It was a muggy August day when I met Dr. X. Apparently called the “Grandfather of CP,” Dr. X was tall, narrow and wore thin rimmed glasses.
Uncharacteristically, I was apprehensive and nervous for and at the visit, being so accustomed to the surgeon I’ve been following my whole life. But, since he’s leaving, I thought it was time to get a second opinion. That, and my mom has been bugging me about it for weeks.
As I sat in the crowded, colorful waiting room I frequented as a child, questions swam about in my mind. What was Dr. X going to say? Would he laugh at me? Did I secretly or openly, hold certain hopes? Of course I did, I told myself. I’ve been wanting to get off crutches for years, and I thought (perhaps foolishly) that my last surgery in 2011 was going to accomplish that goal for me. As the days went by, walking without crutches seemed more and more unattainable. It weighed heavily on my mind, and on my heart.
I was seen by a resident before Dr. X. The Resident was tall, awkward and fumbling.
“Are you looking into surgery?” he asked.
“No,” I answered, perhaps too simply. “I just want a second opinion. I want to see what my options are.”
“….Oh,” The Resident said, wearing an expression I couldn’t place. “…OK, then.”
After an short pause, Dr. X finally came through the door. Using a cane. We shook hands and he sat across from me.
“So, how can I help you today?”
I regurgitated my answers from my time with The Resident.
“And…you’re not seeing your surgeon because….?”
My surgeon, Dr. F, is a pediatric orthopedic surgeon. He is truly the best of the best. I idolized him in every sense of the word, and so moving on without him was already proving to be difficult.
To begin, Dr. X’s manner was so different from that of Dr. F, his stare was hard and cold and his questions short and curt.
“Are you telling me you put me in the middle between you and your mother, is that what you’re telling me?”
“…No,” I said, stammering. A slew of curse words filled the inside of my forehead but I held them behind my mouth. “I just want to see if you think I can get off crutches…what you think…what you think I can do. Honestly, I think it has a lot to do with my confidence.”
“Well I can’t help you with that,” Dr. X said, sloping over on the small exam table. “Let’s walk.” Dr. X ushered me to stand with a regal wave of his hand. “Now. Gently, gently,” he began, his voice withered with age, “Take your crutches and walk in the hallway for me.”
Even though I’m used to the whole rigmarole of walking up and down the hallway for doctors, physical therapists, nurses… I was still humiliated when Dr. X kept telling me:
“Keep your butt in.” (Loudly).
“Stand up straight.” (Even louder).
“Come on, let’s go!” (Softly, but firmly).
I was too embarrassed (though I should’ve been used to being watched like a science experiment) to inform Dr. X and all the rest of the residents that the reason why I looked so stiff (besides actually being stiff) was because
a) it was freezing in the clinic, and my muscles are even more stiff and spastic when it’s cold
and
b) Dr. X wanted me to walk barefoot. I understand since I’m a new patient he really needs to observe my gait, but my crutches are fit for me to walk with sneakers on. I’m not used to walking barefoot with the crutches, so as a result I’m completely unsure and unsteady on my feet.
Even though Dr. X had terrible bedside manner, he still gave me valuable insight. For example, in regards to using the crutches, he told me I was “tripoding” which means I was leaning too far forward and using the crutches for stability, not for balance.
When I nearly fell to the shiny floor, Dr. X said, “I wasn’t going to catch you.” I wanted to run away but my feet were planted firmly in place. It wasn’t until we were back in the exam room, away from prying eyes, did Dr. X begin to finally show some compassion. “Let me just say. This is hard. I can’t promise you that you’ll walk without the crutches.”
The sentence fell on me like an anvil even though I’ve heard it plenty before.
“It all depends on how determined you are,” Dr. X continued, and something changed in his eyes. “Are you a determined kid?”
“…Well. I made it this far.”
Cerebral palsy has a way of lurking in the shadows sometimes, striking at the most unexpected moments even when it feels like I have everything under control. After the appointment, near tears, I spoke to a dear friend of mine, who told me this:
There’s nothing wrong with you, and if you never get rid of those crutches, that’s OK. Just strive to be the best you can be, and know that you are enough.
The Spastic Diplege 