Written May 2006.
After eleven days at UMASS Medical Center in Worcester, the doctors still had no idea what was wrong with my father. He was 47 years old, and his muscles had weakened to the point where they were useless. Easter Sunday, a day before he was admitted to the hospital, my family was in charge of Coffee Hour at church. We had brought cookies from home in a Ziploc bag, and my father couldn’t tear apart the two sides of the bag. He was too weak to open a Ziploc bag. I think it was at that moment when he and my mother realized something was seriously wrong.
The next morning, my mother went off to work, leaving my father resting in their bed. After he had gained enough strength, he drove himself to the family doctor. He was barely strong enough to pull the shifter into drive; I don’t want to think about him applying the brake. My mom got a call, not long after, from the doctor himself, scolding her for allowing him to drive at all. She quickly left work, and drove him to see a neurologist.
I was a freshman in high school when I was pulled out of class by my mother. She was waiting for me in front of the main office to tell me she was driving my dad to Worcester. They had no idea what was wrong, only that it seemed serious.
Once in the hospital, the doctors were baffled by my father’s condition. His muscles had been drastically weakened. Months before, my father was extremely fit; he went running every day. Now, he was too weak to walk up stairs, or even get out of his hospital bed to walk to the bathroom.
My mother spent most of her days in Worcester, leaving my sister, my brother, and me home alone. My older sister was 17, but she hadn’t gotten her driver’s license yet. My mother was also unable to drive at night due to her bad vision, so friends had to drive us everywhere. Co-workers of my mother’s would drive her down to Worcester, and hours later a different friend would pick her up. A friend of my sister’s drove us to the grocery store, because all of my mother’s spare time was spent with my father. We were orphans for eleven days, both parents in the hospital, but only one had a hospital chart. My sister became our temporary mother, getting us ready for school, and ordering us to do chores. Our nerves were already shot; being worried about my father, and sibling fights were not helping. Our family needed order to be restored, we needed both parents to return home.
My father had his own room with a private bathroom. Although his room had a TV, my mom would bring a TV/VCR combo down to him that she had borrowed from the library where she worked. She struggled with the combo every day, lugging it from the car, through the automatic doors at the entrance of the hospital. Once inside, she would place the combo in a wheel chair, and wheel it up to his room. They would lie in his small hospital bed together, and watch movies between nurse and doctor visits.
We wanted to visit as often as possible, and we tried. My mother had usually left by the time we went to school, and was back late after we had gotten home. I only remember visiting him once, a friend of my father’s drove our whole family down to Worcester for the day.
My father looked frail, as if he had lost 30 pounds. His face was drained of all color, and of all his healthy fat. His skin sagged all over, especially under his eyes. No matter how terribly ill he looked, I was happy to see him.
Except for his weakened muscles, my father felt fine. He was still his humorous, sarcastic self, and would make jokes as often as possible. My mother, who was a nervous wreck and probably thought she would lose her husband, had a hard time laughing along with the rest of us. As kids, I don’t think it occurred to us that our father might die. We had had people close to us die, grandparents. They were old, and it was their time. We hadn’t thought it was possible to die at the age of 47.
In between the jokes, my dad had to deal with the doctors diagnosing him with a new disease every day. They gave him Multiple Sclerosis, Lou Gehrig’s Disease, porphyria, metal poisoning, AIDS. The doctors finally settled on Guillain-Barre, a disorder where the body’s immune system attacks its own nervous system, but they knew even that wasn’t the correct diagnosis.
When he finally left the hospital after 11 days, he used a cane to help him walk. His best friend had a stroke in the month before my dad got sick, so they would both walk together with their canes. Two men, in their forties, walking together with canes. It was a sight.
Today, my father is doing well. He still can’t walk correctly. The muscles in his feet were affected, so that now, he can not walk heel-toe, instead, he just plants his whole foot down as one. His hands constantly shake. We do tests at the dinner table, and we all hold our hands out, over the table. His are never steady.
