I remember waking up. I saw my parents, standing over me the first time I opened my eyes. The smell of cleanser and sickness was strong, and a lot of beeps, ticking, and hushed tones could be heard; I was in Recovery. My dad just blankly stared, and tears ran down my mother’s face. I half-smiled, and then blinked…. When I opened my eyes again, they were gone.
The second time I woke up, hours later, my parents were already home, but my fiancé was there. I felt something in my hand; it was his hand, holding mine so gently that it hurt more than if he had squeezed me with all his strength. I said nothing, nor did he. Could any words be spoken to take away the horror of the situation?
The first time I did speak, I know that I said, “why do I feel so bad?” A nurse was wiping the gunk off my lips that had accumulated during the many hours I had been unconscious. She looked at me, and said, “Honey, you just had intensive brain surgery. You aren’t supposed to feel good yet.” I closed my eyes, and again drifted into nothingness.
I know that at some point, someone wheeled me down for a CT scan. It couldn’t have been an MRI, because I didn’t hear the clunking of the great, expensive machines. But I was surprised at my own loss of strength; it took 4 people to move my body off of the wheelie onto the CT bed. I couldn’t have lifted even one finger to help them, and the loss of my abilities to control myself made my heart beat faster. I was entirely and utterly helpless.
There is a certain fear that takes over your brain and body when you realize you’ve gone through something that you aren’t aware of. Because, although I knew originally that I was there for a Microvascular Decompression of my Trigeminal Nerve, I don’t remember a second of the surgery. How could I? I was knocked unconscious. I went to sleep in a gown with giant underwear, one single needle inserted into my wrist that offered fluids, and when I woke I found I had a catheter, no underwear, part of my head was shaved, part of my skull was missing, and I had countless machines attached to me. Heart monitors, the sticky pads that cover your chest and leave residue that won’t wash off for weeks. Leg compressors, because the doctors know you won’t walk for awhile, and they need to keep your circulation going. Multiple IVs, delivering fluids, anti-inflammatory medications, and strong pain killers. Morphine, cycling through your veins. You wake up and feel a cold chill run through your blood stream, and it feels both foreign and welcome. Because that chill offers some relief of the lightning bolts going off behind your eye. If you are lucky enough to have what I have. If you are lucky enough to have something that is considered the worst disease known to man.
I don’t know what really happened during my surgery. They can explain, and a neurosurgeon shows you charts of what is supposed to be your brain (but seems too unreal) and you look up pictures on the internet. But from the time that I was laying on a gurney, my mother and aunts saying, “I love you, sweet dreams baby” until the time I entirely remember in the SICU, I don’t have much recollection of. Clips of moments, a few feelings here and there about the junk they inject into your body-- it just doesn’t seem like it could have happened.
Yet here I am, years later, with a 3-inch scar behind my right ear. I have had several MRIs, seen multiple doctors, asked countless questions since that day in October. It is all so real. It is all still a part of my life.
I have Trigeminal Neuralgia. I have the most painful disease known to science. I suffer daily with crippling, uncontrollable, relentless pain. And I’m still here, and I’m ready to share my story.
Very well said. I could se and feel everything you described. Thank you.