Editor’s Note: Domer Diaries is the newest storytelling series from the Alumni Association where members of the Notre Dame family tell their stories in their own words. This week’s Domer Diaries entry comes from Michelle Melland ’88, an Army ROTC alum who was diagnosed with ALS in 2011 and has since embarked on a second career as a freelance writer.
Name: Michelle Melland
Class Year: 1988
Residence Hall: Badin
Student Activities: Army ROTC
Occupation: Freelance Writer
Local Notre Dame club: Notre Dame Club of Kansas City
You were diagnosed with ALS 10 years ago, but you have continued your career as a freelance writer, maintain a book review blog, and recently saw your twin daughters graduate high school. What do you want people to know about living with ALS?
I was only 45 when I was given a terrible and inevitable death sentence — an ALS diagnosis. My twin daughters were just starting third grade. I wasn't ready to say goodbye to them or my husband, Paul. ALS patients steadily descend into paralysis, which includes the diaphragm muscles which are essential for breathing. At some point, ALS patients need to make a decision to succumb to the ALS or extend life by going on life support. I chose to go on a ventilator. I frequently say it’s certainly not for everyone but has proven to be a viable solution for my family and me. People should know that it takes substantial resources to care for an ALS patient, so please offer a helping hand when you hear of a family faced with ALS, or consider donating to a charity such as the ALS Association. As an extreme example of a “helping hand,” several volunteers from our parish, including a Notre Dame architecture grad, renovated our 80+-year-old home to make it accessible for me. I also want people to know that although our bodies are out of commission, our minds are still fine (think Stephen Hawking!). Personally, this has enabled me to begin a second career as a freelance writer. Don't write off people on ventilators — we're still able to contribute.
What books, music, movies, television shows or other forms of art have had a lasting impact on your life?
Thanks to my parents, I've been a lifelong reader. My mom loved mysteries and worked in a library for many years and my dad was an ardent nonfiction reader (so is my husband ... hmm). One “good” thing about ALS is that it's given me time to read again; young children and a full-time career left little time for reading. I really don't have a favorite book — I have several favorites. But it's the act of reading that I enjoy and that provides comfort. I love getting immersed in a great story or trying to solve a tricky mystery. When I started reading again, I felt the need to talk about the books. That's why I started my book review blog, Book Thoughts From Bed. In terms of other art forms, I've always been a crafter and even sewed most of my SYR dresses. I can't do the hands-on side of crafting now, but I collaborate with one of my long-time home care aides to make origami crafts — I design and she folds. We even have an Etsy shop. Recently, I figured out how to use an online tool to design origami paper, and I've expanded to digital scrapbook paper. It's become a bit of an obsession. And, of course, I always enjoy listening to 80s music, because 80s music is the best music.
What did you learn from Notre Dame that helps you today?
I loved my time at Notre Dame and it's had a lasting impact on who I am today. The academic side of my experience taught me to be curious and how to organize and communicate information, all of which has served me well throughout my professional life, including now on freelance writing projects. My experience with the Army ROTC unit made me more resilient and taught me that I can withstand and achieve more than I ever thought. But one of the most important lessons was learned after I graduated, and that's the value of lifelong friends. While at school, I was part of a group of six close Badin Hall friends. After graduation, communication was a little spotty, but we were always there for each other. Soon after I was diagnosed, they began visiting regularly to see me and to get to know my daughters better. The pandemic put a temporary hold on visits, but we now have monthly Zoom calls. Through my blog, I also reconnected with one of my good friends from ROTC and we've had fun reading together and texting about life. And Notre Dame football!