needs a bit more time. I am trusting my doctor to advocate for me. I am counting on the people around me to help keep my spirits lifted. I am making plans, and setting goals, and carrying on, because what else can I do?

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Let us not forget about snapchat filters that make us look better than we actually do.

What else can any of us do?

Tomorrow we put up our brand new calendars as we start a brand new year, but we also just carry on from this year. Those financial-y things reset. We don’t.

But we do carry on. We rally. We keep the faith. Because what else can we do? …and also because there are lives to be lived.

And experiences to be had.

And joy to be found. Always.

Happy New Year!