The Quarter of a Century Birthday.

I’ve made it.

I’ve survived what life has thrown at me.

For 25 years.

Woo.

I used to love birthdays – when I was a small kid. I mean, why wouldn’t you? Cake, presents, clowns, the whole rigamarole. The best.

Then I hated birthdays. Right as school started, no one was around to celebrate. Or they were, but I wasn’t yet assigned a locker for people to decorate… Not that there were many friends to decorate my locker. (That’s what happens when you’re a weird kid, or end up in the hospital for years, or go to a completely new school without social skills to make friends.)

A few years later, birthdays were awesome again. Frosh week, bars, classes hadn’t started – or I could crawl to a class that started at 2pm the next day (praying not to throw up). Everyone was back in town and ready to party. It was great.

But once more, birthdays sucked. My dad died 4 days before my birthday, and for the past 5 years, I hated that time of year. I also broke up with boyfriends around the same time, moved to another city, and then moved back, and didn’t have many people around to soothe the pain of getting older. Not so great.

This year… this year, though, has been a good one.

Even though I woke up, worried about the wrinkles that would suddenly appear on my face once I began rolling down the hill of old age (I checked – I’m safe, for now), it started off great. I rolled over to see the most amazing guy I could ever ask for who wished me a happy birthday before I could barely get my head off the pillow. He surprised me with a beautiful gift, and started my morning off right.

I ran to work, like every normal day, and was greeted with birthday wishes from my whole office, accompanied by special cupcakes just for me (but I shared, don’t worry.)

Then, I spent the evening enjoying some delicious food with my family. What more could you ask for?

I couldn’t get a picture of the family, though, because throughout the day, I kept receiving heartwarming messages from friends, past colleagues, old roommates, cousins, UO supporters, acquaintances, all wishing me a special day – so many, that my phone died. (I’m still getting messages now, as the night goes on, but I plugged it in!)

Maybe it’s maturity? I mean, 25 means you have to be mature, right? Or maybe it’s because, as the years have gone on, and I’ve been through so many things, that birthdays are really just about making it through another year. I mean, making it through 25 years is not something that I thought I could do. I don’t even think my mom, at one point, thought I’d make it this far.

But here I am.

As my dad would say, I’m “over the hill, feeling the wind in my hair as I roll down the other side.”

Here’s to 25, more. And then some. Right?

Depression and Chronic Illness

Ever since the news broke of the suicide committed by one of my childhood heroes, I started to formulate the blog in my head.

I knew I wasn’t going to write about how Robin Williams was an inspiration for me as an aspiring actor. Nor was the blog to be about how I always wished he could be my crazy uncle who sat at the end of the dinner table making wild, obscure gestures and jokes while we tried to eat. And I definitely was not going to follow the path of the rest of the content marketers on the internet who wrote about Williams just to get attention from the public.

No, this is about the bigger issue.

Reports have been circulating that Robin Williams committed suicide after suffering through the early stages of Parkinson’s Disease(1).

A chronic disease.

According to the National Parkinson Foundation, more than half of those who suffer from Parkinson’s Disease also experience clinical depression (2).

In fact, it is widely known that depression is extremely common in those suffering from chronic diseases.

As someone who has dealt with the ongoing pain and suffering of a chronic disease, this struck a chord with me.

I’ve never written about this topic before, and to be honest, I’m not entirely sure why. Maybe it was because it never really seemed important enough to talk about. Maybe it was because it was actually just hiding beneath the thoughts and words I was writing about other topics. Or maybe it was because it’s not something one just wants to talk about. Either way, today, I feel, is the day to bring it up.

Years ago, during the toughest part of my disease from the ages of 11-13, I was suffering excruciating, unending pain in my stomach, I was unable to eat, I did not have enough energy to sit up, and I spent most of the time in the bathroom. But, beneath all of the physical pain and anguish I was feeling, there was also something going on in my head. I would lie on my bedroom floor, stare into the mirror on my closet, and look at my pale, sick skin, deep into my grey, glassy eyes, and say out loud to myself that I wished it would all be over.

While I was never officially diagnosed by a clinician, I feel as if I can safely say I was depressed. The Crohn’s and Colitis Foundation, (now known as Crohn’s and Colitis Canada), has reported that people with Crohn’s Disease and Ulcerative Colitis have a higher risk of developing psychological problems, such as depression, than the general population (3).  I believe I was one of those people.

I had depression.

During the worst part of my disease, my parents tried to get me counselling. While it was thinly veiled as having a social worker come in just to “hang” with me in my hospital room, I was smart enough to know what they were trying to do. And, being the stubborn kid that I was (I’m a stubborn adult, now), I refused. I told my parents that I didn’t need any therapy. After all, I knew that I would be happy again once my pain was gone.

To be honest, for quite some time, I felt I had been right.

Once I recovered from ostomy surgery and felt healthy again, my depression seemed to go away after the following few months. I never experienced a day where I knew it was just gone, but I had started to realize I was happy way more often than I was sad.

Pft, therapy. Who needs it?

It wasn’t until the passing of my father, 5 years ago, today  that the feelings of sorrow and despair crept back into my mind, engulfed my every thought, and was felt through every bone in my body. The man who gave me my love for computers, the man who told me inappropriate inside jokes that I wasn’t supposed to tell my mom about, and the person who held my hand through almost all of my unpleasant and painful medical tests, had just suddenly disappeared from my life. My daddy was gone. I was a mess.

Was I more susceptible to a depressive episode because of my chronic illness? Was I depressed because of the medication I was on? Or were these feelings normal from the loss of a person so meaningful to me?

To this day, I’m still unsure.

What I do know is that after my father’s death, I actually went to get help from a counsellor. Yes, I gave in and listened to my parents.

But you know what? It helped me more than I could have ever imagined. Not only was I able to talk about the feelings of losing a parent and learn to deal with those emotions, but the therapy I went through helped me work through the feelings and thoughts I had experienced through my chronic suffering so long ago, that I had never dealt with.

I have not had one of those depressive episodes since those few months after my father’s death.

Do I think that this is the end of depression for me?

Absolutely not.

As someone with a chronic illness, it would be naive of me to think that. With pain comes sorrow, and if I am to fall back into the pit of suffering that is Crohn’s disease, I am almost certain the feelings of despair will follow.

But, if this ever is to happen to me again, I now understand that I need to get over my stubborn ways and accept help. Because, you know, they call it “help” for a reason. It helps.

