Thinking back: I am just shy of 18-years-old. My mom and I have exhausted the ER staff of all of our local hospitals if not every day, every other day, for the past two years. My hip and my back now ache with the same pull-and-stretch feeling I described at 16, but now they both burn intensely.
I sit in the waiting room of a colleague of my specialist because for the past year she’s been too booked to see me despite the emergency situation I am in. I shift my weight uncomfortably in the chair trying to ease the burning sensation in my hip. I lean back and forth to try to take some of the pressure off my back. It feels like I’m waiting a lifetime to be seen. Standing and walking is uncomfortable, but it gives me some relief in a way.
Now I am unable to sit in my classes at school, so I study at home. I can’t shower on my own anymore because I can’t stand long enough, let alone actually do the activities involved in the shower because of all my energy is devoted to staying upright. I can no longer walk without putting over half of my weight onto something. My mother calls it “cruising,” as a toddler would do, because I no longer have a walker at home.
The walls or anything or anyone sturdy around me have become my greatest ally in getting through my days. Dressing myself has become a painstaking, sweat-inducing task of 30+ minutes. Everything feels impossible and painful. I feel empty and numb.
When I’m called back to see the doctor, a sense of dread washes over me. The Botox treatments we’ve been trying have not worked for more than a week. I’m not sure what my options are, or if I even have more options. So, as the nurse leads mother and me down the hallway, I debate telling the doctor the truth. But as I lean hard against the wall to take my next step, I know my pain is obvious and there is really no point of trying to conceal it, especially if I want help, which I desperately do.
The nurse and I exchange the regular rundown of my health as she takes my vitals and then I’m left to wait for the doctor. She steps into the room with a smile on her face, but her eyes show me dread and fear and I know that it’s for me. I hold my stomach while it twists and I tell her that the treatment hasn’t been working in a meaningful way as we had hoped. I ask for more options.
My mother and the doctor talk for what feels like a half hour, I know I was a part of the conversation, but I can’t remember what was said. All I can remember were her last words: “Brittney, there is nothing more I can do for you. It looks like you will have this pain for the rest of your life.”
My world crashed around me while simultaneously becoming stable and validating. Someone confirmed my pain was real. Even if they didn’t know how to treat me, I at least had scraps of information to hand to a doctor who can.
But what an earth-shattering feeling it is to be told, before you are legally an adult, that you will live with pain for the rest of your life.
Who will help me?
Note: Cerebral Palsy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cerebral Palsy News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cerebral palsy.
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