Hope is essential in order to live joyfully. Some philosophers believe that hope is a barrier to living a full and joyful life. They argue that waiting expectantly for something that may never happen can be disappointing and take away from the possibility of joy and happiness in your life. For example, Friedrich Nietzsche said that, "Hope in reality is the worst of all evils because it prolongs the torments of man." He believed that if our hope could never be fulfilled, it would only make difficult things harder. However, I disagree. I believe that hope can be a source of joy in our lives. Aristotle said that "Hope is a waking dream" and believed that hope was a good thing. Having hope in your life gives us something to look forward to and a reason to keep going. If you have no hope in your life it can be very easy for depression to take hold. When there is no exciting future to look ahead to, your focus becomes constantly on the here and now, and with the repetitive monotony of everyday life, that can easily become a boring and depressing thing to focus on. But if we have hope, we can switch our focus to an exciting future.
Yes, hope may not live fully up to our expectations, but it does help us to get through the here and now when it is difficult. As believers, we have hope in a future spent with God. This hope is even more powerful than the mere hope that "better days are coming." We believe that when this life is over we will be able to spend the rest of eternity with God our creator. Philosopher and Theologian C.S. Lewis said "“Hope is one of the Theological virtues. This means that a continual looking forward to the eternal world is not...a form of escapism or wishful thinking, but one of the things a Christian is meant to do." When we have hope in a future so glorious, we can live joyfully no matter how difficult our current situation. We know that the difficult times will not last forever, because we have a better future awaiting us. This incredible hope helps us to persevere through hardships with joy.
Final Essay
“I’m exhausted and I just want to go home,” I told my mom as we sat in the doctor’s office for my fifth and final blood test of the day. I was feeling tired and light-headed from all the blood that had been drawn and I was ready for this awful day spent in and out of the doctor’s office to finally be over. “I know you’re tired Moriah, but just think of how incredible it will be to spend hours in the sun if the medicine actually works!”
I was diagnosed with Erythropoietic Protoporphyria (EPP) when I was nine years old, but it is a condition I’ve struggled with since I was two. EPP is a rare genetic disorder affecting 1 in 75,000 to 1 in 200,000 people. In short, I have a mutated gene that causes excess levels of protoporphyrins in my skin, which basically means I experience extreme pain when exposed to sunlight. After just ten minutes in direct sunlight, I begin to feel a tingling sensation in my hands or face. If I don’t get out of the sun, symptoms will progress and my skin will feel like it’s on fire. There’s not much that can be done for the pain, but I will often sit with fans blowing, AC blasting, and cold, icy cloths wrapped around my hands, feet, or wherever else I’m reacting.
Because of how rare EPP is, after many years of many different doctors I still wasn't’ diagnosed. It wasn’t until my mum went to the doctor after discovering EPP herself and asking them to specifically test for it that I discovered I had EPP. Because of the difficulty I had in receiving a diagnosis, advocacy and awareness for rare diseases is something very close to my heart. When I was in 4th grade I worked with my mum to create a slideshow presentation about EPP which I shared with my class at school during Porphyria Awareness Week. I have posted on Instagram sharing my rare disease story, and I am an advocate for the rare disease community. However, it is still difficult for me to talk about EPP with anyone but my closest friends. I only feel comfortable sharing my rare disease story with my true friends of “mutual kindness” as Aristotle called it. These friends actually care about me and respect me and see me as more than just my disease. Also, in sharing such an important part of my life with them, I invite them to be vulnerable with me. However, sometimes I have told people about my condition who are more “pleasure friends”. These people don’t really care about me, and they are the people who respond to my story by not believing me, or telling they “know” what it’s like. Because of my experience with these false friends it makes me want to hide my condition, but I’m continuing to push past the emotional pain of living with a rare invisible illness and continue to advocate for porphyria and rare diseases in general.
I’m currently participating in a study where I’m receiving a placebo, and I’m hoping that I will be able to start taking the real medication soon, and get to spend hours in the sun. Although this may never happen, I am still choosing to remain hopeful. I am not giving up hope like Nietzsche, who said that hope was the worst evil of all. Instead, I am clinging to the hope of a successful drug. I am not letting the possibility of the medication not working bring me down, or stop me from focusing on the opportunity the trial has given me to make a real difference in my own life and the lives of everyone who battles with EPP worldwide.
Throughout my life I have struggled to participate in normal activities because I can’t be in direct sunlight for more than 30-45 minutes. However, I have tried to not let my condition hinder my life. Whether that means showing up to summer camp wearing long sleeves, gloves, and a giant sun hat or running between shady spots on a hike, I try to go on every adventure I can. Between the pain, isolation, and lack of understanding, growing up with a rare disease has been far from easy. However, EPP has taught me compassion, perseverance, and strength, and has instilled in me a passion for advocacy of rare diseases.