If I had to pick my finest hour, I would not pick yesterday between 3:00 and 4:00pm. Seeing as I’ve lived approximately 225 495 hours at the time of posting this blog (there are places on the internet to calculate such things for you), I have no idea which hour was my finest, but I can say with absolute certainty that yesterday between 3:00 and 4:00 is not even in the running.

And now I shall tell you a long story.

Yesterday I had an appointment with a specialist at 3:20pm in New Westminster. Now, I go to New West for specialist appointments all the time, but the appointment yesterday was not in the area of New West where all my other specialists hang out.

Before I left, as I do before I drive to any unknown location, I zealously mapped out my route and my back-up route. Google Maps told me it would take 24 minutes, but I gave myself 45 to account for extra traffic, and because being late is honestly one of the most stressful experiences for me. If we run into traffic on the way to a really painful medical procedure, I will genuinely be more stressed about not being on time than I will be about the procedure itself.

I’m not even kidding.

I’ve been like this my whole life. When I was in high school, Mondays made me nervous because that was my mom’s day off and since she didn’t need to get to work, my siblings always wanted to leave 10 minutes later in the morning. We left at 7:50 on Mondays instead of 7:40, which meant we arrived at school between 8:10 and 8:15 for an 8:25 start. But what if there was unexpected traffic? Or what if, as per usual, my brother wasn’t ready until 7:52? I started dreading Monday mornings on Sunday nights, that’s how much I hated even the chance of being late.

There are many more examples. You should ask Holly about the time at the Bellingham airport when I couldn’t find a parking spot.

I’m not particularly proud of the fact that the fear of being late transforms me into an agitated, stressed out, snappy person, especially since I hardly ever end up actually being late. It’s just that the possibility of being late makes me anxious. Heck, even sitting here and thinking about being late is making me anxious.

Anyway, back to my story.

I was driving to New West. The street I needed to turn down wasn’t obvious and I missed it. Woops. My back up plan was then foiled by a no left turn sign where I needed to make a left turn. Yikes. As possible get-back-on-track plans started racing through my mind, the busy traffic turned to gridlock. I was stuck. At 3:16 I started crying. My appointment started in 4 minutes and all I knew was that there was no way I could get there on time.

(I was on the 10th Avenue, by the way. Feel free to share your own 10th Avenue tragedies with me.)

Finally traffic moved enough that I was able to turn right down a side street and start heading back in the direction I needed to go, except I was on the other side of 10th and the street I was looking for doesn’t exist there. And then I was lost, but even more than that I was stressed and upset. My appointment had already started, I had no idea how long it would take me to get there, and I was in no shape to see a new doctor who I was hesitant about seeing in the first place.

So I pulled over on a random residential street and parked my car. I called the clinic. I lied and told them my car had broken down and I couldn’t make it. And truthfully, it wasn’t a total lie…my car was okay but I, the driver, had in fact broken down. And then I sobbed my eyes out for about five minutes before pulling it together (sort of), wiping my nose on my shirt sleeve (because when are meltdowns ever glamorous affairs?) and driving home.

Person crying in car spotted in New West. Wearing sunglasses – obviously suspicious.

If I’m being honest, my biggest motivation for pulling it together was that there were some parents walking their kids home from school and I was worried that one of them might call the police on me for suspicious behavior…I was, after all, wearing sunglasses, which all suspicious characters tend to do. The thought of explaining to the police why I was ugly crying over such an insignificant situation was embarrassing. What if it went on my record? It was safest to just drive home.

And that’s my story. It’s kind of sad, but it’s also kind of funny so if you find yourself wanting to laugh at me, it’s okay because now that it’s a new day I’m laughing at me, too.

As I said, 3:00 to 4:00pm on Thursday April 27, 2017, was not my finest hour.

Sure, the fact that I hate being late, especially for appointments, was part of it, but it wasn’t the only factor. Mostly I was just tired. Over tired. Exhausted. Things are just really hard right now and I’m exhausted all the time. I’m exhausted because I don’t feel well. Ever. I’m exhausted from having to fight so hard for my health. I’m exhausted from all the waiting. I’m exhausted because it never ends.

I’m exhausted from holding onto hope because believe it or not, hope can be exhausting. It’s hard to be hopeful that things will get better when things always seem to be getting worse. It’s hard to have hope that someone will be able to help me when everyone is at a loss. Hope is tiring right now.

Tiring, but still important. Still necessary. And still worth it, even when it takes all of my extra energy, and even when it means melting down in my car and missing an appointment. And even though I’m tired from being hopeful, I’m not tired of being hopeful. There’s a difference. Hope is wearing me out, but it’s also what’s keeping me going. Life is like that sometimes. So I keep hoping.

And I keep laughing, especially at myself.

