Monday, April 11, 2016

I Wouldn't Change It

You know, people ask me all the time if I could change my Neurofibromatosis diagnosis, would I? Up until a few years ago, I would have definitely said yes. I would have done almost anything to rid myself of this condition. I would have gone to almost any length to rid myself of these tumors, and the chronic pain I subsequently live with. I wanted to change my past. Deny the fact that I struggled with mental illness for five years. All I wanted, was to change me.

Now. I look back at all the thing I wanted to change and ask myself "Why". Why would I want to change those things? Why would I change something that makes me who I am. Changing my past, my condition, and my story means I am changing who I am at my very core. Sure, there are days where I curse my Neurofibromatosis. There are days I am in enough pain that I would do almost anything to make it stop. But I wouldn't change it.

For the longest time, I sought control. I knew that this condition rendered me helpless on so many levels. New tumors show up all the time, new aches and pains grace me with their presence now and then. Weird symptoms pop up out of the blue, most often at extremely inconvenient times in my life... But I've learned to adapt, I am coping. Changing my condition would mean I am changing who I am at my very core. My NF is etched into me as much as my eye colour is.

My NF has taught me significant life lessons, some of which I don't think I would have learned at this point in my life if I didn't have this condition. I've learned that life isn't fair, but we are never given more than we can handle. I've learned that facing adversity only makes you stronger. I've learned that I am worthy of love and belonging. I have learned about the concepts of grace, humility, and compassion. I have learned that courage is a great concept, but it requires us to rid ourselves of the fears of other peoples judgment.

When people hear my story, I am often met with this look. Some people get really quiet, others ask a lot of questions. But in all reality, my story really isn't all that different than yours. We all have faced tragedy and loss. We have all faced uncertainty. We have all had moments of insecurity in life. We. Are. Human.

Sure, I have a brain tumor. To some people that sounds scary, but to me that's just part of life. Glen (my brain tumor) graced me with his presence when I was 13, and I have had a lot of time to cope with the fact that I have something growing in my brain. I can't change that, but I can accept that.

I have said this before, and I am going to say it again.... I do not have to live my life as a diagnosis. I am not my NF, and I never have to be. I am going to live a successful live despite my diagnosis, and I challenge each and every one of you to live YOUR lives to the fullest, no matter what your past may hold. I will always have NF, but learning to accept me is a whole lot easier than denying the unchangeable.



  1. Well, this post brought tears to my eyes. You have to be very courageous to accept and cope with NF. Yes, challenges make us go through life and learn how to stay on top.

  2. Well said, I feel the same way as you, I choose to not let this define me and be the person who goes on with life and be positive. I choose to be a great advocate for my son and believe that if I wanted people to know the book of NOLA or the book of my son Jackson, what would I want it to say.....I have been blessed with a very very good life and yes even though my son and I have NF, I choose to believe we have it for a reason, yes there will be struggles in life but we are way more blessed than many many others in this world. I choose to believe the glass is half full and thank God for all the many wonderful things he has given me!!