I had three nerve biopsies last week on my right leg to assess whether I have any small fiber neuropathy, which seems consistent with the patchy pins and needles feelings I have been having in my hands, feet, legs and face since June. The biopsies were taken by Neurologist 2. During this appointment, we had a little more time to discuss the results of the nerve conduction studies (the “blink test” in particular). The results were quite interesting. I had six electrodes on my face, three on each side forming half circles around my eyes. A nerve near the eyebrow was shocked on each side and the path of the electrical response was recorded via computer. When the nerve near my left eye received an electrical shock, the signal travelled from the left side of my face to my brainstem and back up the right side of my face. This is what is supposed to happen. When the nerve near my right eye received a shock, the signal travelled down the right side of my face and then stopped – there was a complete absence of a signal on the left side. When this pattern of results occurs, she explained to me, it is usually an indication of a problem with the brainstem, something in the brainstem is blocking the signal. Because she said “usually” I asked what else besides an issue with the brainstem could cause this to occur and she repeated her answer: “usually it is a problem with the brainstem.”
I won’t lie, this really stressed me out. What could be wrong with my brainstem? Is this what is causing all of my symptoms or just some of them? And if it is going to get worse, what should I expect? Numbness I can live with – will I be able to live with whatever is coming? It is very easy to get caught in an endless loop of thinking and Googling, trying to figure out what is going on, what else I should be asking, wondering about what is going to happen next. Or even just pondering with amazement what scientists and doctors have managed to figure out – that they have developed tests like this that can localize a problem with such precision, what we can learn about nerves and the brain through these tests (which seem somewhat medieval).
Now that I have been getting off and on this merry-go-round for what is going on five years, I am more and more cognizant of the fact that this is not an entirely productive use of time. And so I meditate.
In meditating, I find two exercises in particular very helpful. The first is a body scan – just scanning from head to toe, focusing on each body part and how they are feeling. And I remind myself as I do this, that I am not in any pain and that – at this particular moment – I am thinking clearly and can do pretty much everything I want to do. No matter what a particular test says or doesn’t say, my body is functioning reasonably well right now. That’s a good reminder when the “what ifs” start getting overwhelming. The other exercise I do is based on an exercise I learned through the meditation app Headspace. I imagine liquid sunshine is spilling into my body from the top of my head, trickling through my body to my toes, then filling my toes, my legs, my chest and arms, all the way up through my body until it overflows out of the top of my head. I have adapted this exercise to imagine black flecks of disease scattered throughout my body. As the liquid sunshine fills up my body, it carries these black flecks up and out. I try and remind myself that this is what I am trying to do with all of the tests, surgeries, trips. Washing away the black flecks of disease. It is a very calming and reassuring feeling and really helps change my perspective on this medical process – changing it from something frightening and invasive to something nurturing and healing.
This week, whenever I feel anxiety about what my upcoming scans will (or won’t) find, I will try and bring myself back to the present and remind myself I am not in pain. I am functioning well. I am happy at home and at work – I am LIVING. And I am slowly but surely figuring things out, finding the black flecks and hopefully removing them. I will take a deep breath and let the sunshine flow.