Socks and sandals…oh, and empathy, too

Let’s talk about shoes. Other people’s shoes. And empathy.

Actually, let’s start with a story.

Last Wednesday was Canada Day. A friend of mine who lives near a park that puts on a fireworks show every year invited me to come over, crochet, watch the fireworks from her balcony, and then crochet some more (wild, I know).

“Sure!” I said, “I’ll bring the alcohol (swabs)!”

I didn’t actually say that, but I did say I would try and come. For whatever reason, be it medications or temperature or just randomness, I’ve been having really brutal headaches the last few weeks and Canada Day was no exception. For the majority of the day my head hurt too much to move yet I was also too nauseous to sit still. Quite the dilemma. Thankfully, though, by 8 o’clock my meds were working and my TPN was going so I rallied and headed out. And because I have a central line, I really did bring alcohol swabs!

I soon found myself at a roadblock. Literally. Some of the streets were blocked off to keep people from parking where they weren’t supposed to but I had been warned about this. Residents were of course allowed through, and since in past years visitors had been allowed through, too, I rolled down my window, told the police officer that I was going to a friend’s house and gave him the name of her street.

“Sorry,” he said, “we can’t let anyone through without identification and proof of address.”

Bummer, but considering how much effort it takes for me to leave the house I wasn’t ready to give up just yet.

“I understand,” I said, “but I’m not looking for free parking. My friend Lisa really does live at [insert address]. I’m hooked up to an IV here (pointing to central line) and I’m honestly just going to sit on her couch and crochet (pointing to giant ball of yarn).”

But alas, no luck. “Sorry. You can’t get through.”

I sighed and then turned around and headed home, my alcohol swabs unopened and my yarn un-crocheted.

The end.

At first I was disappointed because I was looking forward to a nice evening with my friend. Then I was annoyed for a few minutes. And then my thought process went something like this…I wonder if he would have let me through if I said I was going to knit instead of crochet…maybe I would have had more luck if I had started crying…note to self: learn to cry on demand…perhaps I just look really suspicious and up to no good…that’s probably it, I probably just look really hard core.

And just in case you’re curious, ladies and gentleman, this is apparently what the suspicious-up-to-no-good version of me looks like:

Suspicious-up-to-no-good-me

Now if that’s not hard core I don’t know what is.

In all seriousness, though, I couldn’t really be annoyed because the police officer was just doing his job. And even if he had bent the rules before, I decided to put myself in his shoes and think about why he maybe wouldn’t bend them for me. I was able to imagine up at least a dozen reasons to explain the bee in his bonnet. For one, even though he wasn’t wearing a bonnet maybe he really had just been stung by a bee. Maybe he was recently broken up with by someone who crochets. Maybe he was hangry or dehydrated. Hey, maybe he even has undiagnosed POTS and was feeling really sick standing outside in the heat. Or, perhaps he was just bummed out that he had to work on Canada Day.

Who knows, but by the time I got home I wasn’t annoyed anymore and I actually found myself feeling a little sorry for the police officer! Sure, I wasn’t able to end up hanging out with my friend, but he was potentially a recently dumped guy with a chronic illness who was desperate for food and water and had just been stung by a bee. Sounds like a pretty bad day to me. And even if none of that was true, at least I was no longer annoyed!

If anything, I was grateful to be in a good enough mood that the situation didn’t really phase me. Without a doubt, my reactions vary depending on what else is going on in my life. Had I been over-tired that day, I might have unintentionally burst into tears or let him ruin my night. If my own responses can vary so much day to day then of course the responses of other people can, too.

This Canada-Day-Almost-Adventure is a somewhat silly example, but I really do believe in giving other people the benefit of the doubt. It helps me to let go and move on. It keeps me from wasting energy being upset and turning small conflicts into all-consuming grudges. And it lets me save my energy for battles actually worth fighting. A little bit of time in someone else’s shoes often saves me a lot of time stomping around in my own.

So why not try putting ourselves in each other’s shoes now and again? In a perfect world we would always treat everyone with kindness and respect and never let our emotions or personal problems negatively impact the way we interact with each other. But this isn’t a perfect world. Plus we’re humans, not robots. We have unique experiences, fears, dreams, insecurities, and burdens, all of which shape the soles of our shoes. The only way to understand what someone else’s footprint feels like is to have some empathy and spend a little time wearing their shoes.

