Looking back over the past 12 months I can honestly say that it has been one of the hardest parts of my journey thus far. It has definitely been a year of loss and tears–feelings of hopelessness came with a resounding blow. I could lament and list all the blows I have taken, but I will spare you and myself from having to go over them again because the place I am heading toward is acceptance, and THAT is not such a bad place to be hiking towards.
September 2nd, 2011, marked a pinnacle point in my journey. It is the day I underwent surgery to receive a permanent ileostomy. Unless one goes through a surgery that physically changes their appearance and anatomy, it is quite difficult to explain the psychological and emotional feelings of what that entails. For someone like me, who has gone through three ostomies: 2 temporary and 1 permanent, it wasn’t something that with which I was unfamiliar with, but it was a trial in letting go of hope; hope for a turn-around in this disease, and a hope that my body will appear as ‘normal’ on the outside. It was a challenge to understand that this will improve my life.
September 2011-Hospital
The first two weeks following surgery went great, but then complications set in, and once again, I was hospitalized for nine days with a serious infection and abscess from surgery. For some reason, this was a moment of incredible defeat for me. I had undergone this drastic surgery to improve life only to end back in the hospital with more complications. I kept thinking that my whole life will be spent paying a price for everything that happens to me, and no matter what route I take it is still wrought with obstacles. Honestly, it was almost more than I could take. It was then, in the hospital, my mom said there was too much I haven’t done in life, and I have to fight a little harder to get well. She told me that if I could set a goal to work toward getting healthier for my 21st birthday, we would do something exciting.
Setting a Goal to Recover
Two months later, on my 21st birthday I felt well enough. So, we travelled to New York City-even though it was a short trip-it was incredible. For my first time in years, I was able to leave home and travel for vacation purpose and not health or medical related. That is a huge deal. HUGE! I am not sure if many people can understand fully what it means to travel for the sheer enjoyment of it!! For the past 5 years, 98% of the travel has been to visit doctors, hospitals, specialists, to have surgery, special testing, second, third or fourth opinions, but never for the pure sake of enjoyment. Over the years, I watched as both my brothers traveled all the time! Both of them left home to study abroad-one to Spain, and one to Switzerland, while I was too sick to even attend school. But this was my time. New York City, HERE I COME!
New York is Where I’d Rather Be
We arrived early on our first day and had time to see some sights. My adrenaline was pumping off the charts. Fatigue? Forget about it! Low energy? Wha!? That little pain? What pain? My mind was working overtime to tell myself that NOTHING better go wrong. My Health would not ruin this moment for me!
We headed out from the airport to our hotel in a New York taxi to begin my first adventure. Picture me in the back seat of the taxi, beaming from ear to ear, with a camera in hand, shooting a hundred pictures of the sights, from the window, OOOH-ing and AAAHH-ing at everything exciting. I was the epitome of your typical tourist. I was shameless about it! I did not care; nothing and no one would let the wind out of my sails! I was going to soak up every moment: feel, taste, see, hear– to bring to life all my senses to experience all this excitement! It felt so good. NO, not just good, this was amazing! Even when our taxi driver cut someone off in traffic, and we got cursed at, was awesome! We just got yelled at in a taxi driving around in New York City!
Happy New York Birthday
Once we arrived to our hotel, there were more surprises! A birthday cake and candles were in the room waiting for us! Sneaky planning ahead! With a view of the Empire State Building right outside our window, we enjoyed cake and juice, and we started our plans for the five days that we were going to stay there! First on the agenda was to pick up our all-access New York City passes. We headed to Time Square and the Planet Hollywood to do that. Oh my gosh—Time Square! I still can’t believe I stood there in the midst of all the New York chaos! It was almost too overwhelming and over-stimulating to this small town girl that lives on a ranch in Texas!
Birthday Cake
We picked up our passes and had a soda at the Planet Hollywood where the staff sang Happy Birthday to me! I was flying high, and then, it hit me for the first time of many during the week—I am on vacation. I am here for fun. No doctors or hospitals. This was just for me. The sting of tears came and went, but for a moment I had to say a prayer of thanks. So this is what it feels like, huh? This is what everyone talks about.
