When you can’t eat part two: the feels

Whenever someone asks me a question related to what it’s like not being able to eat, I usually shrug and say, “I don’t know, I’m just used to it,” and then change the subject.

I am used to it, but that doesn’t mean I like it or that I’m always okay with it. Not being able to eat can be really tough, but trying to put it into words is also really tough so a one sentence reply is just easier. However, I’m going to give it a go, here. Yesterday I covered the facts. The logistics. I talked about how it all works, not being able to eat. Time to delve deeper now. Today, let’s talk about how it feels.

First of all, I want to eat. I ate normally for 18 years so I know what things taste like and I have favourite foods. I get cravings and when I watch people eat I want to be eating, too. I know I’m part medical device at this point in time, but I’m still human, and as a human I’m hardwired to eat in order to survive. Not being able to is frustrating and sad, and that part never goes away, it just becomes part of your normal.

I cycle through different this-is-what-not-eating-feels-like phases.

There are times when it honestly does not bother me, when that frustration and sadness are easy to forget about. I sip on my ginger ale, I eat a lifesaver here and there, and I don’t really give it a second thought.

Then there are times when the absence of food in my life is impossible to ignore. Imagine going on a roller coaster that’s really fun at first but then you start to feel sick and you just want to it be over. Afterward you think “yikes, I don’t want to do that again.” Except everyone else had so much fun and wants to go again. You still feel sick and don’t want to feel worse, but you also don’t want to miss out on the fun, so you go with them once more. This time you have an even worse experience and so you decide you just cannot ride that roller coaster anymore. But everyone else is still having so much fun and they decide to ride it again. And again. And again. And you just have to sit there watching and waiting for them to stop riding the roller coaster. Yes, you are glad they are having a great time, but you feel so left out and it seems so unfair how something that is supposed to be easy and fun makes you feel so terrible. You hate your body for getting in the way of your ability to enjoy life. You’re stuck there just watching and waiting for everyone to get tired of that roller coaster, but they never do. Sometimes not being able to eat is like that, and during these ‘roller coaster phases’ I often find myself wishing I hadn’t gone to the theme park at all.

And then there are the in-between times. During these times I feel somewhat removed from it all, kind of like when you drive someone to or from the airport. You might think, “Oh I wish I was the one going away,” but it doesn’t really phase you that you’re not. Overall you’re just happy for your friend or family member who gets to go on an adventure. Except the thing is, when all you ever do is drive people to the airport without ever actually getting to take a vacation yourself it can be hard not to feel bitter. Lots of the time I don’t mind driving people to the airport, but I do get disheartened when I realize that I can go to the airport all I want yet I can’t ever actually get on a plane. Still, when I’m in this so-called ‘airport phase’ being part of the experience in some way, even if it’s just being along for the ride, is usually better than not being part of it at all.

The thing is, though, I wish I didn’t have to choose. I wish it didn’t come down to driving people to the airport or not spending time with them at all. I wish it didn’t have to make the choice to gather with everyone and watch them eat, or to not be part of the gathering at all.

But I do. I do have to make that choice because our social lives are built around food.

It’s one of those things you don’t realize until you’re on the other side, but 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.

Sure, I can be present for all of that, but it’s not the same as being part of it. I’m watching, not doing.

As a society we gather together around food. We celebrate around food. We sit around the table or cozy up with our coffee and tell stories, recount memories, and discuss topics of all different depths. If I want to be part of that then I have to put up with being around other people eating while I fight against the basic human instinct to do the same. And that sucks. I hate being the only one not eating, but I also hate missing out on anything. I don’t want to watch my friends and family eat food that I wish I could eat, but I do want to spend time with them.

It’s an impossible situation.

RCH TPN (3)I make a conscious and consistent effort not to think or talk about this too much for two reasons. One, I don’t want anyone to feel like they can’t eat in front of me or feel bad when they do. As hard as it is not being able to enjoy food like everyone else, it’s even worse knowing that they are enjoying it a little bit less because of me. I already feel a lot of guilt knowing how my health problems spill over into other people’s lives so the very last thing I want is for those people to have to adjust their lives for my sake even further. I don’t expect people to avoid eating in front of me and I think it would be unreasonable of me to do so. People gotta eat! I have to eat, too, I just happen to do so via my veins.

The second reason is that thinking about this all the time doesn’t help matters or change anything. Some days are harder than others, and some days the constant fight wears me down, but at the end of the day I try to be very accepting and matter of fact about it all. I can’t eat and that’s just the way it is. I can’t sing either. Or whistle. I let myself feel sad when I need to, I let myself lament sometimes that life isn’t fair, I stay away when I need to, and then I just do my best to focus my energy elsewhere. Life is hard enough without constantly thinking about how hard it is.

