Not Knowing If I'm Living or Dying

I finally got out of the hospital right before Christmas. It seemed that I had improved somewhat, but my discharge papers read "bulbar palsy" as my diagnosis. I didn't realize this until much later. I went home with a feeding tube because I could not yet swallow food. Let me tell you, when you haven't eaten real food in over 3 weeks, every food commercial is pure torture.

A physical therapist, occupational therapist and home nurse were assigned to me upon discharge from the hospital. I had to have someone staying with me every day. My family and friends were wonderful. One time (thankfully in the evening when my husband was home to help me) I went into the bathroom and closed the door. Our bathroom at the time was pretty small. I was so weak I fell off the toilet! I didn't realize you needed muscle or strength to sit on the loo! Yet here I am, on the floor, half blocking the door, waiting for my husband to rescue me. I'm sure that's exactly what he pictured when he married me three and a half months previously.

Christmas that year was bittersweet. It was joyful because I was out of the hospital, I was alive, and had an amazing family. It was sad because I didn't know if I was going to live or die. It's a little tough to celebrate with that on your mind.

On December 29, the feeding tube came out! The home nurse did a swallow test, and I "passed." The first food I ate after being home was my mother-in-laws mashed potatoes and gravy. Nothing ever tasted so amazing in all my life.

Once I got to eat solid food again, I really started improving! This was looking like Myasthenia Gravis more and more every day! I never realized I could be thrilled to have a chronic, incurable illness! When I returned to the neurology clinic at the U of M in February of 2001, all of the doctors were astonished. The head of the neurology department admitted I was a true miracle. I couldn't have agreed more. It was rather amusing; he kept calling doctors and nurses in to the office saying, remember her? I didn't remember a lot from my hospital stay, but they remembered me. I gave all the glory to God, for it was He who saved me.

The next few years held promise and uncertainty. My future looked a little brighter knowing I more than likely had a treatable though not curable disease. I appreciated life in a whole new way. I steeled myself for the challenges ahead, at my husband's side and at God's feet.