Fear lurks around every corner and sits on the surface of my skin;
It soaks into my body and it eats me from within.
As I degenerate and the pain spreads to a new part of my face,
I realize my only option is to sit down and embrace.
Embracing pain is something that I should not have to do,
But what other options are there when they have no cure for you.
– Mackenzie Lea
I have the tendency to push myself too hard when I go out and do things. I’ve always blamed this on my “Type A Personality.” I’m not one to procrastinate or stop when a task gets uncomfortable – I stick on a task until my perfectionist brain feels satisfied, even if it’s at the expense of my physical and/or mental health. Even though this is something I’ve done throughout my entire life, I noticed that it got worse after I was diagnosed with a degenerative disease. It’s taken me a long time to come to this revelation, but I believe I push myself too hard out of fear.
Fear is something I’ve become accustomed to ever since I was diagnosed with Trigeminal Neuralgia. When you google Trigeminal Neuralgia, you’ll see things like, “it doesn’t have a cure,” or “one out of three people with TN will commit suicide,” or “it’s the worst pain known to mankind.” I always thought that getting a diagnosis would be the beginning to the end, but it just left me with more fear. I think my fear stems from degeneration. Am I going to experience fewer and fewer fun moments as time goes on? Am I going to have to keep leaving things earlier and earlier? At what point do I stop having the ability to go out and do fun things at all? I already know it’s an extremely limited ability. I’ve watched my body deteriorate every year. Hospital visits become more frequent, I build up tolerances to my medications, and pain spreads to a new part of my face every time I swear I’m doing better.
I’ll post a picture of myself doing a fun activity and I’m bombarded with people saying “wow, you look like you’re doing so much better” or “you’re not very sick if you can go out and do that.” But what no one sees is the preparation before I go out and the suffering afterwards. Spontaneity is no longer a part of my life. I need to rest for at least 2 days before I can go out and do anything, and even after rest, there’s no guarantee that I’ll be able to go out. After going out and doing something, I usually end up in the hospital and I’m out of service for the next week. How am I supposed to be a reliable person if I don’t have a reliable body? My friends and family deserve a reliable person and I can’t give that to them because I don’t know if I’ll even be able to eat or talk on any given day. Imagine planning something for months and then realizing you can’t do it. I’ve gotten so much better at bouncing back after disappointment, but that doesn’t mean the fall hurts any less. I’m torn between still having hope and not getting my hopes up. It’s hard to want something and crave a normal life, but realize that it probably won’t happen and if it does happen, it’s not going to be in a simple or ordinary way.
When I think about the word “disability,” my brain tries to tell me that it’s the “inability” to do specific tasks. While that may be true in certain circumstances, I think that when you live with a disability, it actually means that you just have to find an alternative way of doing things. Often, that entails having to go the extra mile to do a simple task. Like I said before, there’s no spontaneity. Everything I do is carefully planned and thought out, so as to try and avoid creating a flare. Coming back to the concept of “fear,” having to plan your every move can manifest a lot of anxiety. For example, if there’s an outdoor activity and I don’t account for the wind, I’m likely going to end up in the hospital. If I go to the gym and decide that I want to do 5 extra minutes of cardio, I’m likely going to end up in the hospital. If I’m brushing my teeth and my hand slips, the toothbrush is going to set off pain and I’m likely going to end up in the hospital. Every move I make needs to be calculated, and unfortunately, life doesn’t work that way! So instead of constantly subjecting myself to a state of fear, I often just avoid tasks in general. I’ve come to a point where I associate doing things with pain and that’s not a healthy way to live.
It’s in my nature to please people and put on a positive face to make others feel more comfortable, even if I’m in extreme discomfort. Chronic illness is something that’s extremely overwhelming for the person suffering and their friends and family alike. Knowing that everyone has their own hardships to deal with, I struggle with finding a balance and I’m so scared of overwhelming other people with my disease. I desperately want to raise awareness and show the reality of living with Trigeminal Neuralgia, but I’m still not entirely sure how to do so. I try to share my reality on Instagram and Facebook, but I’m worried that it will come off as whiny and attention-seeking, especially when so many negative events happen back-to-back. I’ve been in the hospital so much lately and I know people will eventually get tired of hearing about it – I know I’m tired of having to go! And as you may have noticed, I haven’t uploaded any blog posts in a while. I’ve been having a hard time writing lately. I’ve spent so many days sitting at the computer for hours and hours and only producing meaningless paragraphs. All of my energy has been going into healing my broken body after being wiped out by simple tasks. That perfectionist, stubborn part of me is trying to keep up with my normal activities, but my body isn’t capable of completing them and that’s really taking a toll on my mental health. I know that as I deteriorate, I’m going to fully lose the ability to do these activities. It’s terrifying to watch that process happening. Whether it’ll be in a couple months, years, or a decade – without a cure, I’m going to lose my quality of life.
As much as I want to turn this into a positive post, some things just plain suck! I’m sorry that this isn’t my usual type of content, but I want to be as honest and transparent as possible. I really just want to thank everyone that’s reading this and everyone that’s been on this journey with me. My current good quality of life is a direct result of the care and love you give me every day. I am so grateful for you. As much as I fear the future, I know that I’m in good hands and that I have so many great things to look forward to.
Love, Mackenzie ❤
Featured Photo: https://foreverasleep.files.wordpress.com/2013/02/fear.jpg