“I’ll admit that some of it has to do with desensitization. Back then it was my first experience with those things and therefore a lot scarier. Now having a PICC line inserted, having an NG tube, getting a blood transfusion, having surgery, etc. isn’t a big deal because I’ve been there, done that. It’s just something that is part of my life now but I don’t let it consume me.”
“Because of all of my struggles I am thankful for my disease. As silly as it sounds it made me into a better person. Having the best job, being perfect, doing all sorts of “amazing” things is no longer my priority. I am able to take a step back and appreciate the things that actually matter in life. When I see people around me stressing over trivial things I laugh to myself because it’s like I know a little secret. I know that those things don’t matter and I feel lucky that I am able to LIVE life. Thinking back it’s hard for me to remember the girl I used to be and it all feels like it was a dream. My days are so much brighter and I live life so much better. I hope that if you’re not at this point already that one day you get here, it’s a good place to be.”
I walked down those familiar corridors today. I walked through Good Hope, past A&E, past Ward 18 and through X Ray and Radiography to the Treatment Centre for my appointment. Why? I wanted to know if I could.
I walked up those familiar stairs with a bounce in my step. I had my coffee in one hand, my Blackberry in the other. It was all so very familiar to me; but putting one foot in front of the other, I was reminded of all the appointment I had made many months ago when I needed my dad to hold on, just to get on the first step. It took ages back then, to reach the top; out of breathe and weak as anything. Today? I bounded up those steps. Sat in the waiting room, everything so normal and comforting to me. Weigh in. The consultant’s room. The chairs, the desk, the people. It was a sort of a home from home.
In many ways, I am thankful for these reminders. That everything is back to my sort of normal again. It scares me, though, how easily it comes flooding back; and within a instant I am that sick little girl again, just fighting to smile. I have smiles by the bucket load these days. I have sarcasm and laughter and every other piece of defense mechanism at my disposal. And I use them! They are no longer hidden.
But I am in a way desensitised to it all. It is just so ordinary. Blood tests. Injections. Talks of scans and results. NG tube. Isolation. Ultrasound. Ward rounds… everything I couldn’t do before I actually did it, I could all over again without batting an eyelid.
I have to realise that some people go their entire life without knowing about what I or anyone else with a chronic illness goes through. They have no idea. They worry about what to wear, or how to put their make up on, or how to impress someone, or how to be the very best, the most perfect person they can be. I have no time for that. I am forced – or was forced to wake up – to realise that those things have no effect on me anymore. I can not be perfect all the time. Hell, I can’t be perfect regardless of what life throws at me! What life now throws me are good and bad days. I have more good days than bad at the moment and I love that. That there is ‘normal’ Lou again. That I see my life through my disease’s eyes and having a shit day isn’t the end of the fucking world. Hell, it isn’t even a blip on my radar. A bad day to me could be the worst thing imaginable but you know what? I can get through it. Whatever it is, I will get through it. You know why? Because I know how to LIVE MY LIFE.