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

Courage Surrounds Us

This has been a really exciting week, for me. So exciting, that every time my phone buzzed, I jumped to answer it because I was eager to see what posts had been shared on the Uncover Ostomy Facebook Page.

Last week, as I celebrated my 11th “Bagaversary,” I asked you all to get on social media and post pictures that represented your story of survival, using the #UncoverOstomy hashtag – and I’ve seen an amazing response.

There were not only some great pictures, but amazing stories to go along with them. From model photoshoots, to artistic impressions – the courage that was portrayed in these photos was unreal! I want to say thank you to every single one of you who participated.

Now, as promised, here is one of the pictures that I thought deserved some attention. This is Krystal Weir’s story:

Ostomy Story of Courage

This picture is who I am now and what I have accomplished! I gave birth naturally with an Ileostomy when they said I couldn’t! I got pregnant when they said I couldn’t, I found a man that loves all of my “baggage!” When they said I couldn’t! My name is krystal and I’ve had some tough times! Diagnosed at 14 and had my 1st surgery in 2006. I was healthy until this precious boy while growing inside of me stretched my Stoma too big and tore a tiny hole in my bowel. When he was 6 months old I had to have another resection which has left me with 1.75m of bowel. It’s been a long journey but I have my baby boy and soon to be husband! I can’t say I love my new Stoma yet but the first surgery saved my life and gave me life! His name is Lukas!”

Not only did this post get 103 likes, and 18 comments, but her story touches on all of the elements of great courage and survival – an illness, surgery, finding love, creating a family, and being grateful for the ostomy that saved her life.

Krystal, thank you so much for sharing your story and this wonderful picture with us all.

Now, for those of you who didn’t notice, I had a bit of an underlying goal.  The goal of this little contest was to encourage self-advocacy. As you all know, Uncover Ostomy works to not only break the stigma surrounding ostomy surgery, but works to encourage ostomates to open up and show others how wonderful life can be, after surgery. We believe that, in doing so, each individual ostomate can contribute to removing the stigma. This was a great effort!

However, while I saw some amazing stories, I also came across something I wasn’t expecting.

A few days after announcing this little contest, I received a message on the Facebook page. An Uncover Ostomy fan reached out to me and said that they had decided to take down their picture after they had posted their wonderful story. The reason, they said, was that they hadn’t realized that everyone could see their picture – not just the people who liked the page. This person told me that they didn’t yet feel comfortable letting their social circle know about the surgery because of issues in the past, and fear of the future. I acknowledged the message and thanked them for their honesty.

I didn’t expect it.

I was reminded why I do this.

It’s been a long four years since Uncover Ostomy was born and I’ve seen such an amazing turn around, not only in the public perception, but the patient perspective of how the ostomy is perceived. However, I sometimes forget that there were people still not comfortable with their bag.

While I do not judge anyone for how they feel, or their decision to remain silent, this situation gave me a renewed sense of urgency to spread positive ostomy awareness.

However, as I’ve said over and over again - I can’t do it alone.

So while this particular contest may be over, it doesn’t mean the advocacy is.

It will never be over.

Not if I can help it.

So, friends – please. Please keep sharing your story. Please continue to post pictures. And please keep helping me remove the ostomy stigma.

<3

11.

I have been alive for 11 years.

For 11 years, I’ve been able to think.

For 11 years, I’ve been able to grow.

For 11 years, I’ve been able to learn.

For 11 years, I’ve been able to eat.

For 11 years, I’ve been able to live.

11 years ago, today, my life was reborn, because 11 years ago today, I had ostomy surgery. 

Jessica Grossman - Ostomy surgery 11 years

For those of you who do not know my story – I became very sick at the age of 8, was diagnosed with Crohn’s disease at the age of 9, had an enormous flare-up when I was 11, and remained in the hospital until I was 13, where I was told that if I did not have surgery, I would die.

This very day, 11 years ago, I had to choose between giving up, or fighting back.

Today is my 11 year bag-aversary.

I don’t want to use this post to go on and on about how thankful I am for my ostomy, because every post I write has that as its main theme. I write about making it through the professional world, relationship highs and lows, friendships, shopping, vacationing, and everything that comes with living life that, really, without surgery, I would never be able to experience.

Instead, I want to make this about you. 

I want to make this about you and your story of fighting back. I want to make this about the struggles that you have triumphed over, or the battle you are raging through right now, whatever it may be that allows you to simply wake up and celebrate the day.

