While cleaning some files on an old hard drive, I came across a letter of recommendation I wrote a few years ago on behalf of my former wife Stephanie, and decided I wanted to share it with you. The letter does not involve me in any way, except in that I recognized the truths expressed in it.
So why make it public now?
In small part, because I believe it to be a necessary addendum to impressions I may have left before. But even more, I think it is important because it celebrates a large portion of Stephanie’s character. I believe it is very important that such things be celebrated. A recurring theme in these musings has been the observation that God erases nothing, but He instead redeems all things and works them together for ultimate good – that even things that are dark and painful are first enlightened, and then become vehicles of light as they are laid at the feet of our Lord. Stephanie’s living example is one of the reasons I am convinced that these things are true.
Last, there are many good people who struggle with seizure disorders, and with the stigma, “the box” into which most of us try to force them or their family members. I do not have the power of Stephanie’s witness, but if I can point people to her; if they, too can be encouraged and drawn to this reflective light, it is a good thing.
Here is my letter ……………
Women & Epilepsy Initiative
Ladies and Gentlemen:
I am sending you this letter of recommendation in support of the nomination of my wife, Ms Stephanie S. Sawyer, for the National Making a Difference award. As a spouse, you may of course cast a bit of a jaded eye on my opinion, but I have had the unique privilege of walking with my wife for over 25 years as she worked to live with and overcome epilepsy and its effects.
As she shared her struggle with me, I learned that the social effects of seizure disorders can be every bit as devastating as the physical: that shame is met with either denial or retreat from society, that the messages of “you can’t do what everyone else does” and “you’re defective (but we’ll pretend you’re not)” and again, just “you CAN’T!” are inescapable. I learned from Stephanie that these messages are so loud that it is almost impossible not to internalize them, not to believe them. They become truth. They become what Stephanie describes as “The Box” by which one is defined, inside and out.
She taught me this by sharing her struggle with me, by rejecting both the denial and the retreat from the pain. She had the courage to face herself, and to let others see the struggle, and in the process, opened the door to healing for herself and others.
As Stephanie has gained healing from the shame and isolation, I have seen her (while still searching for better medical relief) accept her seizures as something which could somehow be used for good, and from there she has able to speak hope to “fellow strugglers” in a way no one can who has not walked the walk. I have seen her continually speak to strangers in casual settings such as the Post Office, the grocery store, etc. bringing up her lobectomy surgery and seizure disorders. This has the great effect of “de-shaming” epilepsy. How can one push it into the shadows when there is this bright, articulate enthusiastic woman in front of you, just bubbling over with enthusiasm about life and possibility? Also, statistics being what they are, for every 10-15 strangers she talks to (and that’s just a couple of day’s worth!) Stephanie encounters someone whose life, either directly or in a family member, has been touched by seizure disorder. The breaking of isolation, the possibility of victory, the gift of hope is difficult to fully appreciate for those of us not so affected. Mind you, this is not primarily a tale of hope through new medical marvels – Stephanie still has occasional seizures – it is hope of delivery, and escape from “The Box.” She has begun getting letters from around the country, responding to her vision of victory.
It is this two-fold gift that I believe commends Stephanie to your attention: The breaking of the stigma of epilepsy in society by the refusal to wear it, by her continuous public proclamation of the emptiness of that stigma both by her word and presence; and The gift of Hope, that no one struggling with seizure disorders, or with other chronic conditions (medical or social) must remain defined by that condition. In her words, “Hope is ours if we will take it and believe.”
R. Eric Sawyer