The Future That Was Shattered - Uncover Ostomy
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The Future That Was Shattered

My arms were wrapped around them. All of them at once.

Crying. Sobbing. Shaking.

I stood stoic, knowing I couldn’t show the same emotion. I had to be the strong one.

These little girls and boys, whom I’ve known for years – mentored for years – in my arms. Scared, confused, and broken.

1 year ago.

—-

Time is a theme I reference often.

I often talk about the importance of living in the moment, the need to reflect on the past, and the understanding that it is something you can never get back. Time, especially for someone with a Crohnic illness, is a fragile entity. Not knowing whether you will be able to enjoy it, whether you’ll loath, or whether it really exists at all.

Living with Crohn’s disease, I have experienced it all. Weeks, turned months, turned years of pain, where I couldn’t enjoy the simple things like playing in the snow with my friends on a cold winter’s day, or enjoying a lick of ice cream under the heat of the summer sun. Waking up every morning wishing I could just go back to sleep because every second I was awake – every second I was conscious – was another second I was in pain. And when I’d look at the clock, aghast at the hours that had gone by from what had felt like just a moment, I’d wonder what happened to the time that didn’t seem to exist at all in the haze of the drugs.

I’m not the only one who’s felt this. We have all, at some point in our lives experienced this almost, existential, out-of-body relationship with time. Waking up one morning and realizing that a year has passed.

I felt that way at 12am this morning. I couldn’t believe it that 365 days had passed since she was gone.

—-

Last year, around this time, I was finishing up my Masters degree, working a job that I loved, and living with the man I was sure I would marry. I was spending time with the family I loved and the friends I adored and enjoying every second. Embracing every second.

Last year at this very time, I got a phone call.

“You need to come now.”

It was her sister letting me know the time had come to say my goodbyes.

—-

Last night, at 12am, I thought about all that has changed in those 365 days and I almost couldn’t believe it had all happened in one year. I finished school. I ended the relationship that I thought would be my last. I moved in with my mother. I started a new job. I made new friends and lost some old. I traveled, met new people, and experienced things that took me out of my comfort zone. I got another new job, bought my first place, and found a new boyfriend who makes me happier than anything in the world. I fell out of remission, only to fight back with everything in me. And in all of those 365 days, I have looked back and been thankful that I am alive.

Not everyone is as lucky. As I, once again, learned on July 26th, 2012.

—-

Some of you may remember this post. This post was about a wonderful girl named Alison Atkins.

She was a girl I met a few years back, who had been suffering with intestinal issues like myself. After speaking to both her parents and to her, they proceeded forward with ostomy surgery. Her frightened mother and father expressed that they didn’t know what the surgery would do to her – whether she’d be emotionally ruined by the change to her body and whether or not she would isolate herself from the world.

After meeting her, even after only a few minutes, I knew that this strong, young woman, would be just fine.

And she was. She wore her ostomy with pride. So much pride, in fact, that she had pictures taken, showing off her ostomy, just like the ones you see here. She was an inspiration not only to others all around her, but a special inspiration to me. She was the constant reminder that I needed to keep doing what I was doing.

Unfortunately, despite her ostomy, she was battling the disease. She was still sick, still in pain, and it almost looked like there was no way out. But it was hard to worry about her. It’s always hard to worry about someone whose giant, flawless smile constantly reassured you that everything was ok. Because it did that. She was always smiling. That’s why, when 365 days ago, I received that call, I almost didn’t believe it.

Alison had been found, unresponsive.

—-

Today, I met up with an old ostomy friend, (who some of you may know – MJ Bouey). We hadn’t seen each other in a number of months, (actually, I hadn’t seen her since she was in the hospital after her kidney transplant), but she was looking well and it put a smile on my face. We spent the first half of our lunch date catching up on each other’s lives. What had happened in the last few months, how we were both feeling, and making plans to do things together again soon.

Because we could do that – make future plans.

Then, of course, Alison came up in conversation. There wasn’t much said aloud. Just the usual. But it didn’t really need to be said; it was obvious. We had that quiet, comfortable silence where you know exactly what the other person is thinking. We were both thinking that Alison was amazing and we missed her.

It was nice to be around a friend who understood.

—-

Sniffling, with tears running down our cheeks, we filled her hospital room, 1 year ago. We stood, hand-in-hand, silent, but with that same quiet comfort of knowing we could all read each other’s minds. We were going to get through this.

I stood with my group of ostomy kids. The ones I had known for years and years. The one’s that have shared the laughter, the stories, the personal development.. the word.

Ostomy.

We were a family. And we were losing one of our own.

One by one, we walked up to her bed.

One by one, we held her hand,

One by one, we said goodbye to a brave girl who lost the fight.

—-

There are 365 days, 12 months, 52 weeks, 8766 hours, 525949 minutes, and 31,536 000 seconds in a year.

Enjoy them all.

For those who can’t.

Jessica Grossman
info@uncoverostomy.org
4 Comments
  • Alisha Donaldson
    Posted at 22:33h, 26 July Reply

    My prayers go out to her family. I as well am changing my life according to the medical traumas that have arisen in my lifetime. I’m majoring in communications to be a role model and support system for young kids and encourage and inspire them. I also want to be an advocate for ostomates. I want to model, share my stories, struggles and hear others stories as well. I’m in san diego ca. And have a hard time finding anyone that knows or who can point me. In a right direction to start doing so. Ostomy camps, voluteering. With young kids, etc. If you can help in any way it would be much appreciated. I want to see people grow be strong beautiful and successful. U can also contact me on my crohns-ostomy page.Thank you. Alisha D

  • Amy Schachter
    Posted at 13:19h, 27 July Reply

    Beautiful Jess.

  • Lisa Doersam
    Posted at 21:16h, 27 July Reply

    My heart goes out to your friend…. We never know when it’s our last day and it is scary!!!
    I am 48 and have been sick since i was 23, and i have a rare bowel disease called Digits…
    For almost 20 years i spent half of that time in and our of the Hospital. Saw one doctor after another
    and was treated like i was making it all up, i was crazy! I could of given in to them but i knew i was sick and no way were they going to tell me any different!!! So i had a Major obstruction and another trip in the Ambulance, but this time i Met Doctor T. and he knew what was wrong and so i now have an ileostomy.
    It has been almost 8 years and i have had 3 more operations. But i am alive and can watch my daughter grow and love my family, cause that is all we really have!

    Have to say i am really having a tough time dealing with my new life, and it’s so hard when i run into someone they say oh you look GREAT meanwhile i am in such pain….. I have pushed the few friends i have away or they just left me…. I am struggling and don’t know what to do…..

    I hope you may understand me, and if not it is ok
    God Bless your friend as she will be watching over you ….

    Lisa D

  • John Tischio
    Posted at 16:43h, 28 July Reply

    I am so glad I found you all. I have had a colostomy for almost 40 years. I got it when I was 5. I have been having some issues and its really nice to know that I am not alone. I am looking for some groups I can join for support and feedback.

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