Any day.

All days.

(Contest Time!) So this is what I’m asking of you: 

Get out your cameras. Get out your smartphones. Get out your mirrors or your friends. And start taking pictures.

I want you to take a picture that represents your struggle and how you made it here, today.

Whether it be, like mine seen above, of showing how long you’ve had your ostomy, or a picture holding up your favourite food that you can finally eat again, or maybe just a picture showing how you’re spreading ostomy awareness, whether you have an ostomy or not, I want to see it!

This is your chance to tell others about what you have gone through and how you were able to fight back. Show us how you can proudly say that “I am here today.”

So, get out your camera and start posting pictures to the Uncover Ostomy Facebook Page, now! Make sure to tell us how that picture represents your battle.

You can also post it on Twitter or Instagram by using the hashtag #UncoverOstomy

Then, on February 10th, I will pick the best story/picture to feature on the blog and the FB page. Pictures with lots of “likes” and shares will have a better chance of winning, so make sure to let your friends and family know you’ve submitted it.

These past 11 years have given me a second chance to live life and tell my story.

What’s yours?

Who Needs Sleep When You Have Netflix?

I’ve recently discovered that the best time to have a Netflix marathon is at 1am in the morning.

I’ve discovered that instead of rolling around in bed, twiddling my thumbs, and thinking about how stressed I am, I can just watch countless episodes of TV shows on Netflix until I literally fall asleep on my computer.

Otherwise, I won’t fall asleep.

I think, if I didn’t have Netflix, or similar forms of entertainment at my fingertips, I could go more than 2 days without sleeping a wink.(If I really tried, I could probably go 3, but I’ve heard people start hallucinating at that point…)

I’ve been having a really hard time sleeping lately.

And it’s not because I’m sitting in the living room and too lazy to get up to go to bed (which, used to be my excuse for staying up all hours of the night…), because I get into bed, every night, as a reasonable time, thanks to my boyfriend. We’re usually all tucked in and ready to count Z’s at around 11pm. He has a full-time job, so he has a reason to get to bed before dawn.

Night after night, we turn out the lights, say “I love you,” and then in about 15 minutes, he’s snoring away while I’m lying there, staring at the ceiling, literally feeling the cogs spinning in my head.

Sometimes, I get up to go to the bathroom.

Other times, I try and close my eyes to meditate.

I even try to count sheep.

Unfortunately, neither the quick trip to the bathroom, the meditation, nor the counting sheep can stop my brain from thinking about what’s got me extremely stressed.

My job hunt. I’m looking for a new job.

If you haven’t seen my endless tweets about how ridiculous the job market is, how annoying job hunting can be, or how I’m just ready to be hired, you may not have known. But, if you have seen them – I’m sorry.

Job hunting is hard. Between working at my current job, writing constant cover letter drafts, filling out applications, doing phone interviews, and showing up for in-person interviews… it’s crazy.

And I don’t know when this started to be a thing, but I have job, after job, after job asking me to do assignments for them! Like, they’re asking me to do work that they would be hiring someone to do.. but getting myself, and others, to do it for free. I mean, don’t get me wrong, I get the concept of it, where they want to see if I’m competent and what-not, but the type of work I’m being asked to do, and how much of it, is a little ridiculous. And, from what I’ve heard recently from a friend who just hired someone, the assignments are misleading – she hired someone who cannot do shit, despite completing the interview assignment properly.

It’s also insanely hard to get people to even take me seriously because of how young I am. If I’ve learned anything from my current job, it’s that it doesn’t matter how old you are, it’s all about what you know – and I know quite a lot, apparently. However, getting someone to take the time to even give me a chance to prove this, is turning out to be a difficult task.

Another huge concern of mine is the fact that stress contributes to Crohn’ disease flare-up… Well, stress contributes to a lot of health related issues, but in my case, Crohn’s is a huge concern. I haven’t had too much “tummy trouble” just yet, but if this continues, I may not remain as lucky.

Sigh.

I know I shouldn’t complain. I’m in a much better position than others that I know. I have good work experience, a great education, and lots of networking connections who are helping me out. Despite all this, I’m still extremely overwhelmed and severely lacking sleep.

While the boyfriend snores away, I find myself lying awake, wondering whether or not I’ll get a job I enjoy and whether I’ll get one that pays me enough to cover my bills.