Luckily, I haven’t been quite as sick as I was back when I was 13, and as 5 years has now passed since my dad’s been gone, there is little I have to depressed about. I am living a happy life with great friends, an amazing boyfriend, an awesome job, and a family that I love. But, if I am ever to get into a situation again, where I feel like I have fallen into a pit of despair, I know there is help.

I knew I needed to write this blog to bring attention to the depression that many of us are susceptible to because of our chronic conditions. Whether you have suffered, are suffering, or haven’t recognized your depression, I wanted to take the time to tell you that you should be reaching out for help – in any form.

Whether it comes from a counsellor, a family member or a friend, or comes from simply asking to talk to someone on our Facebook page, I just want you to know that it does get better if you ask for that help.

Please ask.

<3

If You Can Do Anything With an Ostomy, How Do You Change the World?

A few weeks ago I contemplated writing a blog. I was sad and disappointed in myself and I had this overwhelming urge to apologize to you all.

After thinking about it over and over again… I felt it might have just been better left unsaid. And unsaid it went.

But here we are and here I am writing about this very thing. I am writing about it because I’m no longer just sad and disappointed in myself, but angry and frustrated at the society we live in.

Beware, there might be some swearing and there might be some harsh statements. There may also be some things you don’t agree with. And, as always, that’s fine. But what you’re about to read comes straight from my broken heart.

It began the week that we’re all quite aware of – when “ostomy” became the word on everyone’s mind. When that girl from the UK with an ostomy came out about wanting to be a model.

I saw an early article about this woman. I thought it was great to see some traction in the ostomy space and was happy to see it. I even kind of laughed at her storyline about how she wanted to be a model, because, well, I’ve made it very obvious that having an ostomy doesn’t stop you from professional modelling.

At least, I thought I had.

It was the following few weeks, when her story started going viral, that I was on the receiving end of hundreds of notifications. I was bombarded with Facebook messages from Facebook “friends” – people I knew well, people I hadn’t spoken to in years, people who knew me through other people… who were messaging me to tell me about this girl and share one of the hundreds of articles about her.

At first, I thought it was nice that these random people remembered about me and my ostomy and that they were thinking of me. However, that quickly faded as I began to see just how into this viral story these “friends” of mine were.

These people were not only sharing the article with me, but were sharing these articles with everyone in their social networks. These “friends” were sharing the articles written about this girl, and just in awe about how amazing her story was. These “friends” thought she stood for something.

A story about a woman who had an ostomy and wanted to overcome it to become a model. That was her story.

And they loved it.

What the fucking fuck.

Not a single one of these “friends” had ever once shared any of the plethora of inspiring stories/pictures that many of you have shared on the Uncover Ostomy Facebook page.

Not once had any of these people shared a blog post I had written, highlighting how the ostomy has never gotten in they way of doing anything, including professional modelling.

Not once had these people even shared an article written by a national publication highlighting our efforts.

Not. Fucking. Once.

But here’s this girl, just showing off her bag, wanting to be a model. And they’re sharing it.

They’re loving everything about it.

“Hey, isn’t this what you do? She’s amazing” (It is… but like… what?)

“Hey, have you seen this girl? They’re definitely just writing about her because she’s pretty” (Ummmm thanks?)

“Hey, you know that girl in the news made me think about the ostomy so can I ask you a question?” (REALLY. Like, THIS girl makes you want to ask about the ostomy, but our community of over 6,000 people doesn’t make you curious!?)

I even had another person tell me Uncover Ostomy didn’t have any shareworthy content.

Nothing anyone would ever want to share.

Not.

Anything.

Bag_Laying_website

It was literally boggling my mind that this one girl was getting all of this attention. Actually, it wasn’t just making me question what I was doing, but it made others question it, as well.

Uncover Ostomy

Yes.

Uncover Ostomy is reaching its five year mark.

And in one week, this girl accomplished everything I had spent every minute of my free time trying to get us to accomplish, together.

And then it hit me.

This sense of failure. It literally clouded my entire life for over 3 weeks.

I started to feel sick. I was depressed. I couldn’t focus. I cried.

I don’t cry.

I started Uncover Ostomy to get the public to see the ostomy for what it is – an amazing, life changing, gift. 

And after 5 years of spending my time writing, networking, promoting, urging you all to join me and share, and all of you doing just that - some girl comes out of the woodwork just with the hope of becoming a model and the world thinks that this is so fucking amazing.

You want to be a model? So do hundreds of thousands of other women and men out there.

You want to change the world?

Cause we do. 

While the ache of failure radiated through my bones, I knew I couldn’t sit by the sidelines. So I started to reach out to publications that had mentioned this girl and to give them the cause that had been missing from the story. To give them our story.

Thanks to some amazing publications, we got a bit of press – some really good press. (By the way, thank you to all those who shared the pictures that made it into this article!)

But I was still getting a lot of “no’s.”

I had been used to the “no’s” from the media. When we started UO, we were often rejected because the ostomy wasn’t glamorous enough – even though Uncover Ostomy was meant to change that. It didn’t matter – it was still too taboo.

So, finally, this girl opens up the conversation and I try and swoop in and let them know about the goal we’ve been trying to reach for almost 5 years, and most journalists just came back to me with more “no’s.”

They said they had hit their ostomy “quota” and that there really wasn’t anything left to write about. (Apparently, attaching an actual cause is not a good addition to an already buzzing story).

Defeated, at least I understood their reasoning. I got it. That made sense. Too much of the same content. Ok.

Until today.

Today, there has been another influx of ostomy related content focused on an individual being a model.

Except for the fact that the publication writing about this? One of the exact ones where I was told “there was too much ostomy content.”

They had our website, they had our Facebook page, they had my contact info, and they had our pictures.

And they fucking ignored it all.

I’m furious.

For almost 5 years now, we have come together to build an amazing place full of support, courage, and hope. An online community where, together, we are working to change the negative stigma surrounding the ostomy. We have a goal. A cause. A mission.

But society doesn’t care.

So, here I am, sitting, writing, fuming, livid. Feelings of failure wafting back over me, tears streaming down my face.

Selfishly, I feel like I’ve waisted the past 5 years of my life.

Overwhelmingly, I feel like I’ve failed you all.

Angrily, I contemplate how our society prefers one girl’s dream to be a model, over our dream to change the world.

Here I sit.

Not knowing what to do next.

