Life, reality and fairy dust

I get a fair amount of emails and messages from people wondering what my secret is, where I buy my fairy dust. They want to know how I manage to be bright and cheery when things in my life are on the stormy side.


You want to know how I always stay so positive?

I don’t.

You guys, there is a reason I haven’t written a new post in almost a month now, and it’s not because I’ve been off gallivanting. It’s because I’ve been in a bad mood for pretty much three weeks straight. It’s because I’ve had nothing to write beyond “I’m really bummed out and everything sucks” and I know I can keep it real here, but I like to think I’ve set a higher standard on this page than a seven word post.

I’ve just been frustrated lately. Discouraged. Defeated. And did I mention frustrated?

It started when I found out that I’m looking at a 12 to 16 month wait for a follow up appointment that was supposed to happen last fall, plus another referral that was supposed to be put through in December never actually went through. Next I learned my extended health won’t cover something because I have Ehlers-Danlos Syndrome and not arthritis. After that the government deducted from my disability payment for no clear reason. Then my car died beyond repair. There is also the issue of my most expensive medication no longer being covered and even after four hours on the phone and six retellings of the whole situation, it’s still up in the air.

Plus of course there are some new symptoms, some worsening of other symptoms and some more baffled looks from my doctors.

And I’m really struggling lately not to feel angry and let down by the healthcare system here. I hate when I feel like this because I really do believe in the idea of universal healthcare, but it’s hard when people in other countries, and actually even in other provinces across this country, don’t seem to have to fight as much and wait as long as you do. It’s even harder when they have access to services and treatments that are unavailable to you altogether.

Life has just been a little too much lately and I haven’t had the energy for anything extra so I’ve kind of been hiding out.

It’s called turtle time. At least it is now. Patent pending.

And there’s my negative story for you.

Here’s where it starts to turn around.

Before I continue, you should probably know that I have this random interest in random holidays. It’s not uncommon for me to text someone along the lines of, “Happy Day After New Year’s Day (observed – New Zealand)!” or, “FYI it’s Showa Day in Japan today.” I love learning what all these different days are about and how they came to be.

A while back I was texting with my bestie about upcoming Earth Day, except that Earth Day was auto-corrected to warty day. Kind of gross, sure, but we thought this was hilarious and so then of course we said we will have to recognize warty day, too. When Holly asked me when it should be I randomly yet officially picked May 5. I later realized this was already Cinco de Mayo (duh) and less obviously also Children’s Day in Japan, but official is official.

By the way guys, we know we’re really weird. Just go with it.

Yesterday morning, I texted Holly to wish her a Happy Warty Day, which of course is not a significant day at all except for the fact that it made us laugh. I asked her what her plans were and if we could celebrate. Thursday is often her only day off all week, and the only reason she never works on Thursday is because she volunteers overnight at the crisis line, so when she told me she also had an appointment yesterday afternoon but could pop over after, I almost said no.

All of my “don’t be a hassle on anyone” chronic illness instincts told me to just say never mind, but my “I’m having a tough time” human instincts told me that I really just needed my best friend to make things better. Remembering that my focus on the word branch this year includes reaching out even when I feel like hiding, I said yes.

IMG_4860So Holly drove over to my house, and since we both adore baby geese, we popped Julio (my wheelchair) into her 1998 minivan (just to give you an idea of how cool we really are), and we drove to a nearby park to see the goslings. The scenery, weather and company were perfect. Plus the goslings were fluffy, clumsy and adorable. It was the most wonderful Warty Day there ever was. It was also the only Warty Day there ever was, but still.

I don’t have a magic answer for how to stay positive, but this story is the closest thing I have to some fairy dust for you right now.

I am most certainly not full of sunshine all the time, not even close. Honestly, I don’t even think that’s healthy, let alone possible. It’s not real, and forcing it gets in the way of genuinely living it. I think you have to feel it all, the good and the bad, and I think that hope is found in spite of the bad, not by pretending it doesn’t exist.

IMG_4858The bad exists. I know because I live through it and so do you. Everyone does. We have no say in that. But I think maybe we’re able to live through it because of what we live for, and that we have some say in.

I live for random made up holidays that come into being because of texting typos, no matter how dermatologically unappealing their names are. I live for gushing over baby geese. I live for hanging out with Holly and Julio, and I live for delighting over the realization that even though I didn’t plan it, their names sound superb together.

