When we finally entered the right building on the grounds of the National Institutes of Health in Bethesda, the sight of patients and doctors from every corner of the world had an immediate impact. Seeing very sick children hooked up to medical devices and being wheeled around the hospital lobby by their families, we were… Continue Reading
Author Archives: Leslie Edwin
The Cage
“It’s like a cage, Mommy,” my daughter lamented at the daily regime to keep herself healthy amidst a long-term illness. She had refused my suggestion to add yet another “to-do” item on her checklist. She tried to explain what it was like for her. I didn’t understand then. I do now. I spent ten years… Continue Reading
Adirondack
Straddled between two transsphenoidal surgeries—one failed and a second scheduled for six weeks from now—I have pulled my mammoth body out of bed to shuffle along the trail by our home. It is one of those dog days of summer where the heat settles on you like a blanket and you pray for just the… Continue Reading
Jennifer B.
There would be a couple elements in my journey I would change if I could. One would be for it not to have taken so long to get a diagnosis but the most important thing I would change would be not doubting myself. I knew something wasn’t right but I let others comments like “that… Continue Reading
Samantha B.
You may think monsters aren’t realOh but dear, here’s the dealThere’s a little monster you see named Cushings and it’s inside meOne day I wish I was free and this monster would let me beI had two monsters you see but only one was living inside me. The other monster lived with me and was… Continue Reading
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