On Hard-Fought Hope, Shared Readily
What my neurosurgeon said 5 years ago that gave me hope for today.
I am writing this just four sleeps away from inducing our third baby. If you had told me this five years ago, I would have either laughed or cried at the seeming impossibility of it from the vantage point of my hospital bed.
Five years ago, I was newly paralyzed, postpartum, post-surgery, living in a rehabilitation hospital. I couldn’t sit up in bed. I could barely stand up with the aid of a walker. I couldn’t drive. I couldn’t take care of myself, nevertheless my infant son, alone. I couldn't plan past the challenges facing me the next day.
But, I did have nuggets of hope that I was holding onto. Doctors and physical therapists here and there told me I had a chance of walking again. Encouraging words from friends and family kept me afloat.
There was one particularly meaningful word of hope from my neurosurgeon that I couldn’t digest at the time, but it stuck with me anyway.
We chose my neurosurgeon, Dr. Daniel Sciubba, to perform my very complex, very risky spinal cord tumor resection surgery after searching the country through every medically-connected friend we had. When we spoke to him for the first time, his confidence reinforced his reputation. He didn’t shy away from the challenge, and his vast experience made him sure that he could do the job.
In the days leading up to the surgery, Dr. Sciubba and his fellows explained what the surgery would entail and what I might expect afterward. Dr. Sciubba was a renowned expert, and he knew almost all the answers to my questions. He had even written and presented academic papers about them.
My tumor had already grown so large that it had permanently damaged my spinal cord. The material the spinal cord is made up of does not regenerate nor is it able to shrink back to its pre-tumor size. The spinal cord is about the diameter of your pinky finger, and my tumor was like the inside of a hot dog filling up the casing. As the tumor grew, it stretched the spinal cord to the point where it had likely become as thin as a fingernail.
He would do the best he could to get the entire tumor out, but it was impossible to know if that would be possible until they cut me open. If the tumor was not contained or had grown into the spinal cord like a spider web, it would do more damage to take it out than it would to leave it in. They would make a gametime decision once they saw what the tumor looked like in the OR.
He explained that no matter how great the surgeon is, I could expect that things would be different with my body after the surgery. They couldn’t tell me what would be affected, only that I would be different. The spinal cord sends signals to and from the brain through the nerves to the rest of the body. Different parts of the spinal cord control different functions, sensations, and body awareness and balance. My tumor was in the area from around my neck (the C4 or C5 vertebrae) to the top of my shoulder blades (the T4 vertebra). Not only was everything controlled by this part of the spinal cord affected, but everything from that point down was going to be affected as well. Our spinal cords are like hoses-- if there is a kink in the top of the hose, then signals are not going to get through to the bottom of the hose.
It was hard not to think, “This can’t really be happening to ME.”
I kept trying to imagine what it would look like on the other side of surgery and ask questions that no one could know the answers to. It was overwhelming and incomprehensible.
One of the many questions I asked Dr. Sciubba was:
“Will I be able to have another child?”
He didn’t miss a beat when he answered: “Of course you will!”
Today, I’m living on the other side of that hopeful answer, about to deliver not my second, but my THIRD child. His hope and confident answer have lived in the back of my mind as Taylor and I navigate this unknown future.
His hope for my recovery and ability to grow my family weren’t some glib feel-good falsehoods. He did not hand those out. He had seen difficult surgical outcomes in his career at the operating table. He knew that the odds are tough and the fight is hard. He spoke from gritty experience and the authority of decades of training and studying, which made his words all the more meaningful.
If you are in a position of authority or of experience, consider how you can readily share the hope you have with others desperate for it. Not a truism or something you don’t believe. But if you have the opportunity to speak words of hope that you’ve earned, then I hope you do.
I think my favorite verse defines what hard-fought, “earned hope” is:
Romans 5:3-8
We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.
P.S.
This week I published my first big policy paper on disability reforms at Able Americans. This is a passion project for me, because I learned personally that anyone can join this minority group of 60 million Americans with disabilities on any given day. I've experienced many of the barriers that I write about or know people who have. I hope you give it a read:
Able to Succeed: A Policy Reform Agenda for Americans with Disabilities
Rachel, I remember waiting so eagerly for each of the updates about your medical progress, and sometimes crying tears of joy with the good news, and other tears with the less-good news. It never ceases to amaze me what you have accomplished - through so much fighting and through your faith, to be certain - over the past few years. You're an inspiration!