I was eager for him to reach for the safety pin.
When you see a determined young woman treading the clinic or hospital hallways and notice a string of safety pins dangling from the pocket of her white coat, you know she’s a neurologist. I tease the residents that now I know why they went into neurology – so they could play with the high tech tools. The safety pin. The sharp stick. The tuning fork.
Last Wednesday was my first visit to my neurologist in three months, and after a year of this I could do the assessment myself – squeezing the hands while the patient tries to keep his fingers spread, pushing down on the knee, pulling the arms forward. Dr. B. will take the tuning fork to see if I can feel the vibration on the back of my wrist, on my knee, on my shin.
But I was most curious about the safety pin. He’ll have me close my eyes and then alternate touching me with the point and the top of the clasp. Can you feel this? Can you tell which one was sharp? He’ll touch the backs of my hands and then move up my shins.
It has been my impression, these last seven weeks since we started the cyclophosphamide infusions, that my skin sensitivity is improving (not always pleasantly, but I’ll take more sensation over less). But in the dark before dawn, when I drift awake briefly, and my muscles go through their sequence of twitches and spasms, I have doubts. Maybe I’m just imagining the improvements, subtle as they are. Because maybe I need to.
But he smiles. “Definitely improving. Much stronger. Much better sensation.” I have trouble recognizing my own relief.
So we’ll continue with the monthly infusions, at least through March. He’ll taper me off the prednisone (I’m very glad about that – it’s been making me grumpy). I’ll keep on with the physical therapy.
Part of what makes my condition challenging for the caregivers is that it is unlike a spinal cord injury, where there is a single traumatic event. In my case, the spinal cord has been under attack for over a year and we have no way of knowing what the extent of irreversible damage has been. I imagine the battle ground – we are trying to get the healthy nerves to forge new pathways, to develop the connections to the muscles that have been lost by the nerves that will never fire properly again. But these nerves are under attack too, and too often (I imagine) the inflammation gnaws their insulating myelin away before they can retool and they become useless as well. In those dark hours I wonder, even if we are successful in getting the inflammation substantially reduced, will there be enough healthy nerves left? In that little inch or two of firestormed spinal cord I do not have an infinite supply of neurons.
But here Dr. B. sounds a hopeful note that I hadn’t considered. Some of the nerves are being compressed by the swelling that accompanies the inflammation and that compression is rendering them inadequate. But they may not be seriously damaged, and as the swelling decreases, some of them will be restored to functioning properly. There’s a glimmer that I’m happy to have.
We’ll do another MRI in early January so that we can see the status of the inflammation. But for now we can infer that it is going down some. Now it is up to me, with Miranda’s help, to strengthen the muscles and retrain the nerves. While the cyclophosphamide works its vile, but oh so necessary magic, I’ll do my leg lifts and torque my hip muscles and practice my lunges and squats, and pedal away.
I’m prepared for the long journey. For now the improvements remain slight and scarcely observable to the untrained eye. My walking is shaky and weak, my hands can still barely grip and I have no dexterity. How much function I will eventually get back remains as unknown as ever. I know I’m not going to wake up one morning and be miraculously restored.
That’s okay. I’m very happy that we’ve got a plan for the next few months. The improvements are real. The treatment is working. And I know what I need to do.