Yesterday, Eric and I talked with a friend’s friend, a neurologist who specializes in strokes. I had thought of thousands of questions to ask him, starting with how to be weaned off Kepra and when could I go back to work. However, when we could finally connect, I was wondering why I’d called him. In the past days, I’d been thinking that I ought to wait before I stopped taking the anti-seizure meds – they weren’t that bad after all.
Yet, as we told him the history of my injury and followed with my rehab and evolution, the conversation started to flow. We talked about rehab methods and then transitioned to seizures and anti-seizure meds. Eric described my seizures’ evolution over the years (from major to minor, and the gradual increase of intervals between them), and I asked about the possibility of stopping (even though I had quite convinced myself of continuing to take them). Then, Eric mentioned our neurologist’s wanting to see an EEG before making a decision about a step-down process.
My friend’s friend praised this attitude for its cautiousness and suggested a potential step-down procedure, but then pointed out that there were other preventive methods that could be used instead of Kepra and Vimpat. I remarked that I was willing to wait to be weaned off. So, he started listing all the elements that would help the brain heal: learning, which meant to find joy in exercising and improving; alternative methods such as musical therapy; the recourse to our bodies’ inner frame of skills acquired during our childhood; emotional support through family and community (and here Eric and I thought of the very many BHA friends who had stepped up when I got sick and were still coming over or video-calling to chat and sing); focusing less on when we would heal and more on our ability to do; meditating (which I do and brings me comfort, oddly enough); relaxation techniques to help us sleep (which, unfortunately, are useless for me); and pulling forward instead of backward. Then he had to sign off, but encouraged us to call him with any questions and send him pictures of our work.
We were very reassured by the conversation. I had never felt so happy. It made me willing to stop with the negativity and focus on the things I love. I started to make a list of my favorite clients to call and offer them help. It made me look ahead rather than back. But most of anything, it gave me hope.
Yet, as we told him the history of my injury and followed with my rehab and evolution, the conversation started to flow. We talked about rehab methods and then transitioned to seizures and anti-seizure meds. Eric described my seizures’ evolution over the years (from major to minor, and the gradual increase of intervals between them), and I asked about the possibility of stopping (even though I had quite convinced myself of continuing to take them). Then, Eric mentioned our neurologist’s wanting to see an EEG before making a decision about a step-down process.
My friend’s friend praised this attitude for its cautiousness and suggested a potential step-down procedure, but then pointed out that there were other preventive methods that could be used instead of Kepra and Vimpat. I remarked that I was willing to wait to be weaned off. So, he started listing all the elements that would help the brain heal: learning, which meant to find joy in exercising and improving; alternative methods such as musical therapy; the recourse to our bodies’ inner frame of skills acquired during our childhood; emotional support through family and community (and here Eric and I thought of the very many BHA friends who had stepped up when I got sick and were still coming over or video-calling to chat and sing); focusing less on when we would heal and more on our ability to do; meditating (which I do and brings me comfort, oddly enough); relaxation techniques to help us sleep (which, unfortunately, are useless for me); and pulling forward instead of backward. Then he had to sign off, but encouraged us to call him with any questions and send him pictures of our work.
We were very reassured by the conversation. I had never felt so happy. It made me willing to stop with the negativity and focus on the things I love. I started to make a list of my favorite clients to call and offer them help. It made me look ahead rather than back. But most of anything, it gave me hope.
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