When people talk about the 4th of July, they immediately discuss the fireworks and fun, the BBQ they indulged in—all of that great stuff. And when they ask how my 4th of July was, it’s always the same answer: “It was okay”. The reason for that is because, even though I’m a self-proclaimed Hoosier at heart and someone who plans on moving to the U.S soon, I haven’t ever really celebrated the day with anyone. To me, it’s just another day because discussing the day forcefully feeds me a memory from five years ago I can never wipe clean. I’m immediately thrown back to how I spent my 4th of July in a hospital some five years ago now, barely watching Mr. Smith Goes To Washington on TV in a quiet, cold waiting room, awaiting a doctor to tell me that everything was going to be okay.
Everything was going to be fine.
With my head in my hands, I was smack-dab in the middle of that surreal moment to what life was all about: Unpredictability. I’m someone who needs to know answers when things happen and can be quite impatient. I guess that’s been my biggest test in life—to become more patient. And it’s funny because since 2009, God has shown me through the love in my heart and faith from my soul that patience is a necessity if I really want to hear what He’s saying and showing me.
I don’t share much about my private life online because I did that once and I got hurt by someone I trusted. The closest I’ve come to really divulging a part of my life was in a piece for healthcare in the U.S over at Newsvine after my best friend suggested I go ahead and do it. In many ways, social media has sort of created an introverted version of me and for good reason. I think it does that with everyone though, but anyway, if you know me well enough (and shared that summer with me) you know what July 4th means.
Let me start by saying that I have an amazing sister. She has always been there for me and I love her more than anything. The best thing about being the youngest and having an older sister was that from the moment I was born, I always had a friend—a forever friend—who would constantly look out for me and be there for me. It’s hard enough to make friends in this world and to have them stay and fight for you, but to have one that was given to me as a gift is a true blessing. I look up to her more than anything and am truly happy she is my sister and my best friend.
When my sister turned 17, things started changing. I couldn’t play with her outside much because she would complain of a constant, excruciating pain in her stomach and was running to the bathroom quite often. She would stay in bed for hours and began facing what doctors primarily diagnosed as “growth spurts” or “menstruating pains”. After many doctors and second opinions, my sister was finally diagnosed with Crohn’s Disease. At this point in life, the Internet didn’t really exist and it was something that no one really knew much about. Today, a lot of people know about Crohn’s and what it’s all about.
For those who are unaware, here is an excerpt from the Mayo Clinic:
Crohn's Disease is an inflammatory bowel disease (IBD). It causes inflammation of the lining of your digestive tract, which can lead to abdominal pain, severe diarrhea and even malnutrition. Inflammation caused by Crohn's disease can involve different areas of the digestive tract in different people. The inflammation caused by Crohn's disease often spreads deep into the layers of affected bowel tissue. Like ulcerative colitis, another common IBD, Crohn'sdisease can be both painful and debilitating, and sometimes may lead to life-threatening complications. While there's no known cure for Crohn's disease, therapies can greatly reduce the signs and symptoms of Crohn's disease and even bring about long-term remission. With treatment, many people with Crohn's disease are able to function well.
She was prescribed Pentasa at the age of 17, 18 and was doing well for a while. Shortly before her high school graduation, my sister starting feeling new pains. It was later discovered she had a fistula. She had her first operation in 2000 and that was a battle in itself. She didn’t feel normal and was not doing all too good self-esteem-wise. She gave up a lot just to be “normal”. At one point, a lot of her friends didn’t believe she could be in such pain and regarded her calling off invites to parties and get-togethers as nothing more than “excuses”. It was hard. I saw her go through a very dark period and it was hurting me seeing her go through that. My big sister. My hero. And there was nothing I could do about it.
After my high school graduation in 2003, my family decided to move up north to the countryside as it would do some good for us. It was a good move and one I don’t regret because I discovered who my real friends were because of it. You see, if friends are true friends, they will make the trek. Anyway, I knew the move would be good for us and it was for the first few months. My sister loved horses and our new house would overlook a stable where she could sit for hours and watch horses gallop by. In such a sense, she would regain aspects of her childhood that she lost from the disease just by sitting and admiring the horses. However, that realm of calm would soon vanish as she would start getting flare-ups, would throw up when food didn’t agree with her, and lost a ton of weight because of it. Her flare-ups lasted for almost five years with not a single doctor knowing what would trigger her flare-ups, what caused them, and what was truly happening inside her as every blood test and CT Scan showed up “normal”. So many doctors asked her to make a food journal and when she did, the alleged “safe” foods would later turn on her.