I live for all sorts of tiny little things, and when I need to, I let these tiny little things become everything.

It’s not a perfect plan, but it’s all I’ve got for now. There is no perfect plan. There’s just life. Life and reality. And tiny little things that turn into bits of fairy dust.

It’s not perfect, but I’m hoping it’s enough anyway.




When you know someone who can’t eat

Alright friends, I have one last post for Feeding Tube Awareness Week! My previous two posts this week talked about what it’s like when you can’t eat, and today I’m talking about what to do when you know someone who can’t eat.

To recap, as many of us with feeding tubes know, we live in a very food-centric society, a fact that becomes painfully obvious when all of a sudden you find yourself unable to eat like everyone else. Think about it — family dinners, lunch with friends, coffee dates, dinner dates, picnics, treats at the office for someone’s birthday, happy hour, Halloween candy, wine tours, chocolate on Valentine’s Day, Thanksgiving dinner, meeting for drinks, juice cleanses, summer barbecues, going for ice cream, wedding toasts, cheers-ing. As a society, our social lives are built around food.

For those of us who are unable to eat, we don’t want to miss out on everything, but it can also be really awkward to be surrounded by food all the time. And for those of you who are able to eat, it can be awkward to know how to include us. There are many different reasons for someone to need a feeding tube or be on TPN, so it’s not a one-size-fits-all situation when it comes to having a friend or loved one who is unable to eat, but here are some basic guidelines on how to approach it.

For starters, whenever possible, try to hang out with us in a way that doesn’t revolve around food. Many of us with feeding tubes are dealing with chronic illnesses that leave us short on energy, so low-key activities are great places to start. Think movie afternoons, coloring parties and craft sessions. We also likely spend a lot of time going to appointments and running boring medical errands, but your company can make these tasks a little more exciting.

As for the rest of the time when food is a focus?

Respect our restrictions. Sometimes “just one bite” really can be a problem. If we say “no thanks” or turn down your offer, it’s not personal, it’s self-protective. Please don’t keep encouraging us to try something, because we might feel pressured to please you but then end up suffering consequences later.

Keep inviting us. Acknowledge that we might not want to join in, and try not to take it personally if that’s the case, but please keep giving us the option. Not being able to eat while everyone around us eats is hard, but missing out and not being invited at all is hard, too.

Shift the focus. When possible, create a situation where food isn’t the only focus. For example, if it’s warm enough outside, eat dinner on the deck so we can enjoy nature and have lots to look at rather than not knowing where to look while everyone else at the table is eating.

Let us take the lead. Don’t make it a requirement that we sit at the table while everyone is eating, and if we choose to leave the room, let us be. We may need to leave the room if the smells are strong or our symptoms are acting up, but we also may need to leave the room if we’re having a bad “I really miss food” week and we just can’t stand to watch you eat our favorite meal.

Enjoy your food. And don’t feel bad for doing so! In fact, we want you to enjoy what you’re eating because we would give anything to be able to eat it, too. There’s no need to apologize for enjoying your food…please don’t take a taste, look at us sympathetically and then say “I’m sorry, but this is so delicious!” All that does is draw attention to the fact that we’re not eating and remind us that we’re missing out. Feel free to exclaim over your food all you want, but the apology isn’t necessary.

Resist the Q and A. Avoid questions such as, “Is this just torture for you?” or, “Oh man, I would just die if I couldn’t eat! How do you do it?” while you’re eating in front of us. One, it likely is slightly torturous. And two, if it’s not torturous, that’s because we’ve managed to focus on something other than food, and we don’t need you to keep reminding us of it.

Our illnesses are not enviable as weight loss strategies. Joking that you want our condition so you won’t eat so much or so you can lose weight is not funny, it’s insensitive. Usually when people say things like this they are trying to make us feel better, but it usually just makes us feel misunderstood.

Appreciate. Appreciate your food. Appreciate your body. Your body can take the food you eat, digest it and turn it into fuel, all without making you sick and miserable. Do you know how incredible that is?! Now and again, take a second to recognize how totally cool it is that your body does what it’s supposed to do.

Basically just carry on as usual and don’t draw attention to the fact that we’re not able to eat, because I can guarantee you, we are well aware of it already! Asking questions and trying to understand how it all works and how it all feels is fine, and honestly appreciated much of the time, just try and do so at a time and place when it won’t single us out as the only one not eating.

