You know when you meet someone for the first time and right away you know you’ll be great friends? Well, that’s what happened with Noah. She holds such wisdom and wit and her perspective is infectious. She’s genuine and warm and so incredibly kind.
When I read Noah’s first draft, I was moved. Oddly, I was watching reruns of the TV show “House” at the time, when coincidentally she would decide to talk about lies. I couldn’t help but think that an appropriate title for it would be “Everybody lies” —as coined by Dr. House himself in the show when trying to crack one medical enigma after the next. If only life were really like the way it is in House. It definitely gave me a false understanding of what the road to diagnosis is like for people with rare diseases.
I’m honored that Noah put in the energy to write a blog for Chronically Surviving. It is uncanny the way she was able to write a stunning piece about a touchy but important topic that I’m sure many can relate to, even those who are “able-bodied.” So without further ado, I’m excited to share Noah’s blog below, but first, a bit more about Noah…
This is Noah, 23, of Lusby, Maryland. She is a poet and writer and has been an NIH study participant since she was two years old when she was diagnosed with a rare metabolic disorder called abetalipoproteinemia (ABL). Noah also has been part of the NIH’s Undiagnosed Diseases Program for several years, since many of the symptoms that make daily life difficult for her cannot be explained by her ABL diagnosis. She also has POTS and CFS.
Noah wrote a blog for NIH’s Intramural program. She also has one of her poems published in The Children’s Inn Book of Hope. She credits William Shakespeare for instilling a love of literature in her. When she’s not reading world literature, she’s writing plays and short stories as well as poetry. She is in the middle of getting her first poetry book published. She received a Rare Impact award from NORD (National Organization for Rare Diseases) in 2016. She was also a speaker at Rare Disease Day at NIH in February 2020.
Read Noah’s blog post below ↴
"The man who lies to himself and listens to his own lie comes to such a point that he cannot distinguish the truth within him, or around him, and so loses all respect for himself and others. And having no respect, he ceases to love."
—The Brothers Karamazov by Fyodor Dostoyevsky.
My friend Marcelle asked me to write a blog for her website; I was more than honored to do this for her. I immediately started to think about what I wanted others to know about what it is like dealing with rare diseases. I wanted people to see the truth about what we go through. I could sit here and tell you in grave detail how it is like to deal physically with our symptoms, but I much rather talk about our emotional journey.
We all go through times in our lives when we lie to ourselves to avoid the pain we may feel if we face the truth, but what is that like for those of us who suffer from chronic illness? I can't talk for everyone, but maybe you can relate. The five stages of grief apply well to what it is like living with a chronic illness. Denial. Anger. Bargaining. Depression. Acceptance.
As I have gotten older, I have realized that I have been in denial about how I feel about living with this chronic illness. I wake up every day in the stage of unassurance. Feeling the pain that goes through my body, I keep telling myself the same lies, hoping that it will make the symptoms magically disappear. I have realized that I have been lying in many ways. Every time I say that I am fine, that’s a lie. I am not fine, and I have not been fine for a long time. Why do I do this? What was I thinking that these lies were going to do for me?
The hurtful thing about lies is that it is the cruelest of imaginations; it is deceitful. It is like the worst partner you could ever date, but you tell yourself that they do this because they love you. You tell yourself that your lies are protecting you, while in reality, they are just destroying your soul silently and without remorse.
Some of the questions I’ve since been asking myself are: how do I continue on loving my life? How can I love a life in which I walk with the same pain and agony as the days before and that will inevitably continue in the days to come? How can I fill my life with the joy I deserve? Synchronously, I am currently reading The Brothers Karamazov by Fyodor Dostoyevsky, and while reading it, I found a line that has helped give me an answer: "Love life more than the meaning of it."
What does this mean to me? It means to live life in a way that is meaningful, not what society makes you feel you ought to be. We need to love the life that makes it ours. The good and bad parts are what make it ours; they are what makes us unique and that is worthy enough. Dealing with a chronic illness doesn't give us much room for loving ourselves.
We question because we have been told that life should be a certain way, and if we don't fit that mold, we are made to feel like we are living life in the wrong way. Wrong seems to be one of the words we repeat to ourselves. Doctors tell us that they are not sure what is wrong with us, and because of that phrase, it leaves an imprint on our hearts and spirit. We start to believe that everything that makes us who we are is wrong.
We are more than the lies that we tell ourselves and others. We are the truth that we keep hidden from the world. We cannot let our illness take away who we are at the core of our being. We have so much to give and achieve and receive. We are not the outsiders; we are not wrong; we are not broken.
We are the warriors that fight without a shield; we shake the ground we walk on because we are here. And we deserve a place in this world to live out our truth and not have to lie to ourselves or others to partake. We all deserve this magical life we have been given, regardless of our differences. Everybody lies, to others and to ourselves, but we can choose not to, and instead let the truth tell us who we are.
"You're braver than you believe, stronger than you seem, and smarter than you think" –Christopher Robin.
And never forget it.