I know I want to change the world, I just no longer know how.

—————-

And yes, you can be a model with an ostomy.

You can do anything.

Itsy Bitsy Ostomy Bikini

On a sunny day on June 28th, I wanted to spend some time in the sun and soak in that much needed Vitamin D. After putting on my new bathing suit top, paired with my small bikini bottoms and modified with my special bathing suit belt, I looked in the mirror and thought, “Wow, I can barely see my ostomy.”

It kind of shocked me.

So I decided to take this picture and post it on the Uncover Ostomy Facebook Page:

As you can tell from the myriad of comments, there was quite a discussion. Much of it was supportive, with others even posting pictures of their own awesome bathing suit choices, (seriously, go look!) Some others, however, chose to focus on the fact that my ostomy is not representative of the ostomy population.

It is very low.

Some people even went so far as to angrily message me on my personal profile and then block me.

I posted this picture for a reason.

I posted this picture because I wanted to show how have adapted to my ostomy.

Did you know that I am only recently able to wear low cut bathing suits? Yes, what I look like now is not what I used to.

As a young teenager who just came out of ostomy surgery, I found myself with my bag quite close to my belly button and with an excess amount of weight due to years on steroids. Not only was I just getting used to having a bag on my body, but I was struggling with showing minimal skin in public as an overweight person.

Needless to say, I experimented with a lot of swimwear styles.

Tankinis were my first style-of-choice, as they not only easily hid my bag, but they also hid the excess weight I was concerned with. In fact, I was more concerned with hiding the weight than hiding my bag. (Priorities, right?) I found that there were so many different types of tankini styles out there, that I really didn’t have to worry about going to the beach.

Just by doing a bit of digging in the past day, I’ve found these gorgeous options below. (Go ahead, click – they lead to the purchase page!)

Tankini Option from Lord and Taylor

Tankini option from Lord and Taylor

A tankini option from Hudson's Bay

Tankini option from Hudson’s Bay

Tankini option from Tommy Bahama

Tankini option from Tommy Bahama

 

A tankini option from Kenneth Cole

Tankini option from Kenneth Cole

Eventually, as I began to meet other ostomates from around Canada and around the world, I found that a lot of ostomates chose to go for the one-piece swimsuit option. To be honest, I was really hesitant to try this style because they very clearly show off every curve of the body – again, more concerned with my weight than with the bag. Nevertheless, with the encouragement of others, I tried some one-pieces.

I found that if you picked the right cut, and with the right pattern (or all black), it was a good option. I actually own 2 one-piece bathing suits now!

A one-piece bathing suit option from ASOS

A one-piece bathing suit option from ASOS

(I literally just bought this one right now, while doing my research…so, make that 3.)

So after mastering the tankini, then moving on to the one-piece, I was finally ready to tackle the bikini. I had lost the steroid weight, and I felt that I was ready to try something new.

I tried everything from boy short bottoms to high-waisted bottoms. I tried different styles, different colours, different brands, and eventually found pieces that worked for me. I still wasn’t in “full bikini” mode, as my ostomy was still quite high, but they did the job, just right.

(I own a pair of the bottoms on the left, anddddd I just bought the bottoms on the right…. I stopped shopping after that, though, I swear!)

Now, my drawer overfloweth with the multitude of different bathing suit styles I own. Depending on the day and the situation, I choose what I think works best for me. Some days I feel confident and go for a super skimpy piece, while other times I opt to cover up.

One thing that actually really stuck out for me, after posting my picture to the Facebook page, was that people were calling me out for even trying to cover up my ostomy. To be honest, I was a little shocked that people were upset about it.

High-Waisted bottom option from American Apparel

High-Waisted bottom option from American Apparel

High-Waisted bikini bottom option from Hudson's Bay

High-Waisted bikini bottom option from Hudson’s Bay

I want to make it clear that I have absolutely no qualms against anyone wearing their ostomy outside of their bathing suit (have you seen this girl?). Once in a while, I do flaunt my ostomy in a skimpy bikini, however, admittedly, only around people very close to me (like my boyfriend.)

The reason for this, and you’ve probably heard me say this before, is that after having my bag for so long, it has literally become just another part of my body. To me, my ostomy is my ass, and I choose to treat it as such. So, when I’m getting ready to go out in public wearing a bathing suit, I just think, “would I want someone to moon me on the beach?” Hellll No. So I wouldn’t do the same thing to them ;).

(Though, seeing some of those ostomy flaunting pictures posted in the FB post comments… You are slowly starting to change my mind… Nude beach, anyone?)

Anyway, here I am, almost 12 years later, and I find myself with 0 steroid weight and with a lower ostomy than I once had. My now healthy body had finally decided to grow my torso to its full length and the time has faded my small laproscopic scars into my skin.

But you’re right.

I’m not 100% representative of the ostomate population.

When posting this picture, I never considered this to be the case.

What I do consider myself to be is a representation of what experimentation, adaptation, and confidence can look like.

Not all bathing suits fit people the same way – ostomy or not. We all just have to find what works for us.

When you do, I hope you flaunt it with pride.

————————

Have your own ostomy bathing suit pictures? Post them to the Facebook page and let us see what style you wear!

All is Fair in… Full-Time Employment

Job hunting is hard

So, yeah. Maybe for a while, I was being really dramatic about being unemployed.

Finding employment is hard. I was stressed!

But I wasn’t really stressed about finding a job. I was stressed about finding the job.

I had previously been working at a pretty poorly run company and saw the signs of it going downhill, fast. I wasn’t being respected, I was being asked to work overtime to get something done and then it would be ignored and forgotten as if it was never needed in the first place. They also weren’t paying me the right amount or on-time, and just last week, I was finally paid my salary for working last July. What was even worse was they were lying to my face – and it was pretty damn obvious.

When I left that job, I felt a rush of determination. Determination that I was going to find a new job – the job. 

You know, like when you break up with a really terrible boyfriend (and we all know I’ve done that a few times…)

“I am sick of dating idiots, douchebags, psychos. I am ready for the one.”

So, for my month of unemployment, I was freaking out. You know, like a regular single girl.

“What if I can’t find the one?”

“What if I find the one and they don’t want me?”

“What if the one doesn’t exist?”