During the entire trip I was Face-booking every moment to share with my daddy, who stayed behind in Texas. I posted tons of photos! (I took over a thousand) I wanted to, not only have a timeline to share with Daddy, but also to have the memories to look back on when this was over!
Our first night was spent in Time Square, seeing the sights and soaking it all up, but we had a long day and ended it early as we were in bed by 11. Before falling asleep, so much was going through my head, but one thing I kept thinking was that travelling to New York with an ostomy was not difficult at all. Although finding a public bathroom was a little bit of an issue, nothing about my ostomy posed a problem. I kept thinking, however, that a few years ago this would have been completely impossible. For another time on this journey toward acceptance I had to say thanks for having the freedom my ostomy has given me to enjoy this moment. I closed my eyes, and I am sure I slept with a smile on my face.
Times Square
Where Dreams are Made of
The next several days were a whirlwind of activities. We saw so many exciting places in New York it is hard to believe we did as much as we did. We went to the top of the Empire State building where I promised to call my brothers. Nyle and Nabeel shared my excitement so much! We walked through Manhattan, learned to ride the subway, walk through “Occupy Wall Street,” and then to the 9/11 Memorial at the site of the World Trade Center.
I have to say the 9/11 Memorial was the most heartbreaking, humbling moment of the week. I stood at the memorial site and walked through this serene place and could not help the tears that I shed as I read the names of each victim. I was standing at the fountain watching a gentleman touching a name, I walked a few feet away to give him privacy and felt him staring at me. I looked at him and asked if he knew someone whose name was on here. He pointed to the name of his best friend. I was so deeply moved and so sorry for his loss that I broke down in tears. I could not help myself. Maybe that is normal, maybe not. But suddenly it made so much sense that we are ALL on a journey. We all have obstacles and trials and pain. We all lose. We all suffer blows. Some are so much more devastating than others. Mine pale so very much in comparison. I have so much to be thankful for! (I don’t know who you are; stranger at the WTC site, but you impacted my life in that moment in a very profound way.)
9/11 Memorial--World Trade Center Site
Throughout the week, the list of activities grew: a water taxi down the Hudson River to see the Statue of Liberty and Manhattan from the water, Little Italy, Chinatown, more subway rides, Battery Park, Central Park, The Metropolitan Museum of Art to see Rediscovering Islam through the Arab World (which was amazing and profound), making my 11-11-11 at 11:11 wish in New York was exciting and kind of epic, Museum Of Worship, New York City Library to see the Malcolm X exhibit, Magnolia Bakery for red velvet cupcakes, and Grand Central Station! Through most of it I felt pretty good. I did get seasick on the water taxi and had to take it a little slow. It is like I lived a lifetime in those few days. Toward the end of the trip, we took in a Broadway show. We saw the Lion King in the front row of the balcony, and I was mesmerized. It was an amazing, out of this world experience! This entire trip was off-the-charts special. I was so happy to have friends and family encouraging and joining me on this journey even from a distance. It made sharing it so much more thrilling! I saw so many places just from the suggestions of others that I would not have gone to without their advice!
Statue of Liberty
Be It Ever So Humble, There’s No Place Like Home
Late Saturday night, we arrived back home to Texas. I was ready to come home. I was ready for the trip to be over. Although exciting and adventurous, I am definitely a homebody. After all that adventure and excitement it did take a toll on my body. I used up the last reserves of adrenaline and energy I had to get through it all and it came crashing down as I hit my bed at home. I slept for 14 hours. It took a few days to get back to “normal” after all that experience, but if you ask me if it was worth it, I would give you a loud and resounding–YES!!!
Grand Central Station. I *heart* NY
“Though we travel the world over to find the beautiful, we must carry it with us or we find it not.” ~Ralph Waldo Emerson
~Nadia
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