Throughout this terrible situation that has unreasonably happened to me, I have put on a brave face. I wake up every morning with the intent to do the very best that I can, even though my heart is broken for many reasons.
I can say that what gets most people through hard times are their support systems. While I can say that I have had a decent one, how can someone with Crohn’s or colitis possibly get others to understand the pain and the confusion they feel when you know they they could never understand. How do you find the true people that will be there for you no matter what? That will catch you when you fall, push you when you feel like you can’t even get out of bed.
For me, I have mainly relied on myself for all of that. I have kept my emotions inside, fought an extremely hard battle that I believed from the second I was diagnosed I could handle myself. What I didn’t realize then is how much pain these diseases really cause. Many outsiders may think that the physical pain is the worst part. By far, it is not. The mental pain that Crohn’s and colitis bring are the gut wrenching part. The unpredictability, the unrelenting anxieties, the loss of self confidence that keeps every normal person going every day.
When I found out I had to get an ostomy, my biggest fear was losing myself. That fear did come true, because I am not the same person I was 2 years ago. Both for the good and the bad. Right now, I struggle so much with affection and showing the people closest to me how I feel. I get punished for it a lot, in ways that I certainly don’t deserve. That punishment only makes me feel worse, when I should be reminded every day how proud I should be of myself. I wake up, put a smile on my face as I change my pouch that I absolutely hate, clean my apartment, go to the gym, grocery shop, make myself look presentable as possible, go home, cook dinner most nights and work my butt off trying to do the best I can to spread awareness about these diseases so others can find solace in their pain. When is it going to be my turn? When can I look in the mirror again and say, “I recognize you, you are beautiful. You work so hard every day and after everything you’ve been through you deserve all of the happiness in the world. You should feel on top of the world for everything you’re doing and have done. You should be stronger, braver, feel like a better person.”
But feeling like that is hard when I stop to really think about everything that happened. When I re-open the wounds of how sick I truly was. When I am reminded that I am going to be very sick again in only 6 weeks. Just when I feel like I am getting stronger, I am pushed back down by the memories of the pain, the illness, the uncertainty, the nightmare that I lived for longer than anyone deserves. When I stop to think, “why me?” is when my demons truly come out. Because the fact of the matter is I didn’t deserve this. Why did this happen? Will I ever know? Will I ever be brave enough to find out? It certainly makes the search even more difficult when I look into the face of others who truly care for me, my parents, my sisters. If anyone feels more heartbroken than me it’s them. They have been the only 4 people I can say truly have stood by my side. That understand my weaknesses, my faults, my insecurities and will always accept me for the person I am today. My mom always reminds me, “you’ve been through so much, I don’t know how you survived.” My father, who I love with everything I have, who as a doctor himself, watched his daughter, barely able to breathe from pain, fight as hard as she could, until one day she couldn’t do it anymore. Who cried after walking out of my room every single day because “the light was gone from my eyes.” How, as a daughter who loves her parents more than anything in this world, do you deal with that sanely? My dad, tells me every single day how proud he is of me. How he is in disbelief that I took this situation and I have turned myself into such a warrior. I took those ostomies and I taught myself how to change them, how to deal with all of it on my own. I took the pain from my disease and I turned it into a motivational device.
I constantly brush aside my true feelings and try to make myself appear stronger than what I am. But there are days, like today, when those demons come out and bring back horrible memories. Memories of a time I’ll never forget. Memories and mean things said that make me want to run home and hide in my room until this is all over. What I forget to realize is that this will never be over. I will carry this with me for the rest of my life. The people that love me the most will carry this with them for the rest of their lives. All of the tears and the pain have made us all different people. For the people I know for certain love and care about me the most, it has made them stronger. Honestly, I’m still waiting to be a stronger person. Do I think that I am brave? Yes. Do I think that I have any self confidence? Absolutely not. That is the hardest thing for me right now. This disease and this ostomy are thieves, they stole from me the belief that I am a beautiful girl. That I can put on anything and look great. That I can go out in public and face the world knowing that I am a lovely person, inside and out.
I wish I had more people that told me that. Is that selfish? Maybe. But I am longing for the people that I love outside of my family to tell me how proud they are of me. To tell me that I am an inspiration to them, that they will stand by me forever, no matter what happens. To tell me that they understand why I feel the way I do sometimes and they could never imagine going through what I did. The pain and the suffering was insurmountable and they are so proud that they made it through all of that with me. It really is too bad that I can’t say there is anyone outside of my family that witnessed the worst times in my life, which is sad, because there should be at least one other person I can say that for. Those select few people that I feel like should have been there more, that if you would have told me a year ago that they will defy me, bring me down, I would have laughed in your face in disbelief.
I pride myself on always being a good friend, sister, daughter, girlfriend regardless of how I look or feel. Sometimes certain people and memories make me question that. Am I really? Have I done the best I can? AM I doing the best I can? I know I try to, so why isn’t that good enough? What did I and what do I have to do to make them understand? Its a feeling worse than disappointment, it truly is the worst heartbreak I’ve ever felt.
I am thankful every single day that I have a family that reflects me in a positive light. Through this unfortunate situation, people have shown me their true colors. Though so upsetting and unbelievable, sometimes when it comes down to it, the only person you have is yourself. I have to come to terms with that. Maybe when my surgeon gives me my jpouch, he will give me my confidence back. The one thing he cannot surgically remove are the memories, the pain and the longing for my old self.