Puzzle Peace
Quadriplegia is paralysis caused by illness or injury to a human that results in the partial or total loss of use of all their limbs and torso. My spine doctor read this diagnosis aloud from my chart. A picture I found difficult to piece together in my mind. Even if it is only partial.
Completing a puzzle is not easy without the box for reference. So many pieces scatter without an edge with which to frame the whole.
When you have undiagnosed CRPS, finding the right doctor is like drifting at sea, grasping for visions of life lines that are not there. You become so desperate to survive, that you cling to anything with air. Until it deflates and you find yourself treading the same murky waters as before.
Patients with CRPS are exhausted by the time we are diagnosed. When we have spent months or years trying to find the doctor that will tell us what we already know. That pain is real. The average CRPS patient sees five doctors before they receive a diagnosis. When they find the doctor that offers a line and pulls them in. Like mine.
I sat on the examining table. My father at my side. My friend Debbie watching with anticipation, writing notes on a paper towel as the doctor spoke to me. Like a person. My head hung in pause. Because I was so raw. Raw from other doctors who had poked so many holes in my raft. Who didn't know how to save me - from my self.
He held out his hand for me to hold - his palm toward the ceiling I had hit so many times before. I hesitated, my right arm weak from raising it so many times in prayer. So many nights of talking in my sleep to someone who wasn't there. Wanting answers no one seemed to have. Until now.
It's not their fault. Doctors are human. But we wish they were not. We wish they could heal with a wave of their hand. But all they can really do is try to piece together a puzzle without the box it came in with the picture on the front to guide them.
I have finally found a doctor with the box. He knows what the picture on the box should be.
I am so much better than I was even a week ago. The surgeries have lifted the pain level by seventy percent. Today I have a Psychologist appointment that will clear me for the UCLA program. I am tempted to tell her I have a crazy pain. Next is the UCLA neurologist to clear me of ALS. Simply a protocol as my symptoms mimic those of that disease. In six to eight weeks I will undergo Ketamine Infusions. This along with physical therapy and a tool chest of a multi-disciplinary approach just may reveal the picture on the box - is me.
I'm not sure what my puzzle will look like in the end. Only God knows that. But the edges are defined and the framework complete. Only time will guide each piece to its place. Guided by the hand that waited so patiently for mine. Facing the ceiling I no longer have to meet.
I looked down and placed my palm in his. With trust. And gratitude. For throwing me a life line - that brought me to a place where I can finally breathe - and showing me the box with a picture bringing with it a sense of peace.
Reader Comments (2)
Oh Mic, I'm so glad you found someone who can help! You are right, Dr's are human but that doesn't make it any less frustrating. You are so so brave!
I have learned that we are all so human. Darn it! ;0)