Saturday, September 3, 2016

my two year lifetime

A lot can change in two years. The first week of September is always an emotional and challenging week for me. Its hard to wrap my head around the fact that it has already been two years since my emergency proctocolectomy. It seems like it was yesterday and a lifetime ago all at the same time…

When I really think about it though, for me, it was a lifetime ago. A short two year lifetime ago. Before September 3, 2014 I didn’t really know who I was. I was struggling with this identity of being a fun, energetic, happy young adult trapped in a sick girls body who I didn’t know, recognize, or like. I was “me” but I wasn’t. Since my diagnosis of crohns at 18 I have come to terms with the fact that I will always be a girl with a chronic disease. I learned to cope with and accept it. What I needed to learn the hard way was that there really is no way to cope with a disease such as crohns because it is constantly changing. No two days are ever the same and you never know what tomorrow will hold for you. Even on your good days, you’re sick. This becomes a sad part of your life. I have always embraced the challenge of accepting my body and all the different challenges that comes with it. I had never heard the words crohns before that phone call from my doctor in 2008 and from that moment on I promised myself that I would make it my lifes mission to inform as many people as I could about this disease that stole so much from me. Crohns has taken more from me than I could ever imagine it would, but it has also given me more in return than I could have ever asked for. It taught me compassion, it taught me empathy, it taught me that it is ok to ask for help, and most importantly, it taught me about a strength deep inside me I never knew existed. Sometimes I sit and I wonder who I would be and what choices I would have made if I never had to deal with this disease, and to be honest with you, I don’t know that I like the answer. Its so easy to look at someone in my situation and feel sorry for me, its most peoples first reaction. Once you get to know me, you will know that this couldn’t be further from the truth. Don’t feel sorry for me, because I know who I am, and for that I thank my crohns disease.

            On this week in 2014 I was preparing myself for what would be the biggest gamechanger in my disease progression so far. Learning to live with an ostomy bag was, and still is, hard to cope with. When I was told I would need this bag for the rest of my life (at the age of 24), it felt to me at first like there was a death in the family. A part of me died that day. My whole life as I knew it was turned upside down and for once I had no control over what was coming. I was entering an uncharted territory and while I had a wonderful support group around me, I was absolutely alone because unless you have it, you don’t get it. Two years ago I was experiencing a lot of “lasts”, some, stranger than others. You all may laugh, but farting. I will never fart again. I can no longer take long hot showers. I cant eat mushrooms, or pineapple, or brussel sprouts. I would never have a soft, smooth stomach that my husband could rest his head on. These may all seem like small things to you, but to me, they were lifechanging, and still are. What I didn’t realize at the time was, two years later, I wouldn’t remember this whole situations as a “death” but rather as the start of a new life. I will always consider September 3 as a “birthday” of sorts to my ostomy.

Dear ostomy,
Its hard to believe we have made it through two years together. There have been (countless) times where I wanted to give up, where I thought we would never be able to make this work. When we first met, I cant even describe to you the resentment I felt towards you. I never wanted you. I told numerous doctors to let me die before giving me an ostomy bag. I was a kid when I met you, and now, because of you, I have grown up. I will never be able to put into words what you have done for me and my quality of life. I simply didn’t have a quality of life before you came along, and together we have accomplished more then I ever thought possible. Its only been two years, but I find myself not being able to remember what life used to be like without you. This is probably because some of my best memories have you in them, and it isn’t hard to understand why. You saved my life on so many levels. Physically and emotionally I was ready to give up two years ago, and you were able to give me the gift of a lifetime; you made me healthy. Being healthy is something that I think a lot of people take for granted. Until you or someone you love is sick, youll never understand how lucky you are to be able to do day to day activities. Every single thing I do in my life I know I have you to thank for, because I know that two years ago without you it wouldn’t have been possible. Sometimes I get emotional thinking about how people I meet in my life now have NO idea what it took to get to where we are today. They will never be able to see the struggle, pain, and determination it took to get to this point in my life, and that is because I am not sick anymore, and I owe that to you, ostomy bag. Two years may seem like a long time, but in the bigger picture of things, we have a long time left together. I may not like you all the time, some days I will cry and hate you, but I promise to always remember a time when I didn’t have you, and I will associate those times with pain that I no longer feel because of you. I promise you to continue to do my part to break the stigma and raise awareness about you, and most importantly I promise to live my life to the fullest, never take a breathe for granted, and be the best me I can be. Happy birthday ostomy.

Cheers,

C

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