I felt desperate. I felt like I was reaching that age “when it’s kind of weird that you’re still single.” It almost felt like I was living that life where your grandmother constantly asks you why you’re still single and if she’s going to manage to live long enough to meet her great-grandchildren. Except this was about a job – and for me, not having a job was way more awful than being single forever. I was determined to find the job

And I was going to do damn well everything in my power to find it, grandma.

Ugh but the process. Going through the motions again and again and meeting people who are awful or putting yourself in awkward situations and maybe, if you’re lucky, coming out on top.

You know? The process.

The awful, horrible, excruciatingly painful, process.

You start by updating your online profile as if someone is just going to magically decide you are the one:

You start the only way you know how – the internet. You update all your channels, whether it be Linkedin with all your great experience and achievements, or your Match.com profile with all great your experience and achievements. You update the headshot, on both, to the most glamorous and least drunken photo you can miraculously find, and you cross your fingers.

Updating profile to get a job

You ask anyone you have ever met if they might know someone who knows someone who might, maybe, be interested in you:

Your best friend know of any job openings at her boyfriend’s office? Does your friend’s boyfriend also have any single friends? None? What about your friend’s boyfriend’s sister? Her best friend?

Awkward for love

You graciously accept anyone’s offer to connect you with the one, even though you think you are way better than that but also think you have no other choice:

Like when your grandma cares so much about you and your happiness that the thought of you being single literally kills her, so she sets you up with Fran’s grandson who lives in his parents basement and can’t drive. Or your friend’s dad owns a pizza hut that needs a driver, and you think of no better way to use your Masters degree. And you do it. You do it just in case you can’t find anything else.

Nothing else.

Um, no

You also reach out to any and all prospects even though they are insanely out of your league just in case they are desperate:

Hot guy at the bar is standing alone so obviously I’m going to awkwardly dance over to him because, why wouldn’t he fall in love with me?

Need 7-10 years experience? Yeah, I’m 24, but I’ve been doing this since I was 13 – I swear.

I promise

No, you don’t even know.

You finally find someone who is willing to give you a chance and take you out on a date/interview you (same thing) and you have to act like you think you’re pretty great when really you have no idea why you’re on this planet to begin with:

Why, yes, I just casually hike all the time and I love nature and all things relevant. Experience with Quickbooks? Who doesn’t have that? That’s accounting, right???

Thinking you're more amazing than you really are

You end up realizing that your date/interviewer is reaching into your soul by asking you a series of “thought-provoking” questions that literally make you reconsider your very existence but there’s no way out:

No idea

“If you were a box of cereal, which would you be and why?”

“What is your least favourite thing about humanity?”

“What do you think about when you’re alone”

meep.

After the torturous first date/interview, no matter how well or poorly it went, you play the “waiting game” and want to die:

Do you wait for them to email you first? Do you send the first “I had fun last night” text? Do you send a “thank you for considering me” email or is that too needy?! HOW DO YOU KNOW!?

Can they see me?

Sometimes, you get rejected, but you don’t let that stop you from “getting back out there” because you will not be one of those hoarding catladies:

Your loss

My mom thinks I’m awesome.

Then, somehow, by forces unknown, you end up finding the one, tell everyone you’ve ever met about it/them, then regret it immediately in fear that you’ve jinxed any chance of closing the deal:

Shh

Can they hear me?

Finally, if you’re really, really lucky, you actually land the one, and wonder every fucking day for the rest of your life how you managed to do that:

Only you

I honestly could not tell you how I did it.

After going through terrible date after terrible date, I somehow, by the lucky stars above me, found my perfect man. He treats me like a princess, takes care of me, values my intelligence, and makes me smile for no reason at all.

After going through terrible interview after terrible interview, I also, somehow, found my perfect job.

I currently work for a digital agency that is better than any job I’ve ever had or could ever have imagined existed. Even before I started, they asked me if I needed benefits, and only picked a provider that would fully cover my ostomy supplies.They constantly give me thought-provoking feedback and they actively seek out ways for me to learn to grow me as a professional. The whole team gets to go on work retreats in the mountains and they feed our silly little food cravings by supplying the best and healthiest snacks to the office. I was also promoted after only working there for a month because they valued my skills and intelligence. And the best part of all is that the place where I work is like a second family.

It’s nice to be able to look back now and laugh. Yes, I reached out to everyone about everything. Yes, I had terribly awful interviews/dates. Yes, I got rejected. But it was all worth it.

It’s not supposed to be easy to find the one, right?

They say that people tend to get married to their jobs. Well, if that’s true, I am lucky to have found one I could spend the rest of my life with.

Mr. Right… Now. Or So I Thought.

I am an extremely lucky girl to be able to say that I’ve been on a tropical vacation at least once, every year.

99% of the time, it has been with my family.

Usually, after dark, on these vacations, my mother would go to bed early and my brother and I would find some friends. Eventually, my brother would go off with the kids close to his age, and I would go off with some friends closer to my own.

Ok, well… usually with a boy.

In the past, going on vacation was a chance for me to live outside of my normal, strange life. In high school, I was picked on by boys, instead of picked by these boys. I was that awkward girl who could never get a date, all thanks to the 2 years I spent isolated in the hospital, battling Crohn’s.

Eventually, I came to realize that on vacation, these people who I would meet didn’t know about my past and didn’t jump to tease me or to shun me for being so strange. On vacation, I had confidence. On vacation, I was the girl that the guys wanted to talk to. It was weird. It was also really fun.

So, I started collecting vacation boyfriends.

Ignoring the fact that it sounds really bad…. as the years went on, I found that every vacation there would be some boy that would be interested in me and vice versa. Even though I had moved on to university and had overcome my boy repellant curse, vacations were a time for me to just enjoy someone’s company. For the week of the vacation, I’d usually find a boy to hang out with around the pool/beach, to hang out with in a larger crowd, and then to stay up really late talking with/maybealittlebitofkissing. It was just a way to add an extra element of fun to the trip, you know? (don’t judge me……….)

Every vacation, however, the same rules would always apply. We’d have a fun week, we’d maybe add each other to Facebook, and then we’d never really talk again.

And it was awesome.

Unfortunately, as things got a little crazy for me last year, the last tropical vacation I went on was last February in Jamaica, and it was the first tropical vacation I was taking without my family. It was actually a destination wedding for one of my utmost favourite couples, to which the bride also happens to be one of my sorority sisters. And yes, other sorority sisters were coming too. I thought it would be nothing but partying. I booked the trip as soon as I could, and was dying for that week to come.