And then I start to wonder if I’ll even get a job at all.

I wonder if I might become destitute.

Then I start picturing where I’ll have to live.

And then, I start wondering where I can find cardboard boxes big enough to use as a shelter for under the bridge I’ll inevitably end up calling home.

Without being able to stop, I begin to imagine my new friend Bob who used to be a successful investment banker who lost millions of dollars, was fired, and ended up under the same bridge, to which he now helps the other bums under the bridge with their investments of old beer bottles and pop can tabs to pay for the swimming lessons for his imaginary pet Lobster, Al.

And then somehow, I wake up the next morning.

Body half off the bed, drool coming down my mouth, and the blankets on the floor, I look up to see my boyfriend telling me it’s time to start the day.

Wearing his nicely fitted dress pants and his perfectly pressed button down shirt, he kisses me, still in my pjs and hair in a messy bun, goodbye, while he goes off to work hard at his great job.

I, on the other hand, move myself to the couch to continue my job hunt so that I won’t end up trading bottles to pay for those swimming lessons for Al.

A New Year’s Post.

It’s been a good year.

I secured a new home, found an amazing new boyfriend, “officially” graduated from NYU, did a lot of traveling, got some great work experience, and finally became a real adult.

(Sure, I did have my Crohn’s come back after 10 years, but who hasn’t? Am I right??)

But seriously, despite that little blip in the year, it’s all around been pretty great.

Especially for Uncover Ostomy. Seriously. And here are the numbers to prove it!

Since January 1st, 2013:

We’ve had exactly 44,247 new people visit the Uncover Ostomy website.

We’ve had 118,433 website page views.

We’ve reached 148 countries, including Sweden, the Philippines, Turkey, the Bahamas, Malaysia, Taiwan, Bangladesh, Cyprus, and even Uzbekistan (to just name a few…)

We’ve gotten over 1,400 new fans on the Facebook Page.

Posts on the Facebook page have accumulated a total of over 1.2 million impressions.

And the Facebook page has seen over 11,200 user interactions (that’s you guys!)

…And this is just some of the stats. Seriously. Amazing!

I know I say this all the time, but I sincerely attribute all of these stats to you. You guys are the ones who support the campaign, who share the campaign, and who live and breathe the values the campaign works to spread! Without you, this wouldn’t be possible.

So what would be a new year without a New Year’s resolution, or two?

Personally, my NY’s Resolutions are pretty simple. They include finding a new job (I’m currently on the hunt), exercising more, paying more attention to my health, and being happy. Nothing too crazy, but will make a huge impact on my life in 2014.

But how can we make a huge impact on ostomy stigma in 2014? I have a few ideas, and I hope you can help:

    1. Sharing more blog posts: Let’s keep on doing what we’ve been doing since Oct 2009! Like something I’ve written, send it out to your friends and family!
    2. Sharing more Facebook posts: Facebook has tweaked their background settings so that Page posts don’t show up as often as they used to. The more fans who share the Page’s posts, the more likely other users who don’t follow the Page will see them!
    3. Use Twitter more: I recently started up the #UncoverOstomy hashtag on Twitter. Everytime you tweet something that has to do with your ostomy, or about the campaign, include that hashtag in the tweet. It will be added to this list: Tweets about “#UncoverOstomy” that I can track and respond to, and will allows others to engage with you as well.
    4. Take more pictures in UO tshirts: I will be doing this, and I hope you’ll join me, in taking more pictures wearing the UO tshirts in public. Once you do, post them to your Facebook profile, Twitter, and the Uncover Ostomy page so we can create more positive content to share. Sharing these pictures on social media will continue to spread positive ostomy awareness! (There will be more tshirt sales, just hang tight!)
    5. Speaking: If you’re part of a community or organization that you believe would benefit from having me speak about Uncover Ostomy, send me a message and let’s set it up!
    6. Hangouts: Since Uncover Ostomy is a worldwide campaign, it’s hard for us to all get together. I’m hoping that by running Google Hangouts (video conferences), we can have a chance to get together, chat, and support. (Please let me know if this is something you would be interested in!)
    7. Contests: What fun is an online community without contests? There will be more…

Think we can handle these? I do.

So while I continue to look for a job after having just come back from the gym I can only hope that 2014 brings only good things.

The other day, a friend of mine said she could feel that this would be the best year yet. Let’s make it so.