Room for reality

It’s not a secret that I’m an optimist. I look for the good in everything and everyone, and I always try to give other people the benefit of the doubt. I believe in the power of positive thinking, especially when it comes to living day in and day out with a chronic condition.

I am also a realist. I like to be aware of and prepared for all possible outcomes, and I don’t hide away from the parts of life that are messy or uncomfortable (except for the dentist…I really need to make an appointment…). And as a realist, I believe that positive thinking can sometimes be hurtful, too.

Just hear me out…

One of the hardest parts about living with a chronic illness is grieving your old life and accepting your new normal. It’s an ongoing process and I still have days, or even weeks, when I’m totally just bummed out by my life.

What makes this process even harder, though, is that the rest of the world has a hard time accepting that a chronic illness isn’t just a temporary thing. As humans we do not like to see each other suffer and we do not like to feel helpless. We just want to be able to say something, anything, to support each other. As such, those of us with chronic illnesses hear a lot of various forms of the following:

Don’t think like that, you never know what will happen!

Just stay strong and one day this will all be behind you!

Things are going to turn around for you, just you wait!

You’ve just got to stay positive and things will get better. I can feel it!

(And a personal face palm favourite of mine) You’ll be eating [insert delicious food here] before you know it!

I know that when people say things like this they are coming from a place of genuine care and concern. I know that, and I appreciate that, but hearing things like that is when positive thinking becomes more hurtful than helpful. While we are just trying to come to terms with the fact that our lives will never be the same, the rest of the world is trying to encourage us by convincing us that it’s all just temporary.

I can clearly remember feeling caught in the middle like that in the weeks after my NJ tube was pulled. It became clear to me quite quickly that I was probably going to need a more permanent feeding tube. Of course I was hoping for the best but I was also trying to prepare for the fact that my life was about to drastically change. The problem was that no one let me say so; whenever I mentioned it I was told not to go there and not to give up. I was told that if I just kept fighting I could get better. The rest of the world was not ready to face my reality so I had to face it alone.

Without a touch of realism, optimism can do more harm than good for people with chronic conditions. We start to doubt ourselves and think that maybe we’re just not trying hard enough. We try to keep our expectations in check with reality, but then we start to wonder if we’ve confused being realistic with being pessimistic, and if doing so is keeping us from getting better. So we put on a smile and we pretend to be positive when really we just feel isolated. We’re still going to worry about the future, but we’re going to be alone with those worries.

It needs to be okay to talk about reality. Hope for the best, absolutely, but it also needs to be okay to prepare for the worst. And here’s the thing: when we are honest and upfront about less than ideal, yet realistic, outcomes, when we get the chance to really wrap our heads around them, we are able to fight harder to avoid them. Making room for reality does not make us lesser patients or lesser people, but it does make us better advocates. It makes us stronger and better prepared to face whatever life deals us next.

Optimism and realism are not mutually exclusive. The way I see it, reality exists whether we acknowledge it or not. Think about it like a room. Reality takes up a certain amount of space in that room. When we try to ignore reality, we end up feeling isolated, doubtful, confused and worried. All of a sudden we have these negative emotions taking up space in that room, as well, which means we have less space for optimism and the good things in life. When we acknowledge reality, however, when we face it and let it exist in our lives, we rid the room of those negative emotions and we end up with extra space!

I’m an optimist, but I’m also a realist. In making room for reality I ended up with that extra space!

So I choose to fill it with joys and silver linings.

And I have reality to thank for that.

Joy jar

Let’s be more like babies

Yesterday afternoon I had an appointment with my TPN team at St. Paul’s Hospital and it just so happens that my cousins and their new baby live only a few blocks away from the hospital which means that before my appointment my mom and I were able to stop by for some baby cuddles (and smiles!) which was very fun.

This might sound strange but I found myself really relating to baby Nora. I’ve joked for years that having gastroparesis makes me like a baby in many ways…I don’t do well with solid food, my symptoms are best controlled when I stick to a routine, and everything is worse when I’m tired. Then there are all the similarities between having a feeding tube and being a baby…formula, feeding schedules, liquid medications. Plus just yesterday my dietitian suggested I take Vitamin D drops, the kind that babies take.

Anyway, when we showed up Nora was awake and alert. She smiled a little bit and was really engaged for a short while before she fell into a deep sleep. My mom and cousin started talking about how much energy it takes to grow as quickly as babies do and also how much energy Nora used up being so interactive and engaged for even just a short while. No wonder she was tired.

And then that’s when I had a bit of an ‘ah-ha’ moment.

Simply having a chronic illness and battling with your body all day long leaves you short on energy to begin with. Because of that, I think I notice more clearly and feel more deeply just how much energy day to day life requires. But you don’t have to have a chronic illness to get tired from interacting with other people, concentrating for long periods of time, and keeping on top of everything you have going on. I think we underestimate just how much energy keeping up with life requires.

Since being sick I have a whole new understanding of what tired feels like and try as I might to ignore the fatigue, I don’t have long before my body protests, my symptoms pop up out of nowhere and I have no option but to rest. I don’t have the choice of just pushing through anymore, but I can clearly remember doing so on a regular basis.

