by Erin Brady Worsham on Mon, 2014-09-22 14:31

Our son, Daniel, graduated from high school on May 18. He turned 19 on June 12. I turned 56 on August 6. Daniel left for college at the University of Tennessee in Knoxville on August 15. I “celebrated” the 20th anniversary of my ALS diagnosis on September 7. And my husband, Curry, and I will truly celebrate the 27th year of our marriage on October 3 … Milestones … Important milestones … Milestones I thought I would never see.


A child I thought I would never have … Even before my ALS diagnosis on September 7, 1994, I had begun to accept that maybe I wasn’t meant to be a mother. But hearing the finality of the doctor’s words that day, I mourned that there would be no living sign of my love for my husband left behind on this earth. I had not conceived a child in six years of trying, and I had no hope I would do so now.

I had a normal period in September but missed in October. In November, I began to feel a little sick to my stomach. I thought it was all just the ALS. We didn’t dare hope it was anything else, but Curry bought two pregnancy tests anyway … They were positive.

An ultrasound revealed that I had conceived on September 8, the day after my diagnosis. My OB/GYN, Dr. VanHooydonk, was incredibly supportive throughout my pregnancy. He once said to me, “It doesn’t matter if you live five days, five months or five years. You’ll be happy you had this child.” My neurologist, he who will not be named, wasn’t supportive at all and asked me if I had done it on purpose. He pretty much recommended I abort this incredible gift and quickly became my ex-neurologist.  

(For all you Catholics out there, the day I conceived my child, September 8, is the day the Church celebrates Mother Mary’s birthday. This is beyond ironic, because when I was born I almost died. My mother, who was very devoted to Mary, placed me in her protective care and I lived. What a beautiful gift of intercession for me to conceive my only child in the 11th hour on Mary’s birthday!)

On June 12, 1995, I gave birth to Daniel Curry Worsham and we became a family.

An age I thought I would never reach … On that pivotal day in 1994 when we heard the grim news, I was 36. The doctor told us people lived an average of three years. I was certain I would never see 40. When I asked how I would die, he said I would stop breathing. “Well, let’s hope I get hit by a mack truck before then,” I replied. You see, I didn’t have a very good attitude that first hour!  That changed dramatically, even before I found out I was with child. And when that discovery was made, I was walking on air! 

Contrary to my initial feelings that I didn’t want to live dependent on a ventilator, I now saw it as a means to be part of my child’s life. I desperately wanted that and Curry supported my decision. I stopped breathing on Thanksgiving Day, 1997, when I got down to 7-10% of my lung capacity, was rushed to the hospital after they got me breathing again, and went on the ventilator.

I am under no illusions. Just because you breathe with a ventilator doesn’t mean you won’t die of pneumonia or any number of other things, just like anyone else. I know I have lived this long because I have a devoted husband who takes care of me and oversees my other nursing care. It’s a rare individual who will give up their dreams for another, but that’s exactly what he did. If it wasn’t for the ALS, I know he would have returned to his first love of acting when the contemporary country quartet he sang bass in broke up after ten years.

Now, don’t get the impression we’re a couple of saints because we’re definitely not!  There have been many days of tears, frustration and, yes, YELLING. That’s how ALS makes you feel at times… incredibly sad, extremely frustrated and angry. Still, against all odds, I am 56 years old.

Years with my husband I thought I would never have … By all rights, Curry Worsham and Erin Brady should never have met as actors at Circa ’21 Dinner Playhouse in Rock Island, Illinois, in October 1980. Curry is from Richmond, Virginia and almost took a job with a theater company in Flat Rock, North Carolina, instead of playing Captain Von Trapp in “The Sound of Music” at Circa. I am from Louisville, Kentucky, and flew in when my job in Ocala, Florida, playing Dolly Levi in “Hello Dolly” at the Golden Hills Theater, was finished and joined rehearsals for “A Christmas Carol” already in progress. It was a chance meeting between two actors who happened to be at the same theater at the same time, but in different shows.

For the next seven years we worked in different places and visited each other in-between, though we did do two shows together in Florida. I think it was after my fifth production of “A Christmas Carol,” two of them touring, that acting stopped being fun for me if I had to be away from Curry. By this time, Curry was out in California with the contemporary country quartet, Indian River, trying to get a record deal. They had been named and encouraged to stay together by Burt Reynolds when they were such a hit as the quartet in “The Music Man” (with Jim Nabors and Florence Henderson) at his theater in Jupiter, Florida.

I joined Curry in California. It was very strange going from being a stage actress to doing extra work in movies, commercials (Yes, I saw Michael Jackson’s hair catch on fire!) and TV shows ("Cagney & Lacey," "Moonlighting," etc.). Truth be told, while these sets can be very interesting to watch function with all the cameras and lights and such, the actual extra work can be really boring unless you’re given some special business to do. Curry and the group were always doing fun jobs. They were an opening act at the Palomino and opened regularly for Joan Rivers (God bless her!) at Carlos ‘n Charlie’s on the Strip. They appeared on “Alice” with a very young Bill Maher playing a cop.

In 1987, after years in LA, the group decided they needed to be in Nashville, Tennessee, and we moved back to the land of four seasons. And after seven years of traveling and adventures, Curry Worsham and Erin Brady married in a little, stone church on a beautiful day in October. We happily settled in Nashville, the biggest small town in the country, and began almost 27 more years of adventures. No, no one in their right mind would choose to venture down the path of ALS. We did not welcome it, but Curry wasn’t daunted by it. I look forward to future days with this beloved man, my husband.

Milestones… Important milestones … How else would we know where we are on life’s journey? … Dear Lord, I’m holding out for one more milestone. I would dearly love to see our son graduate from college. Are you game? … And maybe we should invite a certain neurologist I used to know.

About the Author

Nashville artist and writer Erin Brady Worsham was diagnosed with ALS on Sept. 7, 1994. She began using the ventilator on Thanksgiving day in 1997 and has never looked back. She continues to work and exhibit her art as a professional artist.

Says Worsham, "One of the reasons I believe I have lived so long, other than my great husband and son, is that I don't think about ALS. My blog titled Cosmic Connection is about contemplative observations of the world around me that ALS has allowed me to make through the peaceful stillness it has imposed on my life."

To learn more about Erin Brady Worsham, read the following articles about Erin and her life with ALS:

Creativity Soars Over Barriers

Having Children After an ALS Diagnosis

A Turn of Fate

Secrets of Survival

The Artist Inside

First Person Singular: A Magic Carpet Ride

Staying Alive: Does Personality or Belief Make a Difference

Mind Muscle

Life on the Vent

Connect with Erin on Facebook and check out more of her artwork for sale on Etsy.

Erin's blog Cosmic Connection is exclusive to MDA's ALS blogs.

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