Tomorrow
by Erin Brady Worsham

I have procrastinated all my life. There always seemed to be plenty of tomorrows to get things done.

Like in high school, when I put off writing my senior term paper until the week before it was due. Or in college, when I hopscotched between majors before settling on Theater and German just months before graduation.

But in 1994, when a doctor told me I was going to die, I couldn’t put it off. I had run out of tomorrows. I was diagnosed with amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease) and given maybe three years to live. I was 36.

Ironically, I had really started to get my life together. I was going to art school and felt I had found my real calling as an artist, like my mother. With a dear priest friend I was doing some much-needed housecleaning of ancient emotional baggage. I had accepted the possibility that I wasn’t meant to be a mother, since my husband, Curry, and I had tried for six years to have a baby without success. I was nearing a place of peace in my life.

My newfound peace flew out the window on Sept. 7, 1994. I looked at my life and saw an endless series of wasted yesterdays. It was too late to change that. I went home to die.

That was 14 years ago and I’m still here. The ALS has ravaged my body. I’m paralyzed below the neck and have only minimal movement above. I eat with a feeding tube. I breathe with a ventilator. I drool.

But my spirit is strong. I believe the reason for my longevity is threefold; I love my God, I love my husband, and I love and cherish our son, Daniel Curry Worsham, who was born exactly nine months after my diagnosis.

It was never my intention to use a ventilator until I learned I was pregnant. Then I was like any other mother. I wanted to be a part of my child’s life and I was willing to make concessions to do it. Daniel was 2 when I stopped breathing on Thanksgiving Day in 1997.

Choosing to live with the ventilator did not ensure that my family and I lived happily ever after. Our lives have been full of challenges, which come with the territory when concessions are made. Living life on your own terms is not free.

While the ALS has affected me physically, it has impacted Curry and Daniel equally in different ways. Some have been painful for me to see, knowing that I am the cause. I have had ALS friends who chose not to go on the ventilator, because they didn’t want to be a burden on their families. I am not that noble.

Curry has not had a full night’s sleep in 14 years. I have seen it take its toll on his body. At the end of the day he is physically and mentally exhausted.

When Daniel was small, Curry could not work because he was taking care of both of us. Our growing debt weighed heavily on him, but he never considered putting me in a nursing home.

When I went on the ventilator in 1997, we fought for and eventually won nursing through the state. It wasn’t full-time, but it allowed Curry to leave the house and work. He could sleep without worrying about not hearing my ventilator alarm, which could be fatal.

It’s hard enough making the transition from boyfriend-girlfriend to husband-wife. It’s even harder to transition from husband-wife to caregiver-patient. I have had to accept that Curry needs time away from me. This was difficult because he’s my best friend.

Sometimes he gets an alumni newsletter from his high school. Many of his classmates went on to become prominent people in their different fields. I know he thinks about what he could have done had our lives been different. But in the great scheme of things, in those things that really matter with God, Curry Worsham is the most successful person I know.

It was bittersweet for me to watch Daniel grow in the realization that his Mom was not like other mothers. When he was very young, we would pick up some Whitt’s Bar-B-Q on Whitt-nesday and take Daniel to the park.

One day Daniel played with his two newfound pals until it was time for us to go. I heard him say, “Don’t you want to meet my Mom?” They took one look at me sitting in my wheelchair with the trachea tube coming out of my neck and ran the other way. “She’s a nice girl,” Daniel called after them. My heart broke, but I was filled with love for my son.

In kindergarten some of the boys were laughing about me in front of Daniel. The teacher wisely took them out into the hall and let him talk to them. He told them I was like them and they should ask him if they had any questions.
Daniel is 13 now. He doesn’t cut me any slack or treat me any differently than anyone else. Growing up with a mother with a disability has made him a more accepting person. I will never regret that.

What has been more difficult to deal with is the loss of friends. I have often said that ALS won’t kill you, the loneliness will. When your death seems imminent, people flock to offer support, but when you keep on living, they drift away. It’s not mean-spirited. It’s just human nature.

I thank God for the Internet, which has enabled me to be a freelance artist and writer. I’ve made some good friends through e-mail, as well as on SkiSpace and MySpace. They have enriched my life.

Strangely enough, I have been able to come to terms with this greedy disease after it hit me with everything it had. There are no more unknowns. And, at least metaphorically, I am still standing. Standing and eager to face whatever tomorrows lie ahead. VM