The Second Time Around

When I was first diagnosed with UC four years ago I had no idea what was happening. My doctors and nurses were basically speaking another language to me as they threw around medical terms. I had never heard of IBD or ulcerative colitis in my life. I felt as though I was expected to understand my diagnosis and all it entailed immediately but it was so hard. I had been healthy my entire life. I felt as though my world had flipped upside down in a matter of seconds, as fast as someone flicking a light switch. In what felt like no time at all, my life as I knew it was entirely over.

After three days in a hospital bed I was discharged and on my way home. August of 2013 was spent on my basement couch, sleeping nearly all day everyday. In between naps I watched old episodes of The Hills. The only things I ate were white toast, hard boiled eggs, plain grilled chicken and soup broth. Every once in a while I indulged on lemon Italian ices. I was on prednisone, Asacol, and Vanco for C.Diff. It took some time but with an extremely low-residue diet and high dose medications, I was feeling better by the end of September. I was responding to the medications effectively and fairly quickly, making both my doctor and I very happy.

My mom had begun researching my illness as soon as we received the life-changing news. She found out about the Crohn’s and Colitis Foundation right away and discovered that they did walks every few months all around the country. A TakeSteps walk was going to be held that October in Prospect Park, Brooklyn, only a few blocks away from my aunt’s house. We registered right away and made t-shirts for my entire family and closest friends.

I was super excited when the day of the walk arrived. My best friends and I drove in to Brooklyn to meet up with my family. We were a huge group (about 25 people) and I felt very loved and supported. However, when we began to actually walk over to the park my nerves started kicking in. I was the center of attention and it felt weird. I’m fairly shy when it comes to being in the spotlight and it was a new feeling for me to deal with. Who wants a spotlight shining on them for being the sick one of the group? I tried to push all the bad energy out of my system but failed. When we arrived at the check-in table I was ready to freak out. My excitement had vanished entirely. I could not wait to go home. I wanted to escape the event before it had even begun.

Other families were swirling about all around mine. Some groups wore TakeSteps t-shirts while others had personalized ones like mine. The foundation provided banners on which families could write messages for their loved one and then walk/take photos with them. When my family made a banner for me a lump rose in my throat and I wanted to vomit. I felt like I couldn’t breathe.

I had initially responded so well to my medication that I guess I thought all people with ulcerative colitis had the same story as me. I thought that us “sick” people were all easily managed and that reaching remission wasn’t really that hard. I was so naive and so wrong. I failed to realize how serious my disease was and how LUCKY I had been that I responded to my meds right away, without months of trial and error. I heard others around me talking about infusions, radiation, surgery. I heard people talking about their horrible reactions to treatments, their months/years spent trying to achieve remission. I never thought about how bad my disease could get and how much I could lose. Some people can no longer work or attend school because of these debilitating diseases. The walk popped the bubble I had been living in.

For the first time in the three months since I had been diagnosed it really, truly, finally hit me: I was chronically ill with severe autoimmune ulcerative colitis. For the first time since receiving my diagnosis I realized how serious this was, how uncertain my future would always be, and how no amount of ignorance could ever make this go away.

I made it through the walk trying my best to not cry hysterically in front of all the people who came to support me and show their love for me. I felt like that would make me a coward in their eyes and believed I had to act like everything was fine. Typical, I guess, of an IBD warrior – we never tell people how we really feel on the inside, especially physically, because we know more often than not it is too painful for healthy ears to hear.

After the walk everyone went back to my aunts house where she’d catered lunch. As I smiled around at the faces beside me I was holding back tears. The lump in my throat had only gotten bigger with the passing time. I didn’t want to eat. I wanted to be in my basement, on the couch, curled up in a ball. The car ride home, only about 35 minutes, felt like days. What had been sadness earlier that morning turned into rage and I wanted to scream at everyone and everything.

My bad mood only escalated due to the prednisone I was on. Forget grumpy –  I was being  total bitch. I complained to my mom that the walk was horrible. I told her I would never again in my life go to another one. I told her I wanted nothing to do with the Crohn’s and Colitis Foundation. I told her it was dumb and stupid and made me feel horrible. She was patient and understanding, telling me I never had to do anything that didn’t make me happy. Her patience and understanding only aggravated me more. I felt like everyone had looked at me with pity in their eyes all day and I hated that. I didn’t want anyone’s pity.

Up until last month I never thought about the CCFA. Even after the anger from my first walk subsided, I never felt any interest to participate in another event. However, a few weeks ago I found myself reading stories of other IBD warriors who advocate, fundraise, etc on my laptop. I saw photos from a walk for Crohn’s and colitis in London. Everyone in the photos looked happy and proud and free. Within moments I found myself on the CCFA website searching events near me. I texted my mom telling her I wanted to do another run/walk before I’d even really told myself. I expected her to respond hesitantly by asking me if I was sure, if I’d really thought about it, or something else of that nature. Her response was the opposite and exactly what I’d needed. She told me she was so proud of me for wanting to participate in another event and would be right there by my side. My mom knew how huge it was for me to mention another event and to actually be genuinely excited by it.

Looking back on the day of my first walk, almost four years later, I realize what the issue had been. I rushed into the walk, into a CCFA event, without accepting my disease or coming to terms with my diagnosis in the slightest. I didn’t want anything to do with ulcerative colitis, but had gone to a walk in support of it! My mind had not yet adjusted to being sick. My body was diseased, but my brain still told me I was normal and healthy.  My old life and my new life had not yet meshed and participating in the walk that day allowed two invisible forces to pull me in two very different directions. I was torn between what I wanted and what I had. I had to let go of my dream life and come to terms with the cards I’d been dealt.

This illness has matured me in many ways. I could be disappointed in myself for how I’d acted and felt after my first walk, but it taught me a very valuable lesson: do things at your own speed, in your own time, and only when YOU are ready – never rush into something unless you know it will benefit you. Everyone walks their own path in life, some with a larger stride than others. 

This August my family, friends, and I will be participating in the Guts and Glory 5k in Ocean City, NJ. I am so thankful for the opportunity to participate in this event. I’m looking forward to this walk a million times more than I looked forward to the first one because I am now in a very different place.

I am looking forward to this walk the way I look forward to taking my pills and getting my infusions – with a hopeful heart, knowing they will make me better. I feel that this event will be a dose of medicine for my soul that I desperately need. I cannot wait to see other IBD warriors, say hello to them, and take in all the little moments in which a sense of understanding is passed among people, magically and quietly.

I will be stronger, braver, and more confident the second time around. I will not be embarrassed of my disease the second time around. I will be proud of who I am and the hell I’ve gone through to get to this point.

August 20th, you can’t come soon enough!

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