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!
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.
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.
Finding my Miracle 
I have found your blog & especially this story of speaking uplifting. I came to rare complicated illnesses and daily pain later in life (from late 20’s). I am still intensely private about it, through the experiences I have had also and could not imagine speaking to a room full of people like this if they knew about my illness. People do really need to learn about the chronically ill. We are don’t need to be ‘well’ to experience miricles as you point out.
You show such reflection and maturity for someone a few years in. I like how you have put it out there that chronically ill people win everyday we keep battling and being ‘in’ life. It has taken me over 10 years with physical suprises along the way to come to any kind of acceptance and to know this accepatance is not so much about giving up but learning how I can live for myself and those that love me, including my daughter. I needed to hear your words today. Thankyou for sharing this lovely story & for the words in Blog. Greetings from Australia. Wishing you a not flaring day.
My apologies I see you are more than a few years in. I misread- It seems it is years since you did not recieve nourishment medically. gosh.
I have faced losing bodily functions and got to keep them. I am not grateful enough with this sometimes on bad days it is too easy to focus on what is lost. Thanks again for your words keep writing !
I forgot to add that I quilt …I have figured out a way so I can sew in bed…machine and all…lol…I know how to crochet basic stuff but I want to learn how to make those adorable crochet animals on pinterest. I could not find my original post to add this to it…..Lisa
Dear Catherine,
While you may not be a working teacher or pre-service teacher, you are certainly teaching so many people about life that it is totally appropriate that you ‘educate the educators’ with your perspective and the lessons you have to give.
I like how you addressed the audience’s curiosity and headed off the inevitable irrelevant personal questions in a single paragraph right from the start. That way, the audience can focus on your main message without the distraction of still wondering about their unanswered questions.
Good job on dispelling the cliches of ‘overcoming illness’ as well! It is good for your audiences to get a dose of chronic illness reality – that our illnesses do take charge most of the time and it is no one’s fault, it’s just the way it is.
When there are only ever stories of ‘heroically overcoming the odds’ other people start laying unrealistic expectations on those with illness as if to imply that we mustn’t be trying hard enough etc. – a totally offensive attitude! (Sometimes, it’s too exhausting to even ‘try’ and we just have to ‘go with the flow’, ‘hang on for the ride’ as best we can until things improve.)
Your speech is very timely for me as it coincides with a week where I finally learned how much of my experience is normal for people with my diagnosis and have decided that “I am okay with that” after much frustration and self-doubt. Your speech has reinforced my recent decisions around acceptance and seeking help and strengthened my resolve to do what I need to do to continue living my best life. Thank you for that.
How exciting for you to be getting out and about, meeting new people and public speaking! You have such a talent for words, it is great that you are finding more ways to express them. It would be great if regular public speaking could be manageable for you as a source of income since it is so hard to find ways to earn income when chronically ill.
Who knows, meeting today, broadcasting tomorrow? 😉
Take care, and I hope you are not laid up too long!
Jodie xxx
Funny thing Jodie – there is actually a camera man in my room right now filming me type this for tonight’s news! You’re a bit of a psychic 😉
Haha! I just saw the news report and wondered whether you were in that chair as you responded to this page of your blog!
My goodness but you’re an inspiration. If nobody shares their amazing and life-changing stories how will anybody learn about them? Thank you for being brave and strong enough to share yours. Peace, blessings, and strength to you ❤
Thanks so much Heidi! I agree completely. Strength back to you!
Fantastic talk Catherine, it must have taken a huge effort to do this knowing the toll on your body afterwards. Thank you for sharing.
Haha why yes it was a big effort with a big toll, but I’m really glad I did it 🙂
Word.
What a great piece, Careful. Loved it 🙂
Thanks Steve!! P.S. I visited Hina and Susan at DSRF earlier this year and we recreated your dramatic exit from the elevator…and by that I mean that time you totally and hilariously wiped out.
Thanks for sharing… so very true!
May the Lord richly bless you, may His face shine upon you and give you continued joy.
This was wonderfully inspiring! It offered me some great insights on leading my best life and on trying to help my hEDS, POTsie, MCAS daughter lead hers. Thank you!
Thanks Donna – all the best to you and your daughter as you try and navigate things!
My compliments to whoever chose you for that talk. That person, and you, were brilliant.
Oh wow Catherine! I can’t find words to respond to your profound insight into what it is to live fully. I’m glad so many people had the privilege of hearing you speak. Your courage, love and humour are so inspiring. I hope that one day, you and your loved ones will gather all your blogs, posts, pics and put them together in a book. I’d love to read it and give it to people as gifts. What will you call it I wonder? Hoping and praying for some answers for you, and that meanwhile, a little energy boost will come your way. Thank you xx
Thank you so much for the amazingly sweet comment ❤
Very inspiring Catherine. thank you for reminding us about what counts, what is really important and what matters.
Catherine: you look positively radiant and I am so proud of you for taking this chance to share with others, especially teachers who help children on a daily basis. I pray that you will overcome the latest attack on your system, so you can continue teaching us all that we have so much to be grateful for in this life.
Good to see you writing a bit! It looks like you had fun at the event. I hope things get a bit better for you. Good thoughts!
Thanks Kate! I hope so too 😉