The Sustenance of Hope: Epilepsy Awareness Month

“You cannot live on an anecdote, but you can live on hope. We can always have hope. We must always have hope.” -Dr. Jack Lin

These are the words of my doctor as we discussed my new medication. He’d just finished explaining the success he’s found with other patients using this very new and relatively unknown drug… He recognized my pessimism and the familiar feeling of disappointment he must so often see in his patients when the answers are not clearly present after a long, emotionally and physically draining week of testing. And he saw the need in both myself and my husband to find some solace in this latest attempt, being our last chance before brain surgery. But it was when he said those words, I found myself thinking- wow- how lucky am I to be treated by someone, whom after yeeeears of research and seeing patients, still believes in the possibilities of controlling and eventually curing this disease???

After he left my room, I lay in that hospital bed thoroughly inspired and rejuvenated. “We must always have hope” I repeated to myself. He’s right. I’d laughed at the time he said it, and teased him in regards to this poetic and philosophical side I hadn’t seen before. He chuckled and reiterated his belief. It may seem like an insignificant exchange but when you battle the invisible without reprieve, the hope one tries so hard to maintain slowly cracks and begins to crumble, piece by piece. My pieces were few by the time I’d met Dr. Lin…

All optimism must be fed, find sustenance in some manner, and my pieces were few by the time I met Dr. Lin. It was a long 6 days- I’d cried, I stunk, I was trapped in a padded bed, I was itching everywhere, exhausted, dizzy, not eating and (as it turns out) only a dozen seizures. Every time I heard someone announce “event!” and all the nurses would go running to a room, I was jealous it wasn’t mine again. I was floating from an imbalance of meds and my head throbbed. And my heart hurt. I saw people of all ages wheeled past my room, head half shaven, eyes glazed, numb, empty, wires everywhere. I ached for them and I cried wondering where my journey might lead me and speculating as to where theirs had taken them. I was full on fear and empty of hope…

Yet, having gotten to know he doesn’t BS, I believed Dr. Lin’s words weren’t empty and intended to placate. He believed. And I found new sustenance for my own personal battle and in raising awareness for the disappointments and triumphs of others in the same situation. November is Epilepsy Awareness month. And although it is only one month out of all the months and years we are challenged by this disease, it should be a month of hope. A chance for optimism that we may bind closer as a community in this battle while educating others.

This month, I wish our hearts to be full and not broken. I wish our families peace, not pain. But mostly, I wish us all the sustenance of hope. We must always hope. I needed that reminder. And I have a feeling, you might too.

Thanks Doc. ;)

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