Long story short (since I already wrote a bit about it here), I met Matt on this trip. He was on the same resort trip that I was on, for a different friend’s wedding. Wanting to maintain my vacation boyfriend streak, and despite my friends calling me ridiculous, I set out to get him to notice me and join me for a week of fun.

My (super secret) tactics worked, and we ended up hanging out all week and having an amazing time. It also didn’t hurt that my sorority friends ended up going to bed early every night, leaving me with no other option than to hang out with Matt. We partied with his friends, we stayed up late sitting under the stars talking about everything we possibly could, and…etc.

Matt had become my vacation boyfriend and had made that week even better than I had ever imagined it could be (and I had already imagined it being pretty great).

When the vacation came to an end, I knew there would be rules to follow. Matt was only in my life for that week. No matter how good looking he was, no matter how nice he had been, and no matter how happy I had been that week – our vacation relationship was over. And I kept repeating that to myself even in the boarding area of the airport on the way home. After all, in real life, he lived 2 hours away from me.

I was never going to see him again, and I was actually really bothered by that thought. But I shook it off.

GET IT TOGETHER – I told myself.

Then, something happened: In the airport baggage claim, back in Toronto, Matt called me over and asked for my number.

Ummm, what?

This isn’t how it’s supposed to happen! I thought we had both agreed to these unspoken rules of awkwardly adding each other on Facebook and never seeing each other again. No one keeps talking to their vacation boyfriend/girlfriend after the vacation is over! It’s the RULE.

I still don’t know why I did it (and I almost didn’t), but I walked over to him and gave him my number.

1 year later, I have never been happier at this very moment than I have been in my entire life. 

This past weekend, Matt and I celebrated our “official” 1 year anniversary. Though we met last February, we continued to see each other every weekend, until he eventually asked to be my “real” boyfriend, last April.  Since late October, he’s been living in Toronto, and next month, he’s moving in.

I’m usually one to follow rules, and I’m also usually one to cut emotions from a situation – it’s how I’ve been able to just “have my fun” on vacation. But there was something about Matt that I couldn’t forget. Whether it was the way he made me think, the way he made me laugh, the way he looked into my eyes, or the way he held me – there was just something.

And there still is.

<3

Remember to Always Burn Bright

I’m not afraid of a lot of things.

Not in the “I’m too proud to admit that I’m afraid of something” way, but more so in the sense that, when you’ve been through as much as I have, most things are much less scary, in comparison.

I’ll easily admit that I don’t like heights (not in terms of flying, but in terms of standing on top of a really tall ladder, obstacle course, rollercoaster, etc.), and I dislike a lot of things, like needles, and surgery, and death. Because I’ve had to confront these things head on, and have survived, the anxiety I had once had in the past has dulled.

It wasn’t until this week, however, that I realized that I am, in fact, scared of one thing.

Frightened. Terrified.

Of this one, all-consuming, ever-flowing, never stopping, life-altering thing.

Time.  

Time moves along like a train barrelling across a track. It has a predetermine route that it will continue to follow until it reaches its destination.

Except time doesn’t have a destination.

Time continues to barrel on, never slowing, never stopping, because nothing can ever get in its way.

Nothing, and no one can control time.

It just ticks along.

Tick, tick, tick.

I mean, that’s horrifying, right?

It was Thursday night that I really realized how terrorizing the concept of time is.

I accompanied my Zaida (grandfather) to his retirement home’s Passover dinner. I love my Zaida very much, and did not hesitate to agree to join the festivities. It’s just, you know, retirement homes.

I’ve never ever liked the idea of being old. I’ve actually said, many times, that I’d rather live a rich and full life while I can, and then end it when living becomes more of a hassle than an enjoyment.

It was this same logic that I applied when I was offered ostomy surgery. I would have rather had surgery to stay alive and live a normal life, than to be stuck, sick, in a bed, unable to live. I mean, I was going to die, but I had my chance to live life, so I took it. But when you’ve reached the end of your life, there are no more options. That’s it.

Time decides that for you.

Tick, tick, tick.

While I enjoyed spending time my Zaida, over the holiday dinner, I couldn’t help but scan the room. I saw tons of octogenarians sitting in their wheelchairs – some with family members, and even sadder, some without – trying to eat the chicken dinner they had been served. And it was hard for them. Hard for them to eat.

Time made them this way.

Terrifying.

At the end of the festivities, my mother and I wheeled my Zaida back to his room and said our goodbyes. It was time for us to have our own meal. We began discussing options, until my mom suddenly knew exactly where we were going to eat: Sushi Bar.

Sushi Bar is a restaurant owned by a man named Jimmy. Jimmy once owned another sushi restaurant called “Dr. Sushi,” and it was my father’s favourite restaurant. Jimmy’s restaurant was the first place I had ever tried sushi, after my dad began bringing me there, at 8 years old, for our many father-daughter dates.

One day, over california rolls and eel sushi, I mentioned to Jimmy that I loved his place and that I wanted him to do well. Jimmy, delighted, said that he had a way that I could help him. He handed me a tshirt and a handful of fliers, and told me that I could help him by going to flier the neighbourhood. He promised to pay me, and I was delighted to have been offered my first job. My dad, fully supported me, and we had planned to give out the fliers, together. 

Now, the details get fuzzy from this point.. but I remember that I never had the chance to flier. I got sick. I ended up in the hospital.

And I remember being extremely upset about being unable to flier. I felt like I was letting Jimmy down.

Time went by.

Eventually, Jimmy closed Dr. Sushi.

Time had decided that it was time for a change.

We never actually knew where Jimmy had gone, and it was just one of those things that happened.

Recently, however my mother and some of her friends ended up at a restaurant, that she found out, was his. He had come back into town and opened up a new shop. She had, apparently, gone up to him and introduced herself, and he knew exactly who she was. He also remembered me and my dad. He did not know, however, that my dad had passed, and he was sad to hear the news. My mom thought this was the perfect place for us to dine, and she was excited to see what Jimmy’s face would like when seeing me, after all these years.

All this time.

Tick, tick tick.

I walked into the restaurant and saw the same man I remembered from all those years ago. While he did not recognize me, (and said he would never have known it was me on the street), he knew exactly who I was.

Though it did grey him, and add a few more wrinkles to his face, time, thankfully, did not erase those memories.

Time has the ability to give and to take away.

Time gave us these memories, but it also took away my dad, my health, and so much more.