I’m going to leave you with a little style tip: you can even justify socks and sandals in the name of empathy. It turns out that making an effort to better understand each other trumps any major fashion faux pas.

Socks and sandals for the sake of empathy

Check out those toe socks…I don’t know about you, but empathy is looking pretty fun to me!

Have wheels will travel

Sometimes I use a wheelchair. See?

Have wheels will travel

I’m just kidding. Well, I’m just kidding about the motorcycle. Sometimes I really do use a wheelchair. And sometimes I make my mom haul that wheelchair on to the back deck for a photo opportunity. See?

Have wheels will travel...for real

I have dysautonomia and because of this, oftentimes I cannot stand up or walk around for very long without an inappropriately fast heart rate, an abnormal blood pressure and a whole host of very unpleasant symptoms.

If you’re confused or curious and want to know a little bit more about dysautonomia then I wrote this appendix/addendum/supplement/whatever for you. And if you’re satisfied with that brief description, great. Carry on reading.

One of the challenges of dysautonomia is that I never know when this barrage of unpleasant symptoms is going to hit me. I might think I’m okay but then a few minutes later find myself in quite the pickle…like the time I was trying to buy yarn and ended up having to leave the store empty-handed because I couldn’t stand in line and then I had to hang out in my car with my feet up on the dashboard for a while until I felt steady enough to drive home…or the time I had to crouch down to the floor of the library and pretended to be really enthralled by the books on the bottom shelf so that people wouldn’t think I was awkwardly waiting to start a game of leap frog.

As you can probably imagine, this can make going out in the real world and doing normal things like standing and walking very difficult.

So, sometimes I use a wheelchair.

After I was discharged from the hospital in November, except for going to appointments I really didn’t leave the house. I couldn’t leave the house. By March it was clear that things weren’t going to magically get better right away so I asked my family doctor to write me a referral to borrow a wheelchair from the Red Cross.

Honestly, I think this whole wheelchair thing has been harder for other people in my life to accept than it has been for me. Thinking about me in a wheelchair has made some people feel really sad and sorry for me. Other people, understandably so, have been caught very off guard when they’ve run into me using it.

But the thing is, I don’t feel sad about it and I don’t feel sorry for myself. It was actually an easier transition to make than you might think. I read an article once on the subject of how do you know when it’s time for a mobility aid? It stated that if you’re even considering using one there’s a good chance it’s already time and that seemed very logical and practical to me. As well, one of my closest friends is in a very similar health situation and she has been using a wheelchair for a while now. It’s allowed her to go out with her family and friends and to even travel a little. She really led the way for me. I saw what it did for her and I saw how gracefully she accepted it and used it to push past limitations instead of letting it become a limitation.

I wanted that. I wanted to be the one in control. I wanted to have some freedom despite my symptoms, not be limited because of them.

So I decided to give it a go. I haven’t used the wheelchair that much yet because it’s an old clunker that weighs about a thousand pounds and I’m not able to lift it in and out of the car by myself. Plus even if I could lift it, I still wouldn’t want to go anywhere on my own because the brakes don’t really work, the wheels have next to no grip and it’s not the right size for me so it’s a bit awkward to maneuver myself. But still, borrowing it was such a great decision! Ironic as it may sound, using a wheelchair has given me some freedom. Now that I know what a positive change it can make in my life, I am starting to jump through all the hoops required in order to get my own (SO many hoops…a story for another day) so that when I have to return this one in a few months I will still have that freedom. Hopefully I will have some independence, too.

I realize it might look like a step backwards, but I don’t see it that way. In the bigger picture it’s a step forward, an opportunity. It’s a good thing. So please, don’t feel sorry for me. There is no need for that. Celebrate with me instead! Be happy that I am finding ways to make this life work for me. There are a lot of things I didn’t think I could do anymore when really I just couldn’t do them on foot. As it turns out, though, there is more than one way to get around.

So to anyone else who is feeling stuck, maybe it’s time to try a different mode of transportation. Find some wheels and come roll with me. If you’re feeling trapped by circumstances beyond your control, if you’re feeling like you just can’t keep up with the world around you, or if you feel like you’re straight up headed in the wrong direction, come roll with me. Grab your wheelchair, bicycle, IV pole or rollerblades. Skateboards, wagons and golf carts are welcome as well. And if you’re really cool maybe you can find one of those soap box derby cars. Any metaphorical wheels will do!

