be alive.

“To be alive is to totally and openly participate in the simplicity and elegance of here and now.”

I can’t believe in 3 weeks it will be a year that my jpouch has been built; so since my second surgery. Since the day of my first surgery all I can remember thinking about was when the day of my last surgery would be. Even though everyone around me was telling me not to wish time away, I couldn’t help but think how excited I would be the day that I wouldn’t have to wear an ostomy anymore.

Since I have been re-anastomosed (my intestines put back together, to put it graphically and frankly) I have been doing my best to recover from the trauma my body has suffered, while trying to live the normal, fast-paced life of a 25 year old.

Most of you who read this blog know that I had a little bit of trouble this past summer, but since the beginning of fall I have started to finally feel like myself again.

When I say myself, I can say with almost certainty that it is the self that I was before my colon became full of ulcers.

I have gotten to go back to the gym; I’m out enjoying my new city, apartment, friends and relationship. I’m going to the bathroom a normal amount of times for having a jpouch in a day (which for me is still about 7-10). I have even gotten to stop the iron infusions that Dr. Shen and Dr. Korkor thought I was going to have to keep getting for the foreseeable future.

The holidays are coming and what I’m most excited about this year that I haven’t been able to do for a few, is not having to wish time away.  Last year I had my ostomy and felt great, I was about 3 weeks out from my second surgery and was able to celebrate with my family without countless trips to the bathroom like the year before; but I was still longing for the day I could be normal again.

The Christmas before last was a terrible one for me. I could barely leave my room to eat Thanksgiving or Christmas dinner with my family. I was on the highest amount of medications at that time, including 6MP, which is a form of chemotherapy.

I remember my uncle hugging me and whispering to me, “I’m sorry that this is happening to you.”

“I’m sorry too,” I replied.

Are those memories sad to think about for myself and my family? Yes. But they are going to make this holiday season all the more better.  I can sit at a dinner table and say Grace with my family, and close my eyes without having to worry about when the pain will begin or when I will have to change my pouch. I can go to bars, concerts and dinners with my friends and have a drink or two without paying for it by having to stay up all night lying next to the toilet. I can shop without having to take medication to help get me through the trip. I can get up on Christmas morning and spend time with my parents and sisters and we can all finally enjoy the gift of health, which is the greatest gift of them all.

While I was sitting with a group of friends the other evening, eating and drinking, I realized how much the past 2 years have made me grateful for the small things in life. While I spent all of last year wishing time away, I realize now that I forgot to take a second and truly feel what it was like to have an ostomy and to be cured of a disease. Living in the moment is not something I wanted to do at all, but looking back it’s something that I wish I had taken more time to do.

The other night I realized that I was living, that I was happy and that I felt healthy. Those 3 components have not been together at the same time for me in what feels like forever. The moment the other night is what I had spent time wishing would come sooner, what I envisioned when I was laying in the hospital too tired or sick to move.

Wishing time away is never a good game plan to get you through anything tough in life, but what it did help me do was keep dreaming when my reality seemed like a nightmare. I would spend hours, days and months being poked and prodded; but what got me through those dark moments is the light that I saw at the end of the tunnel. The support of my family and friends who told me to keep going and that one day this would be a distant memory.

When others who are in the midst of their suffering email me asking for advice, the one line I catch myself saying over and over is to, “stay strong, keep in mind that this is not your forever.”

Take me for a perfect example. I had an incredibly awful case of fulminate ulcerative colitis, was going to the bathroom over 60 times per day at my worst and was in and out of the hospital quite a few times. I tried every single soul sucking medication out there, I had surgeries, had my colon removed, an ostomy and my insides re-arranged and still struggled to find that light that I had been hoping waiting for.  The best strategy that I maintained through all of it was telling myself that the pain would all be over soon.

But today, I’m here. I’m at the light. Do I still have tough days? Yes, but they are few and far between and when I do have a bad day or night, I usually know the reason and can fix it. And what makes those tough days feasible are the memories of the days when I was wishing time away. I can at last live in the now.

Because I absolutely LOVE my right now.

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