While I’m usually not a weirdly emotionally, touchy-feely, “symbolic,” type of person, I did find it notable that Jimmy included a candle on my specially made plate.

Sushi Bar Sushi

A candle burns for as long as the wick allows.

There are variables that might extinguish the flame, like water, or air, however, the flame usually reaches the end of the wick.

We are the candle and time is the wick.

And all we can do is burn as brightly as possible, for as long as we can, until we lose our flame.

Things are always going to change, and we’re all going to get old, and I think that is what’s so scary about time. These things are going to happen and there is absolutely nothing we can do about it.

We might as well use the time that time allows.

Ok, Let’s Just See What Happens When I Stand On Your Desk

A few months ago I went ahead and applied for the Canadian Disability Tax Credit.

For those who live outside of Canada, or are unaware, The Canadian Disability Tax Credit (DTC) is a non-refundable tax credit for individuals who have a severe and prolonged impairment in a physical or mental function, and it is expected to, or has lasted for at least 12 months.

Now, to be clear, I do not consider having an ostomy to be a disability, per se.

I mean, it is obvious that I, and others with ostomies, are able to carry on our daily business while sporting our baggy friend.

The Canadian Government, however, does consider having an ostomy as having a disability. Personally, I know a number of individuals who have gotten the DTC because of their ostomy.

And that’s what should happen.

I don’t believe that the ostomy itself is a disability, but I do believe that the cost of having one, is.

Because the Canadian Government doesn’t cover ostomy supplies in our healthcare, the cost adds up. Personally, I find myself spending over $300 a month just to be able to walk out my front door.

$300/month, just to be alive. 

People with ostomies are allowed to apply for the DTC because one of the major qualifying factors is that you must have a restriction in independently managing your bowel or bladder functions for at least 90% of the time -  exactly what the ostomy bag is for.

Right?

I mean, having an ostomy means having no sphincter and having no control over your waste output.

Right?

So having the ostomy bag is what we need in order to control our bowels/bladder.

Riight?

So that means that those with an ostomy cannot independently manage their own waste output, because they need the help of the appliances.

Riiiight?

Well… SURPRISE.

According to J. Pitz, the lovely case worker who handled my request, he believes that 10% of the time, I don’t need an ostomy.

That’s right. Today, I got my DTC case letter back in the mail and was denied because:

Your restriction in independently managing your bowel and bladder functions is not present all or substantially all of the time (at least 90% of the time.)

looooooooool what.

Ok, Mr/Ms. Pitz, here’s a proposition for you:

How about I spent 10% of my day, in your office, without my ostomy appliances on.

Yeah, let me just. *begins to climb up on desk*

.. get.. up.. *gets on top of desk*

onto your desk… *stands on desk*

Yeah, how about I just stand on your desk and we’ll wait for 10% of the day and you can just see what happens.

Let’s.

Just.

See.

So, needless to say, I am beyond confused by the Canada Revenue Agency for thinking that I have any control, whatsoever, over my bowel function. I mean, hello, if I did, I wouldn’t need an ostomy in the first place.

duh. 

Thankfully, I am allowed to have my request reviewed within 90 days of the decision, if I make the request.

And, yes, I am going to make the request.

Maybe, in person.

——————–

So, dear Canadian ostomy friends – I need some help.

Have you applied for the DTC? Have you been denied? Did you have your request reviewed, and were then approved? What did you have to do?

Any and all advice would be greatly appreciated.

An Open Response to the Guy Who’s Upset He Can’t Date Me.

This past week, I received a message via the Uncover Ostomy contact form, in response to the lastest blog post about my Valentine’s Day festivities.

Well, more about who I chose to spend my Valentine’s Day with…

(I’ve bolded the aspects that stuck out, to me, so feel free to skip the rest.)

Dear Jess,
I hope this correspondence finds you well. I wanted to take a minute and share a couple of thoughts about your recent blog post, dated Feb 15th.
Ordinarily, I wouldn’t bother to comment or quip about some stranger’s comings and goings, their life and their “business”…… Because it’s not any of my business, so ordinarily, i wouldn’t care enough to bother, like, what 4?
But reading that Feb 15th blog entry, I felt compelled otherwise….. and how did I stumble on the blog, one right mouse button click too many I suppose…….
Anyways, I just wanted to comment that I found your entry totally heart wrenching and disappointing. As a Jewish guy here in Toronto committed to courtship with Jewish women, I find it painful and frustrating to observe Jewish women who have totally excused themselves from embracing that same commitment, to endogamy. As a Jewish guy, I can’t court whomever. If I do, my offspring will cut off and my lineage severed. My Bubby can’t take solace in the fact that despite her grandchild’s interfaith relationship, the lineage will continue. Jewish Maternal lineage is not a loophole for Jewish women to say, ‘I’ll date whoever and it’s okay, i’ll still be Jewish and so will my kids’ etc. Apart from the sheer falsity of that thought (lol since when does a non-Jewish spouse teach their kids to sing ‘Ma’Nishtana’ on Passover?), the male half of your coreligionist (or co-traditionalist if you prefer) have no such loophole to abuse.
As a Jewish guy, it’s date whoever and sacrifice my lineage, period. And while some guys might be totally assimilated to the point where they don’t know about their Jewish identity, nor care, and thus ready to court whoever they suites their fancy…… for us Jewish guys who want to preserve our identity, we need to court inside the “community” (lol, funny notion), otherwise we face ostracism. No bris, no bat/bar mitzvah for my kids if I marry a ‘Miss French’s’. So we Jewish guys who are committed to endogamy for the sake of preserving our lineage, and note there is nothing racist in the principle of endogamy, sadly watch or female co-religionists (or, co-traditionalist) get involved with whichever guy tickles their fancy, leaving us men behind, either to remain perpetual bachelors or betray our lineage, by default forced forsake the perpetuation of a Jewish identity to the next generation. That’s why I found your post, heart wrenching.
Best of luck in all your career and philanthropic pursuits,
N

Ok, before I get into what I really want to say, let me give you a bit of context.

I was raised Jewish by a Jewish family.

I went to a private Jewish elementary/middle school, I had a bat-mitzvah, kept Kosher, went to synagogue on the important holidays, and I have been fully educated in all Jewish traditions, cultural norms, and history. I have been Jewish for the majority of my life. My dad’s side of the family is “reform,” where they celebrate the important holidays, attend synagogue on the most important days, and keep Kosher. My dad’s sister is actually an Orthodox Jew, and follows all Jewish traditions and rules to the letter. My mom’s side is much more “reform,” and mostly just use the Jewish holidays as a reason to get together for dinner. Besides my mother and her parents, everyone else on this side of my family has married outside of the Jewish faith, but that hasn’t stopped them from recognizing and observing some of the traditions.

