My Adventure in St. Louis: Part I

I’m not going to lie, as I flew to St. Louis with my loved ones by my side on February 11th, I was nervous, more nervous than I thought I was going to be. We arrived late that night, and consultations with the surgeon and his team took place the next day starting at noon.

My first apppointment was with the physical therapist who assisted in reviewing my application for SDR, where she answered any last minute questions we had about what to expect. I was somewhat put at ease, but still apprehensive about meeting the neurosurgeon for the very first time. I knew that he was going to ask me to walk independently for him, and I honestly had an irrational fear that he was going to reject my candidacy for the surgery if I was unable to walk without my crutches under his watchful eye. Lo and behold, shortly after he introduced himself to us, he asked me to walk across the room unassisted.

“Are you going to guard me at all?” I asked, my question more directed towards the physician assistant, who sat quietly in the corner of the room with a file folder in her lap. My question garnered no response, and that was my answer: I was on my own. I planted my hand on the corner of the sofa in which I was sitting, and willed with all my might to move and miraculously, begin walking through all that open space without someone next to me who could catch me if I fell. I was only able to walk two or three steps. I felt like such a failure and was definitey embarrassed. I halfheartedly reminded myself of what my friend told me before I flew to Missouri: if you could walk perfectly, you wouldn’t be there in the first place.

“That’s OK,” my neurosurgeon said. “Let’s see you walk with the crutches.” With relief, I took my crutches and practically zoomed across the room with 17 years of experience under my belt. “So, with crutches you are functional,” he said. He seemed impressed, and my feelings of failure were replaced with a slight sense of pride. I thought, well, I’d better be functional on crutches with all the years I’ve been using them!

After the doctor examined me, he began to tell me how the surgery would impact my mobility, balance, endurance, and would eliminate spasticity, which is part of what made it so difficult for me to walk. When he told me this, I felt so relieved, happy, and excited! It was like all my nerves and anxiety began to fade away, and did so the moment we arrived in St. Louis. That might’ve been partly because there was simply no more time to be nervous or anxious. All I could do was take deep breaths, move forward and face the music, as I sometimes like to say.

“You will probably be able to walk with a single point cane indoors, and your walking with crutches will improve in outside environments. Anything you can do now, you will be able to do better,” he said. I smiled big and wide. I’d take any and all improvements in my mobility that I could possibly get from this surgery.

Still though, I couldn’t say goodbye to my surgeon without challenging him with a tough question. It wasn’t necessarily because I wanted more than what the surgery might’ve been able to give me. It was because if I didn’t ask, I would always wonder what the answer would’ve been, and would’ve regretted not getting the question out into the open air. To be frank, I don’t handle all that wondering and regret very well, though it may seem like I do to some.

“Do you think the possibility to walk without crutches will be greater with the surgery than without it, or do you not know?” At this point in my life, I was so used to asking variations of this question to my doctors that it no longer phased me; that is, didn’t make me sad, sorrowful or fearful. Honestly, I genuinely just wanted to hear what the doctor had to say with his many years of expertise in cerebral palsy and spasticity.

“…That I cannot tell you,” he finally said, with his calming and seemingly quiet demeanor. “But you will improve. All of this will improve.”

I had a feeling that once I met my surgeon in person, I would finally, truly be ready to tackle the surgery. At the end of the consult, when he shook my hand for the second time and said, we’ll do our best, I was right. I was ready. Most of all, and perhaps best of all, I felt at peace.