I’ve rescheduled my appointment for next week. My sister helped me figure out another route. I’ll probably leave an hour early to be safe. And hopefully I won’t meltdown in my car. No promises, but I’m hopeful.

Exhausted, but still hopeful, and that’s all that matters just now.

P.S. I have put a box of Kleenex in my car for future such incidents, just in case.

One day my Grandmere (my mom’s mom…she’s French) called me around ten at night. I’m sure there are a lot of people who would be alarmed to see their grandparents’ phone number show up on their screen at that hour, but I don’t think twice about it. She and I talk a lot in the late evenings, sometimes for long stretches of time and sometimes just for a few minutes. That night it was only for a few minutes as there was just one thing she wanted to tell me. There’s a note in my phone dated February 12 with what we talked about because I promised my Grandmere I would write it down.

Ready for it? She told me that in case she died first, she knew what she wanted my Grandpa’s (Irish, not French) gravestone to say: The kindest man.

That’s it. The kindest man. I told her it was perfect, because it was. It is. And then that was that. We hung up and went back to whatever we’d been doing.

Just as a late night phone call from grandparents might alarm someone, so might having a conversation like this, randomly discussing matters of death on a casual Sunday night. But again, this didn’t throw me. As a family, there aren’t a lot of things we shy away from and won’t talk about.

Just last summer we were passing around my grandparents’ future urns at a family dinner. It’s not as weird as it sounds – my great uncle in Calgary is a talented wood worker and makes many beautiful things, including urns, and my grandparents wanted a set, so he delivered them when he was in town last summer. A bunch of us gathered around admiring these urns, and when my Grandpa went back out onto the deck he chuckled and lightheartedly said he’d just been checking out “his next home.” We laughed because it all seemed so impossibly far away.

Even on February 12 when my Grandmere called me, the idea of my Grandpa’s gravestone was still all theoretical. By that day, cancer was already spreading throughout his body, we just didn’t know it yet. But even though we didn’t know it, and even though it all still seemed so far away, there was no doubt that, “the kindest man” were the perfect words by which to remember my Grandpa. One day.

That one day came a lot quicker than anyone expected. He died last Wednesday, April 12, 2017 and yesterday we said goodbye to the 87 years young man with a heart of gold.

My grandpa really was the kindest man.

He was so many other things, too. Patient, hard-working, humble, accepting, generous and loyal. But his kindness is what set him apart.

Growing up it seemed like Grandpa was always off helping someone in the community. My mom would call their house on a Saturday or Sunday and he wouldn’t be home because he was volunteering at the food bank, serving hot meals on the downtown eastside, or helping refugee families adjust and get settled. I remember in grade two or three talking about him in class when we had to give examples of being a Christian witness. Even then, even without knowing the half of everything that he did for other people, I knew that I was proud to be related to such a kind person.

I don’t think any of us know just how much he did for other people, because my Grandpa was incredibly humble. He never made a fuss over anything he did. He helped without expecting anything in return. He didn’t want any recognition and he never made anyone feel like a burden, rather he made it seem as if we were doing him the favour by asking for his help in the first place.

There was no question that we could count on Grandpa when we were in a bind. When I was twelve I had a dance competition out in Abbotsford in the middle of a school day. After having no luck finding me a ride, my mom called her dad and asked if he could help. He didn’t say yes or no. Instead he answered with, “I love Abbotsford.” Even though it meant over four hours of driving for him, he didn’t hesitate to help out. He made it sound like he’d been planning on going to Abbotsford all along.

My Grandpa had a song for everything. He was always singing songs from before my time, especially mid conversation. One of his favourite songs to sing to us grandkids when we were in the hot tub was “Tiny Bubbles” and I think I was 18 before I realized that it wasn’t actually a sweet love song but rather an ode to wine. Still, I think it will always be a love song to us.

I could go on forever with stories of my Grandpa. And I’ve only been around for the last 25 years of his 87 years of life. I can’t even scratch the surface of the depth and meaning of the life he lived, and more importantly, of the lives he touched.

But I think the best testament to the wonderful person that he was goes back to my conversation with my Grandmere on February 12. When she told me that she wanted him to be remembered as the kindest man, we didn’t even know he was sick. This isn’t just how he will be remembered, but this is how my Grandpa was talked about his entire life. This is exactly how he lived his life and how he made his mark on this world. With kindness.

Recently my mom was on my Grandpa’s computer resetting a password for an online account, and when the email came through with the link to reset it, it also contained a secure phrase, a phrase my Grandpa had come up with himself as a second safety measure for this account.

The phrase he wrote was: I love all my family.

We know, Grandpa. We never doubted it for a second. And we all love you, too.

My siblings and I spent most of our childhood in costume…it appears to be an inherited trait!

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.