I remember back before I was so sick I was always ‘busy.’ When people would ask me how things were going, I would say busy. Busy but good. Busy and tired. And I mean I truly was busy and in involved in a lot of things but it was almost as if being busy and tired was a sign of success. Being tired was a good thing because it meant I was working hard. I would come home from a full day of classes and an evening teaching dance, acknowledge that I was tired and then spend several more hours that night studying anyway. I felt like I had to. Being tired didn’t seem like a good reason to take a break; being tired was more like a constant way of being.

Think about it. I bet you can think of multiple times in just the last week where you were tired yet you ignored it. Maybe, like me, you got irritated with your body for not keeping up. Or maybe you thought you didn’t have enough time to be tired.

But here’s the thing: being tired is not synonymous with being weak. It can be inconvenient and annoying, believe me! I get incredibly frustrated that I don’t have the stamina or energy to do all the things I want to do, but I’m not a lesser person because of that. Being tired is not a character flaw. It’s just a sign that your body is doing the best that it can but that right now it needs a break.

And there is no shame in taking that break. When babies are tired they fall asleep. As far as I know they don’t shame themselves for not being able to keep their eyes open or hold their heads up. Now, I know we’re not babies and that as adults the expectations are different…for example, babies are allowed to fall asleep anywhere whereas for adults it’s not okay to fall asleep in the middle of a meeting at work. Or behind the wheel. It’s also generally not socially acceptable to fall asleep mid-conversation or in the arms of someone you don’t know. And if you’re doubling your weight within a matter of months you should probably get that checked out.

Still, I think we can take a cue from babies. I think we can let ourselves rest more easily.

Of course there are times you have to push through and of course there are times when being tired is worth it. I’m not promoting laziness but I am proposing balance. Being alive is awesome. Learning new things, meeting new people and seeing new places? These are awesome things! But being alive can also be tiring whether you are two months old or fifty years old. That’s just the way it is.

So you know what else is awesome? Letting yourself take a break when you’re tired. If you don’t know how to do this take a look at Nora expertly demonstrating how to take a break.

Nora cuddles

Now doesn’t that look like fun?

Your turn. Because you know what else is awesome? You are. And awesome people deserve a break.

Dear…?

For the month of March themighty.com is asking readers to write a letter to their illness or disability. So I wrote one. And then they put it on their website which is kind of fun! Here’s what I wrote.

Dear…?

Well, actually, I don’t know what to call you. I could call you Gastroparesis, but that’s just your first name. I’m still trying to find out what your last name is, how many middle names you have. My digestive system wasn’t enough for you so you’ve taken up residence in other parts of my body as well. You don’t have an official name yet.

But name or no name, the struggle is the same. You make every day a challenge and you make being alive more complicated than it should be. I can’t eat because of you, so I eat through a tube in my abdomen and a central line in my bloodstream. I take medications to help my body do the things it has lost the ability to do on its own since you showed up.

There are so many things I hate about you. I hate that you make me doubt myself and doubt my instincts. I hate that nothing in my life can be spontaneous. I hate that I can’t just have fun without paying you for it. And I hate that no matter how hard I try, no matter how carefully I track you, and no matter how conscientious I am, you still surprise me, exhaust me and leave me confused on a daily basis. Thanks to you I had to give up a job that I loved. Thanks to you I had to drop out of university. Thanks to you I spend more time with my doctors than I do with my friends. And thanks to you I watch those friends move on without me and achieve the very same goals I’ve had to set aside.

But thanks to you I’ve made some new friends. I have met so many wonderful people because of you. Doctors and nurses, yes, but also fellow patients and kindred spirits. I’ve learned that shared experiences can bring people together in a way that overcomes the geographical barriers keeping them apart. I’ve been lucky enough to find my tribe. They have given me unconditional support and I’ve learned how to offer that support in return.

On the one hand, I kind of hate what you’ve done to my family. I hate the stress, the worry and the helplessness they feel. You haven’t just taken away my freedom; you’ve taken away some of theirs, too. But on the other hand, what you’ve done to my family is kind of beautiful. You’ve strengthened our connections and you’ve given us a lot of opportunities to be there for each other when we are most vulnerable, which is also when we are most honest, when the knots are tied the tightest. Throughout the past five years I have never felt more discouraged, frustrated, tired and lost, but I’ve also never felt more loved. I know that’s because of you.

You’ve caused me a lot of hurt. I grieve my old normal all the time. I grieve the me who was always on the go, who thrived at school, who was involved in everything and actively trying to make a difference. She was motivated, hard-working and full of energy. She was smart and she was going places. I liked her.

My new normal is different. The new me is quieter, but wiser. More tired, but more patient. The new me is better at giving others the benefit of the doubt and has a better awareness of the fact that everyone is going through something. She’s slower to judge and quicker to empathize. She knows how to ask for help and she keeps going no matter what.

And you know what? I like her, too. I miss the old me, and that hurts, but I like the new me, and that heals.

So how can that be? It doesn’t make sense that you can hurt me and help me, that I can hate you and appreciate you. There are more challenges in my life now, but there is also more joy. You’ve taken a lot from me but you’ve made me more grateful. How is that possible?

It’s possible because of what you’ve shown me: that there are two sides to every story. There are triumphs in every hardship and successes in every failure. There is good in everyone and everything, just as there is bad, too.

The thing is that I get to choose what I see. And if I look for the good, I know I will find it.

You taught me that.