Now here’s where this sad posts gets happy. I don’t have food, but I do have people. Not only do I have awesome friends who also can’t eat and who understand what it’s like, but my friends and family who can eat also happen to be awesome. And not only do they understand when I don’t want to sit at the table with them, but they are just so delightful to spend time with that they make sitting at the table worth it. I would give almost anything to be able to eat, but I wouldn’t give up the people in my life.

Sure, I wish I lived in a world where I didn’t have to choose between food and people, or rather between being around people while they eat food and not being around them at all, but that’s not how it works. I do have to make that decision. When I lay it out like that, though, it doesn’t seem quite as impossible a choice to make. People with food or no people at all? People win.

I may not be able to eat, but I do have a reason to be at the table, and for that I am grateful.

Reason to go to the table

Sister, brother-in-law and brother. My all time favourite reasons for being at the table!



Health and happiness and peanut butter

I love Christmas (you’re all shocked, I know). I would give up birthdays for the rest of my life for one Christmas season. I have always loved Christmas, but the last few holiday seasons have come when I needed it most, when I really don’t know how I would have made it through if I didn’t have Christmas to look forward to.

Now, as much as I love Christmas, and as much as it’s helped me through those otherwise very bleak times in my life, Christmas has also brought with it some big letdowns…I mean come on, is a pony really too much to ask for? No but seriously, for the last few years, Christmas was also the time of year for facing up to the fact that despite how earnestly I had wished that by next Christmas I would be healthy, I still wasn’t.

Christmas is the time of year when the whole world sort of turns into a greeting card. I love a good dose of cheesiness as much as the next person. Actually, that’s a lie; I love a good dose of cheesiness more than the next person, but one type of holiday wish always contributed to the letdown…

Wishes for a healthy and happy new year!

Health and happiness to you and your loved ones this holiday season!

Blah blah blah healthy and happy blah blah blah!

Health and happiness join forces as a very common wish this time of year. They are kind of the peanut butter and jelly of the Christmas card world. Heck, I’m sure I’ve wished the pair countless times in the past. I’m a sucker for alliteration so I can’t help liking how they sound together, especially when you add the word holiday to the mix.

Yet, each year when I would write Christmas cards and wish people health and happiness, and each year when I would open Christmas cards wishing me the same, I was faced with the disappointment that another year had gone by and I still wasn’t healthy. And then I would once again spend the next year wishing and waiting for that magical holiday combination of health and happiness to find me. Basically, I was waiting for my life to turn into one of the made-for-TV Christmas movies I spent all day watching. But all that wishing and waiting and disappointment? It was exhausting.

I was really sick last Christmas. Well guess what? I’m still really sick. Sure I’m better in some ways, but I’m also worse in some ways. Mostly I’m just more used to everything so I’m a lot better at faking my way through it.

Bummer, I know.

But wait, it gets better.

This is the first year since I was first sick six Christmases ago that I’m not disappointed to not be healthier than I am. I spent all those years wishing and waiting to be healthier because I thought that I needed better health to make me happy. Here’s what I’ve come to learn, though – one does not depend on the other. Don’t get me wrong, being healthy and happy at the same time is wonderful! However, there are a lot of people in the world who are healthy and not happy. And there are a lot of people in the world who are happy even though they aren’t healthy.

I know because I’m one of them.

I’m not waiting to be healthy anymore. All that waiting was actually getting in the way of me being happy. I don’t need to be healthy; I can be happy anyway.

I am happy anyway.

Of course I would love to be healthy, too! Who doesn’t like peanut butter and jelly? And being healthy is definitely something to be happy about. But it’s not the only thing.

Now, don’t get the wrong idea here and think that being sick sounds like a good way to find happiness. It’s not like that. And it drives me crazy when people don’t appreciate their health and don’t take care of themselves, so if you start to throw your health away I will probably hit your head against the wall…except not actually because what if you got a concussion? Then I would be the one contributing to your compromised health and I wouldn’t want that. No heads against the wall then…instead I’ll just stare you down and I don’t want to brag or anything, but I do a pretty good stare down. But this is off topic…

Anyway, health is not the only thing to be happy about. Today I’m happy that my sister gave me some rolls of life savers. I’m also happy that I had enough energy to drive myself to go drop off a Christmas present for my favourite doctor. I’m happy that I got to spend some time catching up with one of my friends via text this morning. I’m happy that my cousin Nicole helped me pick colours for my next crochet project. Oh, and I’m happy that my favourite sweater was clean so I could wear it.

Happiness is about making all those little things you’ve got count for more than the big things you don’t. It’s about loving what have, not having it all.

Yes, peanut butter and jelly are a classic combination, and health and happiness together are lovely, but let’s be honest here, peanut butter tastes pretty damn good all on its own.

So to all of you wonderful people reading this, you make me happy. From the bottom of my heart, thank you for following along and being part of this with me. Wishing you a Merry Christmas and may your holiday be full of…

Peanut butter 🙂

P.S. No I didn’t eat the peanut butter! Yikes. The temptation was worth the photo opportunity!

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!