How do you prioritize your responsibility as a caregiver when there is illness in the family? Especially when your husband is facing new rounds of chemotherapy and a fourteen-year-old autistic son has been placed in a supervised facility for a month as a form of discipline? Or at the same time your mother is beginning to exhibit pronounced symptoms of late-stage amyotrophic lateral sclerosis. (ALS).
These are not direct or hypothetical questions, but thoughts that author Mindy Uhrlaub dealt with as she tried to cope with her mother’s advanced ALS.
Fortunately, Uhrlaub’s husband is an optimist, even when faced with painful rounds of chemotherapy. After visiting her mother, Uhrlaub called her husband with her mother’s test results. His response?
“That does not mean you have it too, does it?”
Mindy also realized that there is a 50-50 chance she has passed a gene down to their sons.
A Tough Decision
After being tested at Stanford University’s medical center, Uhrlaub discovered that she was positive for the C9ALS gene. It was heart-wrenching to have to break the news to her mother, who instantly began to cry and ask Mindy for forgiveness.
Her mother began searching for something positive. Therefore, Uhrlaub did not tell her mother that only a very small percentage of C9 carriers remain asymptomatic. In explaining why she wanted the test, Uhrlaub knew that the answers could be heavy, but deemed knowing the truth and coping with that to be better than remaining ignorant.
Uhrlaub found that although scientists have been studying ALS for forty-three years, they are only recently making advanced progress. She wants to be part of that progress for her family and for herself, bravely emphasizing that since she knows her status, she can participate in advanced clinical research.
ALS/Her Life’s Work
November 2021 marked the success of her first novel, Unnatural Resources. Uhrlaub won the NYC Big Books award for cultural heritage during the most difficult and challenging time of her life. Several of her essays are on the “I AM ALS” website.
She has been accepted into writers’ workshops in Guatemala and Wisconsin as well as residencies in New York and Georgia.
In December of 2021, Uhrlaub was contacted by the UCSF to participate in its ALLFTD-ARTFLs study, a research project of genetic ALS carriers and their families. Uhrlaub immediately began taking tests and participated in interviews through Zoom.
Exactly one year after her mother’s death, Uhrlaub’s stepfather Jimmy passed away. She has no doubt that Jimmy died because he neglected his own cancer and directed all his efforts and energy to the care of her mother.
This was at the onset of the COVID pandemic, and it was also time to speak to her sons about the disease. Ethan and Alex heard ALS mentioned many times and finally asked Uhrlaub if she had the disease. She answered truthfully that she did not and would be travelling frequently for testing as part of a clinical trial. Her sons were satisfied with this explanation.
Over the next few years, Uhrlaub will be travelling to Boston and MGH every six months participating in various tests at both hospitals. Her sons thanked her for making an effort to see that they did not get the disease.
If there is one thing made clear by Uhrlaub’s story, it’s that she believes that life—even with cancer—is a gift.
