“I Remember It Like It Was Yesterday”

An ugly, green and orange hotel comforter; that’s not what I thought I’d remember about July 13th, 2013. Of course, that’s not the only thing I remember, but it’s the first thing I saw when I experienced “the worst pain known to mankind”.

And now here I am, exactly 5 years later, sitting in my own bed. I’ve been up for a couple hours now, but I haven’t worked up the energy to wash my hair or brush my teeth. I have to mentally prepare to do tasks like these because I know it’s going to hurt like hell. I know when I put the toothbrush to my teeth that I’m going to feel an electric shock sear through the nerve. I know if a drop of water touches my face while I’m washing my hair, it’s going to feel like I’m getting stabbed there.

It’s strange to think that it’s been 5 years; the memory of that comforter and that first pain feels so fresh. Yet, when I think about it, I’ve done a lot in the last 5 years. This post is really hard for me to write because my emotions are all over the place. Part of me thinks about how many horrible things I’ve endured – brain surgery, near-death experiences, allergic reactions, and suicidal ideations. Part of me thinks about all of the things I’ve lost and missed out on – school, jobs, volunteering, friendships, and the last few years of my childhood. Lastly, part of me thinks about all of the things I’ve gained and accomplished – the support from other sufferers, strengthened relationships, invaluable life lessons, perpetual gratefulness, and the bond I’ve made with my true-self.

This disease has taken everything from me and forced me to completely redesign my life. I spent 15 years becoming someone that, upon reflection, I didn’t really like. In the last 5 years, I’ve become someone that I’m proud of. I don’t believe in things happening for a reason, but I do believe in making the best out of the cards you’ve been dealt. Even though that first memory seems like it was yesterday, I can’t neglect to acknowledge all the things I’ve accomplished since then. I am so excited to see how far we can go in the next 10 years!

Now, we can only hope for a cure and a better quality of life for TN sufferers (and chronic illness sufferers alike), but I know I’m not waiting around for that day. Everyone has a unique voice and I think the world would be a better place if we listened to and learned from each other. It is my hope that I can offer some of my knowledge and perspective, while listening and learning from the rest of you.

Let’s make this a positive 5 year TN-versary and celebrate our accomplishments, our perseverance, and our resilience.
Love, Mackenzie



Dedicated To – My Support Network. Know that this is as much of a positive anniversary for you, as it is for me. I couldn’t do this without you guys!
Editor: Lindsay Fortin


  1. You are such an inspiration! You are strong , kind and all around one of the most amazing people I have been privileged to have met! You’re happiness beams when you are in a room and your compassion for everyone around you!
    You are just an amazing person! You are an amazing role model for everyone around you!


    1. This made me cry ❤️ You are such a caring, thoughtful person and I’m happy to have you in my life. Thank you for your continued support! Always here for you ❤️


  2. Mackenzie, you have an amazing outlook on life. I look forward to following your blog. Thanks for sharing your incredible gift of words 💙. N.


  3. Congrads warrior! I have been through the same but 9 years of TN. I believe that the only thing that keeps me going is staying positive keeping a sense of humor (even through brain surgery , bacterial meningitis , glycerol injection that damaged my eye permanently , losing relationships, my career the list goes on and on). Furthermore my faith keeps me motivated to turn my struggles into positives by looking at those with struggles much worse than mine such as cancer. I have now dedicated my life to focus on my health and to help others by creating a non- profit organization which will be officially up and running within a month or so.(working out logistics). The name is MUSLIMANITY1PROJECT. The goals are to build schools, small medical facilities, personal care and hygiene products for men and woman etc. Humanity and humility should go hand in hand. Nine years ago my focus would have been getting promoted to first grade sergeant and having kids. Now it’s to fight this battle with my fellow teal strugglers and to leave a lasting impression to those that I meet. Thank you for having the courage to share your story and keep smiling! God bless ( just a note my website is still being designed so hopefully everything shall be done soon so that I can focus on projects both locally in the States and around the world, I already have pledged of an estimated 150,000 in donations as soon as I get my tax id, the ball will be rolling for TN RESEARCH AS WELL!)


  4. I cried while reading this, it is like was me writing the journal. Love your bravery it is the best thing to do, your spirit is healthy even though your body is sick. I personally don’t let my spirit to get sick. Love


  5. Oh! I could have written this with a slight change : on June 4, i “celebrated” my 4th TNversay…
    Amazingly, although kneeling because of that horrible pain, we seem to grow in strength, in compassion, in sense of others, in always finding somewhere inside us the will to go on no matter what… and in Faith!
    Tender hugs TN sister! ♥️


  6. Every day you give your grand parents more reasons to be proud of you. Thank you for being the wonderful and caring person you are. I believe this blog is a major step on the road to awareness and eventually a cure. Let’s hope that the people suffering from TN draw some comfort from knowing there are others out there that know their pain and will share their coping methods.


  7. Your words warm my heart. I am so proud of the amazing woman you are becoming and the gifts that you are sharing. You have a way of capturing your beautiful spirit and keeping life very real. I look forward to seeing more of your writing.


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