My Jewish upbringing is why I was featured in this article, on ShalomLife’s “Top 20 Under 40″ list. It was a wonderful article that said some great things about this campaign. I want to, first and foremost, thank the publication for recognizing me and Uncover Ostomy.

It is this article, that I assume, is how the particular individual sent that email, came across this campaign. (I haven’t, however, determine exactly how he found out that my boyfriend isn’t Jewish.)

In case you were unsure, the point that this individual is trying to make is that, in the Jewish religion, children are determine to be Jewish based on their mother’s religion, so Jewish guys are forced to marry Jewish girls if they want to have Jewish kids. What has expressed here is his disappointment in my decision to date “whomever tickles my fancy,” (aka someone not Jewish) because I am then taking myself out of the group of potential wives for him, and his fellow Jewish brethren.

To that I say: I am offended.  

He’s pretty much implying that I have taken myself out of his potential dating pool, as if I was just waiting there to be chosen.

Ummmmm.

Excuse me.

I can pick whomever I damn choose. Sorry that you don’t have the opportunity to date me? Sorry I’ve picked someone who’s not Jewish, over you? Besides, not a single one of my past boyfriends have been Jewish.

Ok, so, at first, the “not dating Jewish guys” thing wasn’t something I did intentionally. In fact, there have been a number of Jewish guys I’ve wanted to date. Unfortunately, the Jewish boys whom I had grown-up with, and the other boys that I have since met, have never seen me as dating material. Hence, I’ve never really tried to date a Jewish guy.

I was deemed “unfit” for dating, it seems, back when I was battling my Crohn’s disease as a pre-teen. Not only was I isolated from growing up with the Jewish community because I was stuck in a hospital bed for 2 years, but I had become shy and awkward and didn’t fit in. It didn’t help that the side-effects of my medications made me look like a monster. Even after I had surgery, I didn’t know how to act in social situations and I was still overweight. I never meshed with that group, so I didn’t really bother.

It was around this time that I remember seriously thinking about the premise of Judaism, as a whole. It was during those long, lonely days that I sat, in pain, in the hospital thinking “why me?” and “what did I do to deserve this?” In school, I had learned to trust and believe in God, but during this ordeal, I couldn’t really understand why. These thoughts made me question what religion really was all about.

After surgery, however, I went back to my Jewish school and pushed those thoughts aside.

Eventually, I went on to a public highschool, where I was one of very few Jews, so I identified as such. It seemed to make sense to me, and I continued on through to university.

It wasn’t until my second year of university that my Jewish identity started to morph. I suppose it could have had to do with living outside of my Kosher household or even because I didn’t hang out with the Jewish community at my school.. which, after all, was comprised of all those kids that I had never meshed with in elementary school. Whatever it was, the previous thoughts of questioning religion that I had, had, back in my days of being sick, slowly started to creep in.

It was in second year that I had met a boy whom I liked, and we started dating. He wasn’t Jewish, but he was nice and treated me well. He was also the second boy I had been in a relationship with who wasn’t Jewish. It didn’t matter, though, because I knew I was still young and marriage would not be in the cards for a while.

Anyway, this boy and I dated for a few months into school and throughout the Christmas break. It was then that my boyfriend of the time invited me over to his family’s Christmas dinner. In response, I invited him to join me at my family’s equivalent Channukah celebration.

That is, until, my father said otherwise.

I’ll be clear and say that I adored my father, and always will…. but in this moment, everything I thought I believed, changed.

My father said I was not allowed to bring my non-Jewish boyfriend to Channukah dinner. 

He explained that he expected me to marry a Jewish boy so that I could have Jewish kids. He said that bringing this non-Jewish boy into the family for celebrations was not appropriate. He said that he knew this boy wasn’t long-term, but that I needed to start thinking about my future and how I was going to raise a family.

I remember looking at him, stunned, with my jaw brushing against the rough carpeted floor.

This was a man who had always, always, always taught my brother and I to be accepting of everyone. Sure, we went to a private Jewish school, but we also went to a public summer camp, public highschool, and we had non-Jewish family friends, whom we had shared both Christian and Jewish celebrations with. I had been raised to learn about all cultures and religions and to accept everyone for who they are.

And now, suddenly, inviting a non-Jewish person to a Jewish celebration was not allowed?

I reminded him of this. I reminded him of the values he taught me.

And then I didn’t speak to him for 3 days.

To me, religion was the least relevant factor in the person I would choose to spend my life with. Why would I ever want to turn down a guy simply because he wasn’t Jewish? What if I had found the most amazing person in the world, who treated me like gold, and who would do anything for me, but he wasn’t Jewish? I’d have to say “sorry, better luck next time”? Even if he totally respected the Jewish faith? Even he let me celebrate the holidays and share them with my kids? Would it be better for me to end up with someone who didn’t respect me, simply because they followed the same rules of faith?

It didn’t make sense.

If someone loved me and I loved them and we had a happy, healthy, respectful relationship, that was the only thing that mattered.

The views my father expressed made me seriously reconsider why I needed religion in my life at all.

Eventually, he apologized and explained that he knew I was right about the idea of acceptance. He did, however, make sure to mention that he still really, really wanted me to marry someone Jewish, to keep it in the family..  I said I would see where my life ended up. And that was that.

Sadly, less than a year later, my dad died from a rare blood disease at the young age of 46.

And with him, died my need for religion.

It was during his “Shiva” (the Jewish form of a Wake, and lasts a week), that I knew religion was no longer for me. Everywhere I looked, there was something religious. A symbol. A prayer. And my Ultra-Orthodox aunt telling me that his death was “God’s way.”

No it wasn’t.

He was dead, and no part of religion was going to bring him back.

Just like I had been sick and almost died, and the surgeons saved my life.

Just like how religion was not going to play a part in how much love would exist in the marriage I would eventually choose.

And this is where I stand. This is where my journey has taken me.

Journeys are unique. Everyone experiences a different life that contributes to an individual sets of beliefs. I’ve found this especially true while doing work for this campaign, as those who have had especially rough journeys either end up with a lack of faith, like me, or with one renewed.