Maybe we can’t take the path we planned on, but we will find another route. And wherever we need to end up, we will get there.

What’s that saying? Have wheels will travel?

Alright then. Let’s roll.

Everyday advocates

March was all about the word ‘advocate’ for me. I took matters into my own hands and got myself a cardiologist appointment…

Let me just interrupt that train of thought for a second. If you are curious about how that cardiologist appointment went click here or go to the top of this page and click on the ‘connect with me’ tab.

Okay so my one word for March was advocate…

Sorry, another interruption. Just in case anyone is wondering what my one word for April is I’m not going to write a post about it because I have nothing interesting to say. My word is sleep simply because I haven’t been sleeping very well lately, mostly due to symptoms, and I’m trying to change that.

Okay. Once again, my one word for March was advocate! As such, I’ve been thinking a lot over the past month about what it means to be an advocate and I’ve come to the conclusion that being an advocate is a lot more relevant to everyday life than it may sound. It’s kind of a heavy word. On one end of the spectrum, when I picture an advocate I think of someone protesting at parliament or arguing on someone’s behalf with lots of yelling and threatening hand gestures.

Then on the other end of the spectrum I see all of us regular people going through our regular days and making regular decisions. A lot of times, though, those regular decisions have a positive impact on our life or someone else’s life and it’s then that we become advocates.

I worked hard to get myself in to see a cardiologist in March, but that’s not the only time that I advocated for myself. One day I decided that I would run my feeding tube every day for the next week. I can tell you that I felt miserable that week and that every day was a little bit worse than the one before.  I was counting down the minutes until I could take my next dose of anti-nausea medication and I was up until the wee hours of the morning with nausea that wouldn’t settle down even hours after I unhooked my feeds. But despite all of that, each day I would try again.

Why? Because I was advocating for myself. It sounds counterintuitive, I know. How does making myself feel miserable have a positive impact on my life? But it’s not just about the here and now. When I chose to try and run my tube feeds I was advocating for my future. In the long run, tube feeds are a much safer and healthier option than TPN, so I was trying to do what was best for me overall. Besides, if I never tried how would I know if things had gotten better?

After five or six days I gave up, and by giving up I was also advocating for myself. Instead of advocating for the possibility of a healthier future, I was advocating for a better quality of life in the present. I owed it to myself to try running my feeding tube, but I also owed it to myself to stop when the misery became too much to handle.

The thing about being an everyday advocate is that it’s not always straightforward and it’s not always consistent. Being an everyday advocate is about looking at the bigger picture and considering multiple factors, factors that change in importance over time. Sometimes ‘what’s best’ can change even moment to moment.

I am an advocate for myself when I choose to eat something and let myself enjoy the simple pleasures in life even though I know it will likely make me sick later, just as I am an advocate when I choose not to eat something knowing it will avoid triggering my symptoms. I am an advocate when I choose to socialize with my family and friends knowing that all the talking and laughter is going to make me happy but leave me with a pounding headache, nausea and dizziness, just as I am an advocate when I choose to miss out on the fun knowing that I will be in better shape to do what I need to do later. Fun now, pay later? Or discipline now, easier time later?

Like I said, it’s not straightforward. Neither decision is the ‘right’ one, as it depends on other circumstances at the time. And both options have their downside. Every decision we make has negative outcomes so it kind of seems like we can never win.

But here’s the cool part: every decision we make has positive outcomes, too. We have so much power to put so much good into the world. We have the ability to advocate for ourselves and for those around us every single day. We have the chance to make our own lives and the lives of those around us better. Every single day.

I know it sounds obvious…duh, of course our decisions affect our lives…but I guess I lost sight of how much control I actually have. For someone living with an illness where it feels like I have no control whatsoever, that’s a pretty powerful reminder. I can’t control my illness, but I can be an advocate for a quality of life despite it. Every day I get to be that advocate. And it’s not just me, it’s all of us. As hard as we may try, there are so many things in life that we cannot control, but every day we get to choose to try again, to start anew, to reach out and to carry on anyway. Each of those choices is a chance to be an advocate.

It’s a big responsibility, but it’s also a big opportunity, and I’ve also been a glass half full kind of girl.

Opportunity it is, then.