It was in 2009 that her new specialist (because we saw so many) diagnosed her, said Pentasa had stopped working and decided she would need to be admitted to the hospital after testing a new-found lump and discovering an abnormality. It was only suppose to take a weekend, but it ended up being about a month and a half because the abscess would not stop draining. Throughout that month and a half, my sister would lose a significant amount of weight and look incredibly gaunt. At one point, her jeans would just slip off her waist and she would resort to wearing only dresses. It was shocking and troubling. It made me mad, especially after having a conversation with a friend who very well knew I was busy that summer in the hospital with my sister, but decided to ask me what I was busy doing and then began complaining about how not a single pair of jeans would fit her and how it was “so annoying”. Yeah. I bet it was.
When it was time for the last option (surgery), things weren’t looking good. The surgeons would come in and look at my sister and walk out because it was “not doable” due to her thin, weak stature. There was a point when I thought for a second, “What’s going to happen then?” They would say things like, “Good luck” and “Hope she gets better.” It was as if they knew something I didn’t. They all made it seem that she was going to die and left her hopeless. Her case was helpless.
With the help of my sister’s persistent gastroenterologist, a surgeon finally came in that same week and said it had to be done and couldn’t leave her like this, so he did it two days later. She went in for surgery on July 4, 2009 and it was a day I really can’t forget. Sitting in that waiting room was torment because for a split second, I thought if he comes out and says something I didn’t want to hear, I wouldn’t have a sister anymore. And it would be just like that. A lifetime lived, and a forever friend gone in a second. I would be alone and lose every ounce of myself. Would she know how much I loved her? Would she know I wanted to help her all these years but couldn’t? Would she know I would be lost? I sat there with my head in my hands, staring at the white tiles on the floor and wondering, “How much longer?” as I could hear Mr. Smith Goes To Washington play in the background. (The Jimmy Stewart moniker has been another part of my life’s heartbreak, but that’s another story and one I probably will take to my grave. Let’s just say, it was a weird summer for sure. One that definitely felt like toying with my heart…)
I don’t remember how long surgery was. At one point, I remember looking at the clock and then leaning on my father’s shoulder, quietly crying and making sure he nor my mother would hear the sounds that accompany tears. After a while, the doctor came out quite quickly—almost like a bolt of lightning—with a real somber look on his face. I can still feel my heart sink recalling that memory because of his expression. It was…expressionless. I will never forget how he came out and looked at us, and then he said, “She’s okay”. It was a surreal moment proceeded by his voice, booming through my ears and telling my family and I what he discovered inside her (it wasn’t pretty). He told us that he performed an ileocecal bowel resection, but I don’t remember anything else. I just remember crying after he left, hugging my father and my mother, and then wondering, “What’s going to happen now?”
Five years later and my sister is thank God, healthy. You may ask at the end of this post, why did I write about this? Growing up, I was told to read and understand life from the 3 Holy Books: the Bible, the Torah, and the Qu’ran. I believe in the words by Jesus to his disciples when he said, “In the world ye shall have tribulation.” We’re going to be tested through our whole life and that’s just a fact. In Islam, it’s been said that “If God intends good for someone, then He afflicts him with trials.” It may not seem understandable at first, but the trials we face in life can be a sign that God intends good for us, because through the challenges we face, we have the opportunity to perform good deeds.
I’m not sure what my sister’s health condition was suppose to initially teach me (or my family), but I’m sure there was something I learned in hindsight that makes me who I am today. I loved her yesterday, and that just grows every minute today. That being said, on the point of tribulation: It’s important to remember dark periods in our life because not only do they make you stronger, but they ground you, they humble you—they make you see the light in things. Without challenges or problems, we wouldn’t grow. We wouldn’t know ourselves—who we truly are. Maybe I’ve grown emotionally and just never noticed, but the growth process is an innate characteristic of life that is suppose to have us rising above the issues we face so that we’re more focused and confident, as well able to have faith in not just the Universe and God, but ourselves.
I’m not Pat Solitano when the 4th of July rolls by, but I do remember what this day stands for in my realm. My sister gained her own independence, confidence with a restored faith. She’s relatively “normal” now and since the resection, can eat better and just feels better. She’s gained weight and is the same sister I grew up with. She fought Crohn’s with a solid fist and has been able to take back her life from a disease that robbed her of her adolescent years. I’m really proud of who she is and what she can and will become. It’s a slow start, but she’s on her way.