Dear Crohn’s Disease,
I know that you know I’m an adrenaline junkie, that I like roller coasters or throwing myself out of planes (skydiving). But there is only one type of roller coaster I like. That is the type with tracks built on steel pillars, strapped into a cart that races fast, through loops and down big drops. Not the emotional and physical, up and down, in pain, type of roller coaster journey that you seem to take me on.
I’m a fiery, confrontational type of girl and damn do I wish I could tell you to move aside (I will keep my language polite). It cuts me deep to know that no matter what, you are there – like a devil playing havoc with me. You forced your way into my life at such a young age, I don’t really remember much of the time before you existed. Despite that, I’m writing this to let you know, the only person in control of my life is me. No matter what. I’m too stubborn to ever let that change. The tables are turning.
Diagnosed at age 11, very quickly parts of my childhood were left trackside. I felt that I had to grow up, mature quicker, become more self aware and independent. Only I could express how I felt, my pain levels, my struggles. Very quickly I had to learn to be clear about my illness. I had to race from 0-60 in no time at all just to keep up with you. Yet, I was still so confused as to why I seemed to live my life in the bathroom, staring at the bathroom floor as I doubled over in agony. I distinctly remember describing my pain as “feeling like the entirety of my insides had blistered, and one by one these blisters were popping” – which essentially is what was happening. To add to that I had weight loss, weakness of my bones, fatigue. Gosh, I really was a shell of myself. The world had carried on and I had been left dazed, just about processing what was happening.
You have ran the tracks with me, taken me in circles. In the beginning it really was the fear of the unknown that did it for me. I had no idea what having Crohn’s meant, I had never heard of you, I had never known anyone else suffer with it. Petrified is the only word that comes to mind. You thought you had beaten me. The truth is I think I thought this too. Doctors told me my life would be different, I was a bright child and I was told that you had taken my chance of a full education away. Why? I asked, to be told I was really poorly and my body wouldn’t cope as normal with school. With that, I had hit the lowest point on the track.
Nothing prepared me for the sheer amount of twist, turns, loops, ups and downs that I would experience. From new medication, to changes in medication, to the effects of steroids. I battled to get myself into a healthier place. Then along came my remission but with that you made your presence know. I fought a low immune system, picked up infection after infection. I know you know that you had control at this point.
I had always had a fighting spirit, a confidence in my ability and you forced me to take this to a new level. A fire burned and my stubbornness made an appearance. It was like one day I had told myself that I wasn’t going to let anything stop me from doing what I wanted to do. My mindset had shifted, I wasn’t wallowing in self pity, I had to take action. Nobody else was going to get me into remission, make me well, or for that matter complete my school work. It was all on me. This wasn’t an easy task, I often doubted myself but I just couldn’t ignore the fight inside.
Fast forward 14 years, I sit here reflecting. I’ve had my ups and downs, my flare ups, my fair share of the battle against Crohn’s. But I’ve also won at life – I completed school, got into university. I didn’t just graduate once, I did it twice as I completed a Masters degree last year. I’m in an amazing career where I get to travel and adventure a little, I am really building something for myself. Where do I see myself next? Top sales person, management, Managing Director, CEO! Why not? The world is my oyster, right?
I’m my own cheerleader, I’m the one with the goals, the dreams and I am the only one who is going to make them come true.
So, Crohn’s, I guess you are the one on a roller coaster ride now. You have to pull down the lap bar, get belted up and brace yourself. You are going to immerse yourself in the ups and downs of my personal and career development. Accelerating more and more, I’m not slowing down. This track is going to be relentless, loop after loop, we will be flying high and diving at a moments notice.
I might have you, but you don’t have me. I thank you for all you have taught me so far but now it’s time for me to move on with the next leg of this journey. Life isn’t reducing its pace and neither am I. I’ve made peace with you and I will see you at the finish line!
Scream if you want to go faster!
Skydive 2018, fundraising for CCUK.
Sitting in NYC, where I was inspired to reflect on my journey.