Written August 20, 2010 9:00pm
Anita slept peacefully through Thursday night while sedated. It is planned to get her back on a more normal sleep pattern, i.e. sleep at night, more awake during the day over time. Anita had her first round of Occupational Therapy (OT)/ Physical Therapy (PT) this morning. She sat up on the edge of the bed, and gave a “thumbs up” to all present. I guess she approves of the PT and the OT in particular!!! Later in the morning, another lumbar puncture (spinal tap) was performed to obtain fluid for various tests. She had the last dosage of the steroid program on Friday afternoon. Results of a serum test for the presence of Neuro Myelitis Optica (NMO) antibodies came back negative. Accordingly, her exact diagnosis remains unknown, however still points to MS or a disease akin to an aggressive version of MS. 

I remember signing the will. My friend had to help me lift my right hand. It’s ironic we had just had the papers drawn up a few weeks before my hospitalization. We finally initiated the will because we didn’t have to choose a guardian for our children. They were of age now so the process was simpler. If trust funds and end of life decisions can be regarded as easy, the time was ripe. Little did we know I would be knocking on that door just a short time after the paper work was completed. The lawyer came to the hospital to witness my signature. There were balloons tied to the bed, lending a rather festive atmosphere to the occasion. That’s the last thing I recall from that particular room. The sun shining through the window, the room so bright that no overhead lights were needed. Signing those papers. Not thinking that it might be my last good effort at independence.

 I don’t remember the frantic ambulance ride to the local, large teaching hospital. I don’t remember being intubated. “There’s been a lot of bleeding due to the steroids.” “She will need a transfusion.” “We’re going to put her in twilight sleep.” Were they talking about me!? I remember my cousin hanging a Happy Birthday banner on the wall, telling me, “Everything will be ok, just have faith.” I remember lots of white lab jackets, an entourage around my bed. I couldn’t think straight. Thoughts rolled in and out my head like minnows through a fishing net. I couldn’t hold onto a thought long enough to process it. I couldn’t stay awake. I had to trust whoever was holding the net. I needed someone else to be in charge.

The dreams I had were so vivid. I know they were just dreams but they have stayed with me as if they just visited last night. I was in a hammock in a covered outdoor picnic shelter. There was a granddaddy long leg spider the size of a minivan bouncing a ball beside me. She (I know it was a she because of her eyelashes and voice) was telling me “they” want to put you in twilight sleep. I felt a primal fear while swinging in that hammock. Not of the spider, but of my situation. I wanted “them” to leave me alone. I tried to scream, “Noooooo!” but I couldn’t. The spider assured me, “all will be ok. Don’t fight.” But I did fight and I’ve been fighting ever since.