|<< previous article||next article >>|
by Aileen M.
It’s a fact of life. We can’t escape it. We all experience pain whether its physical or emotional, we all deal with pain. It’s inevitable. At some point we will feel pain, we can’t escape it. But pain always goes away, we heal, we learn to move forward.
But what if pain is all you’ve ever known? What if it’s so bad that it never really goes away? It’s always there behind every smile, every laugh, every joke, every tear.
I have lived in pain for almost twenty years since I was 4 years old. My knees started hurting and never stopper. The worst headache of my life started in October of my sophomore year of high school and wouldn’t release its vise grip on my brain till my sophomore year of college.
Twenty years I have lived in pain; ten of those I’ve spent in excruciating pain. Pain that causes you to physically jump when it shoots through your body. Pain that feels like someone has taken a fire drenched knife and plunged it through your skull several times causing you, for a few moments, to no longer remember where you are, what you were doing, and, at times, who you are.
Pain can break a person.
It has nearly broken me in the last couple of years, but it did break me in my public school years. The pain was so bad that it forced me to quit everything I loved to do and drove me into a deep, suicidal depression. One that would haunt me for years. I hid my pain from the world because no one understood me, and worse, the doctors threatened to lock me up because they said my physical pain wasn’t real. When I fell into the wheelchair I began my very slow climb out of my deep depression and suicidal thoughts even though the pain had only increased.
The headaches had grown intolerable. They never ended, they only worsened. Blacking out in the middle of a conversation or school lesson and waking up in a different classroom. Pain shooting down my arms and spine. Pain traveling from my spine down both my legs leaving a trail of fire in its wake-day and night. But I had changed the way I saw life had changed. I realized the life I had wasted, I full of regrets, determination, and hate. Hate towards everything and everyone for my own pain, for not seeing it and not understanding it. But mostly hate at myself for bitterness I felt towards my own body and God. But no amount of hate and bitterness makes the pain go away.
But this physical pain has never gone away. Not even after the major brain and neurosurgery for the headaches. The headaches only came back 6 months later just to upthrow my world.
Even as I laid on my death bed, the pain never left my body. It stayed with me every second of every day, however, that bitterness and hate did leave me. For the first time, I felt the depression recede from the corners of my mind, and I finally came to terms with my pain. With my life. With my EDS and Chiari. Maybe it was all the time I had to reflect or the realization that even in death I cannot escape my pain. Or, perhaps, it was the daily struggle to survive and fight that led me to finally accept that this was what my life was always going to be like, pain and all.
Pain is my life. Wheelchairs are my life. Badass canes are my life. Fighting every day to live is my life. And I’m okay with that. Am I okay living in pain, no. But I’ve had an amazing life. I’ve met so many amazing people and I’ve experienced things that have helped me help others through their struggles. Yes, I dislike my pain, but I love my life. I am who I am today because of the pain that EDS and Chiari put me through.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
Do you have a story to tell? Share it with us!
Categorized in: Stories