One last thing! Thanks for loving us. Thanks for reading this. Thanks for trying to understand us a little better. It means more than you know.


Patient’s Orders

I have this really awesome friend who is in the second year of her Master’s program to become an OT. She’s kind, smart, funny, creative, compassionate, encouraging and determined. She is the kind of person I would want looking out for me or someone I love, and I can tell you without a doubt that she is going to be an excellent OT. The relevant part here is that she is training to be an OT…as for the rest of it? Well, I just couldn’t resist the opportunity to brag about my friend a little!


Anyway, this letter was inspired by a Friday evening chat with this very awesome friend of mine who was very understandably feeling drained after a long week at an oncology and hospice placement.

To all those overwhelmed healthcare providers out there…

…and I’m not just talking to doctors and nurses, I’m talking to all of you…PTs, OTs, SLPs, dietitians, social workers, child life specialists, pharmacists, techs, paramedics, counselors and all the other professions that I can’t think of off the top of my head! Some of this is probably relevant to teachers, too.

Maybe you’re relatively new to this and it’s still a shock to your system. You haven’t yet become desensitized to all of the pain, struggle and loss your patients are facing. Or maybe you’ve been doing this a long time and have become used to it. Maybe you feel like your job is hopeless or maybe you feel like it’s full of hope. Perhaps your experience even changes day to day, week to week.

I’m not one of you, so I can’t really understand where you’re at or how you’re feeling.

I am, however, one of your patients, and there are a few things I want you to know.

We patients talk a lot about our ‘teams’ of health care providers. I don’t think I know any patient with a serious illness or disability who hasn’t mentioned their team. You are part of this team, but since you’re on the front lines with us, you don’t really get to hear the way we talk about all of you, our teams, to other people. Oh, but I wish you did! Sure, there are always a few bad eggs, but for the most part we talk about all of you with respect and admiration. We talk about how much we trust you, how you changed our lives for the better, and how we’re just so grateful that you gave us the gift of your time. We appreciate you, and everyone who appreciates and loves us, in turn appreciates you.

Even when our interactions are fleeting, even if you don’t have a permanent spot on the team, you still play a part. For every uncomfortable or frightening situation we face, we talk about the people who made it a little easier. That was a really painful procedure…but the nurses were so gentle and reassuring. They woke me up at 5:30am to take blood…but the lab tech was really funny and made me laugh. I’m really scared in the ER and they don’t know what’s wrong with me yet…but they’re taking really good care of me. You are the ‘they.’ Even if we never see you again, we still appreciate you.

When we are facing unimaginable situations and seemingly insurmountable obstacles, that is our reality whether you are our healthcare provider or not. But here’s the cool part – you have the ability to help us face them. You have the power to make a terrible situation a little bit less terrible. We don’t want you to become all consumed with our problems, we just want you to do what you reasonably can to help us through them.

You becoming weighed down helps no one. Becoming desensitized is not necessarily a bad thing; it can make you better at your job. It’s in the best interest of you and your patients for you to be able to leave work at work. Please, don’t ever feel guilty that you get to go home and take a break from your job while we don’t, because we want you to go home.

Actually, we need you to go home, so that you can come back and care for us again. Clear your mind, enjoy your evening, see your family, watch your favourite show, do whatever you do. Live your life. That is what makes you able to show up at work the next day as the best version of yourself, able to do your job in the best way you know how. Taking care of yourself is actually one of the best ways you can take care of us, your patients; sometimes putting yourself first and putting your patients first is synonymous. We want you to advocate for your own health and well-being because we need your help advocating for our own.

One of our greatest wishes is for you to recognize that we are people as well as patients. We have diagnoses, prognoses and medical histories, sure, but that is just part of who we are. We are whole people still, and even if we don’t always remember so, we know that you are whole people, too. You are not only doctors, nurses, OTs, PTs…the list goes on and on. That is one part of you, and it’s a wonderful part of you, but it’s not your entire person. And that’s not a bad thing.

So as one of your patients, thank you for everything you do. Thank you for making taking care of me part of who you are.

Now go take care of yourself, too! Patient’s orders.


P.S. No, my signature is not that illegible! I had another copy of this with my real signature on it…but then I started to worry about if I lost my credit card and that person found my signature on here and buried me under thousands of dollars of debt. Yikes!