Posted by: Emily York | May 17, 2009

I’ll Never Miss Another Summer

When I decided to have ileostomy surgery for Crohn’s colitis, I remember thinking, I cannot miss another summer. Often I was more sick in the winter months, and I would think about how much better I would be in the summer, but when summer came I wasn’t really that much better. It was all relative. Too often, I couldn’t go swimming or on the hike I’d planned, or join others in a birdwatching adventure. We would go camping, but it was always difficult to manage the bathrooming, especially at night. And I was always afraid when we went on a hike that I would just get too exhausted to make it back. Other times the trips had to be cancelled, always a major disappointment.

There’s nothing worse than being at home, inside, in bed, on a hot summer day. You’re still in whatever you slept in, your hair is wild, you’re pale and skinny and you’re wondering what, if anything, you might be able to eat that day. And outside, you hear the sound of children playing, and cars zipping by on their way to do something fun, and you swear you can smell the chlorine of some pool, and the freshly mown grass. You hear the birds singing. Inside it is dark. It’s another throw-away day.

Today is a beautiful Sunday. The sky is Colorado blue. The trees are plush with new leaves. Birds are singing. It’s supposed to be in the mid-eightees, one of the warmest days so far this year. I slept in, all the way until 8 AM. I’m dressed and ready for the day. I’m going to go to the coffee shop and work on my novel, then pick up some ingredients for lemon-lime bars and go home and bake them. I’ll probably turn on my iPod and sing as loud as I can. All of the windows will be open, and the cats will be begging me to take them outside, and eventually I’ll give in and we’ll go outside together and feel the grass in our bare toes. I’ll do kung fu while they monitor the bunny rabbits. This afternoon, around four, we’ll go to some friends’ house for a campfire in their backyard, and we’ll eat, drink, and be merry as the sun sets and the stars come out.

It’s not even technically summer yet, but already I can feel it. And this time, I know that I will enjoy it. Every minute of it.


Responses

  1. hi just got diagnosed with crohn’s last week – scared to death…..

    • It’s a very scary thing. And just as the disease takes a lot out of you, it also takes a lot of emotional energy to process and comes to terms with the fact that you’ve been diagnosed with a chronic disease. Not everyone experiences it the same way. Not everyone gets it as bad as I got it, and some people respond very well to one or more of the available medications. I hope that you will be in this category. Good luck to you, and feel free to email me if you ever just want to talk to someone who’s been there.

  2. this is exactly how i feel today. almost 2 weeks post surgery and i already feel like i am gaining my summer back.

  3. What a helpful website to find on such a dark, throwaway day. Your description of where you live now is so peaceful, not so much in your surroundings, but in your voice.
    Also, too, I never thought about being somewhere where I haven’t been sick. At 51, I hope to find those places.
    I had rectal cancer and having pelvic abscesses recurrently, they did the ostomy. And now 5 years later, when I want to celebrate no cancer recurrence, I’ve spent 6 mos. so sick and was told I need to go back to the ostomy. So, I sit here, trying to remember how I made it work, and I did. I’ll do it again but it just makes me cry right now, but I’ll find support and inspiration in the stories of others and I really care about my sexuality because I only started to feel beautiful when I was 44…I just wanted it to continue.
    Thank you
    Kathleen

    • Hi Kathleen – I know that the ostomy nurses always say, “Before you know it, it’ll be old hat.” But it’s so true! I know it is very overwhelming at first, and I don’t think there’s a person out there who hasn’t had at least one good cry after surgery. Still, you’ll be on to healthy, happy, and beautiful before long. Did you read my post “Beautiful Body”? Just remember – healthy is way sexier than sick, even if healthy is with an ostomy!

  4. Hi. Today was a throw-away summer day for me. I’m not ready to get back out there yet, but I’m really glad to know you were where I am.
    Light at the end of the tunnel, you know?


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