“Hope is that thing inside us that insists, despite all the evidence to the contrary, that something better awaits us if we have the courage to reach for it and to work for it and to fight for it.”
Barack Obama
There have been times in my life when I’ve wanted to give up. The relentless physical pain, day in and day out, has at times felt like it would consume me. The emotional pain that has been a constant companion to the physical, has oftentimes felt like too much to hold.
For years my mom would tell me, “Things are going to get better. We’re going to figure this out.” But year after year something else would go wrong with my body and my faith in her words would lessen just a little more.
I would go to a new doctor, or start a new treatment with fresh hope in my heart that this would be it. That this doctor would be the one to finally figure out what was wrong and fix me once and for all. But with each failed treatment or each puzzled doctor, that bright beacon of hope would dim just a little more.
Years of waiting
Sixteen years is a long time to hold onto hope. For sixteen years I continued to wake up each morning with the same unyielding pain coursing through my body and I’d think to myself, here we go again. Another day of fatigue and discomfort to drag myself through. For sixteen years, I had no idea why I was in so much pain. Some days just peeling back the covers and putting my feet on the floor felt like a monumental task.
But I refused to let go of hope. There were years when I stopped going to doctors. No one could ever seem to figure out what was wrong with my body so what was the point? Even throughout those dark years, though, a tiny glimmer of hope remained in my heart.
I always held onto the hope that one day I would find a doctor that could finally get to the bottom of what was going on in my body. I continued to believe that someday a new treatment would be invented that would help me. I could not give up that hope. It sustained me through some of the darkest days of my life.
Prayers answered
And then one day in 2019 I finally found the doctors who would diagnose me with Ehlers-Danlos Syndrome and a cerebrospinal fluid leak. Having a diagnosis changed things. I no longer had that tiny voice of doubt in the back of my head that said “Maybe they’re right—maybe you are crazy and this is all psychological.” The silencing of that voice was huge.
Getting diagnosed with an incurable disease was bittersweet. I finally had answers and knew the root cause of all my pain. It was life-changing. But I had always hoped that we would figure out the cause and then it could be fixed. This diagnosis wasn’t something that could be fixed. Referrals to new doctors who could help me manage my symptoms and condition were the best anyone could offer.
But in 2022 my hope that a new treatment to help my constant headaches would be developed became a reality. I finally listened to Adam and went to a new neurologist who started me on a new kind of drug—a CGRP inhibitor that blocks the protein involved in the nerve pain and inflammation caused by migraines.
My headaches are not gone but they have been lessened by my CSF treatment and these medications. I finally have something I can take when my head begins to throb that actually works a good majority of the time. It feels like a life-saver some days. And my back pain has also lessened since my fusion revision surgery in 2021.
Hope for the future
I’m doing better than ever before. And I’m so excited to share that I’m writing a book about my health journey and all the lessons I’ve learned along the way. But without hope, I would have never gotten to this point in my life.
Our modern medical system is flawed, that’s for sure. But, even so, they are constantly discovering new things and developing new treatments for so many medical conditions. And that alone is reason to hold onto hope.
Hope—it is one of the single most important things we have to sustain us when life gets hard. I refused to give up hope that one day there would be a treatment to help me—despite all the evidence to the contrary. Despite years and years of failed treatments and heartless doctors and seemingly endless pain.
I refused to give up hope. And hope is what carried me through some of the hardest times of my life. Yes, I had to work hard and fight like hell to get to where I am now. But hope is the one thing that always anchored me when the storms raged and I felt like I was alone in a sea of pain.
If you’re hurting, if you’re in a season that feels dark and unfair, please don’t give up hope that something better awaits you. You may have to work for it and fight for it with everything you have, but whatever you do, don’t ever give up hope. Because hope is such a powerful thing. And if you let it, it will carry you through life’s storms.