And you know what? To each their own.

My personal journey has led me to a place where I identify as just being me, and where I identify with an overarching set of beliefs that I do not categorize with any religion. I believe in the tenants of being kind, being respectful, being generous, and being loving. I also believe that others have the right to believe in whatever they so choose.

I, as you all know, very much believe in acceptance for all.

So, as I wrap up this long winded post, I want to say that my own personal journey has led me away from religion, and I believe that it’s ok. I want to say that I also believe that while this may be where I ended up, others end up completely different, with newfound strong belief in a higher power. While those people believe in something different than what I believe in, to me, it doesn’t matter. What matters to me is that we are all happy in the beliefs that we have chosen.

My dad passed away over 4 years ago now, and it’ been that long since I’ve stopped identifying as Jewish. I still go to Jewish family events, I still enjoy the food, I still understand the traditions and cultures, and I even still catch myself saying things like “oy vey.” I was raised Jewish, and it will always be a part of me.

My current boyfriend isn’t Jewish. He also isn’t any other religion. He was raised in a family that believed in another faith, but, like me, identifies with being himself. He believes in the same tenants that I do, of being kind and respectful and loving and accepting, and acts that way towards me. It doesn’t matter if we celebrate Channukah or Christmas, or we do both because we get to spend time with our families. What matters is that we love each other and have a wonderful relationship based on important values.

To the guy who wrote me that email: I am not Jewish, nor do I plan on raising a Jewish family. I do, however, recognize my family history and tradition, and will ensure my future children recognize it. I will also ensure that my future kids understand the religions, cultures, and traditions of all other faiths in the world. I don’t believe in Judaism, nor do I believe in any other religion.

What I do believe in, is accepting others for who they are and that they are happy with what they choose to believe in.

Maybe you should too.

Be Mine, Valentine

The reason February 15th is the most wonderful time of the year is because the emphasis on the need to be in a relationship is gone. I don’t feel the need to be in one and I’m glad the day has passed. I’m happy with the way things are and I don’t need my entire world telling me relationships are the be all and end all to happiness.
Does that mean I don’t want to be in one? No, it does not.
What it means is that it’s going to take someone really special who can completely sweep me off my feet to convince me to be in one.

Remember that? That was from my February 15th post, from last year.

The post, specifically written the day after Valentine’s Day, touched on how I was enjoying being single, how my non-date Valentine’s dinner date the evening before had actually been wonderful, and how I thought that I deserved the goat in the arranged marriage I was willing to accept since I was getting sick of the playing the dating game.

My, how things can change in a blink of an eye.

2 days after I had written that blog, I met the guy who would turn my life upside down in the best way I could ever imagine.

While I’m not going to use this post to describe the story of how Matt and I met (since I’m saving hat for another time ;) ), I’m just going to say that it was an unexpected and life-changing surprise.

Those who know me, know that I love surprises, and that’s exactly how this year’s Valentine’s Day began. On February 13th, Matt came home with these gorgeous flowers for me.

Valentine's Flowers

Everyone expects flowers on February 14th, but I was wonderfully surprised when he came home with them a night early. I mean, hello! It meant I had 2 days of Valentine’s plans!

..Valentine’s plans.

A week or so, ago, Matt and I had a discussion about Vday and whether or not we should do anything to acknowledge it. After all, we spend every day expressing our love for one another (ew, barf, I know), so it wasn’t like we really needed a special day for it. Matt was pretty neutral when it came to the day, but I decided I wanted to celebrate. Having had only terrible Valentine’s experiences with exes in the past, and spending the rest of my life Valentine-less (except for my mom…), I didn’t want to let this year go to waste. I wanted real Valentine’s plans.

While I fully understand that this holiday had been invented to boost economic spending and to put undue pressure on people to show their love, I still wanted to do that. You know, at least once.

Besides, we had decided to keep it simple. So, of courssssse, I did….

I spent the entire afternoon cooking a giant meal for Matt, which included a homemade wheatberry salad with toasted walnuts, dried cranberries, et al with a lemon dressing, tenderloin with caramelized onions and asparagus wrapped in prosciutto, drizzled with a homemade balsamic glaze.

Valentine's Meal

I also made a dessert called “S’mores in a glass,” which consisted of homemade chocolate coffee mousse, graham cracker crust, and from-scratch marshmallow topping. Usually, I like to get fancier in my desserts, but this was a recipe Matt and I had seen being made on a cooking competition show called “Come Dine With Me Canada,” and he made a comment about how delicious it looked. So, naturally, I found the contestant on Twitter and asked her to email me the recipe.

Keeping it simple, right?

Valentine's Dessert

The meal was waiting for Matt when he came home to the dimly lit apartment full of glowing candles, and of course, those gorgeous flowers, making for some lovely decoration. He ate, we drank, and the time passed by, almost too quickly, as we caught up on the things we hadn’t talked about in forever.

You see, while Matt doesn’t technically live with me, he does “come home” to me, as most of us his stuff is here and he has a parking spot in my building. However, even though I see him every day, we have fallen into the routine of coming home at the end of the work day, eating, watching TV, and going straight to bed. Having special time set aside for us to really talk was a wonderful change. It also helped that we had special time set aside for that “Valentine’s Romance,” but I’m not going to go into those details.. ha!

While we enjoyed all the things that Valentine’s brings, we couldn’t help but do what we do best together. After all the fancy food, the drinks, the gifts, and the romance, we put on our sweatpants, turned on Netflix, and watched one of the new episodes of House of Cards.

And it was great.

I finally see what all the fuss of Valentine’s Day is really about. It’s not about rubbing your love in other people’s faces (as I’ve seen some people do via social media), and it’s not about forcing your significant other to buy you gifts. Valentine’s Day is really just about focusing on the person that you love and working on making your relationship as strong as it can be.

It was in the card that I wrote for Matt that went with his gift that I explained how happy I had been once been being single, and that it wasn’t until he came along that I realized just how much happier I could be.

Don’t get me wrong, I stick by what I had written last year on this very day. I enjoyed being single. I enjoyed only having to worry about myself and doing whatever I wanted, when I wanted. I also stick by what I said when I wrote that someone really special would have to come along to change my mind.

It just turns out that he did.

Happy Valentine's Day!

————–

How did you spend Valentine’s Day?

No plans? There’s always today – Singles Awareness Day! Enjoy it.

Lots of love to you all <3