by Lily Sands
Aamyotrophic lateral sclerosis (ALS) is a disease that affects nerve cells in the brain and the spinal cord causing the motor neurons in the muscles to eventually die, which results in the inability to control muscle movements, according to alsa.org. Senior Aaron Ach and his family have been greatly affected by ALS since his grandmother was diagnosed with this disease.
According to Aaron’s mother, Catherine Ach, her mother, Barbara, was diagnosed in December of 2012.
“[We] did not expect [the diagnosis] to be nearly as devastating or as severe as ALS; it felt like I got the wind knocked out of me,” Catherine said. “It was so devastating to find out that my mother, who was so physically active for so many years, suddenly had this life-threatening disease that was probably going to take 10 years off her life.”
When the news of Barbara’s diagnosis came, it was important for their family to be together and support each other, according to Aaron.
“One thing I realized about this entire process is the importance of rallying around different people when they are all sharing a common experience,” Aaron said. “Our entire side of [my mom’s] family is very close and I saw my mom rally with her siblings around my grandmother. It was warming to see that so much love could be given to somebody in need and that people were showing they were ready to do that.”
Aaron also believes it is important to be there for someone in their time of need.
“I also realized the importance of being there for someone who is going through something very hard,” Aaron said. “I now know what it’s like to be there for somebody when they really need it [and] giving [them] a shoulder to cry on, just showing love in any form you can. The outpouring of love is the only silver lining of this situation that we shared with my grandmother on so many different levels. It’s been extraordinary to see.”
Rather than mourning about the diagnosis of their grandmother, the Ach family took this as a cause to celebrate life and all the things it presents, according to Catherine.
“From the very beginning, we have tried to create a circle of love and light around my mother,” Catherine said. “In that process, we have recognized the importance of really being able to celebrate all the goodness and love in our family. It’s been amazing to see this circle around my mom continue to grow. So many people recognized the goodness that she offers and the way in which she inspires so many other people.”
The Ach family goes to Cape Cod, Massachusetts almost every summer for a family reunion. One year, they knew it was going to be Barbara’s last summer in Cape Cod, according to Aaron.
“We all celebrated life like nobody has before and it was pretty remarkable to see just how people can come together and rally around somebody,” Aaron said. “In the midst of such a tragic time for the family, [there was] so much love, care and support. We [enjoyed] the time that [was] left and [did] not focus on what [was] to come.”
According to Catherine, despite the family’s strive to keep a smile on everybody’s faces, heartache was always lingering.
“There was sadness underneath it all, we tried not to focus on that too much but the thought of losing someone you love is a very hard thing,” Catherine said. “Because of that and the sadness that is at the center of it all, we tried not to focus on that and made sure that the times we [had were] as wonderful as [they could] be because we know that through the diagnosis of this disease we [had] a very finite time with her.”
While in Cape Cod, the family brought Barbara into the water in her wheelchair and saw in her eyes such peace with the surroundings, according to Aaron.
“It was so hard to see somebody who I had always envisioned as such a strong woman […] in a moment of such vulnerability and physical weakness,” Aaron said.
Throughout the course of her disease, Barbara showed unwavering strength, according to Ach.
“Her smile will be something I always remember,” Ach said. “Even though she can’t speak or eat, or associate in many other ways, her smile is something that has brought so many people to her. At this point, her spirit is stronger than her body [and] people latch on to that spirit. She’s been so strong throughout all of this and she has continued to bring people together even with such limitations, which is a beautiful sight to see.”
Catherine agrees with her son.
“[Barbara’s] amazingly warm spirit and loving presence is something I will never forget,” Catherine said.
The Ach family was doing a fundraiser in Massachusetts at the time of the Ice Bucket Challenge, and the challenge drew even more attention to the fundraiser, according to Catherine.
“Two of our family memebers ran in this road race and we raised over 20,000 dollars while the ice bucket challenge was going on because [of the publicity],” Catherine said.
In the end, Aaron feels it is ideal to focus on the present and not as much on the future.
“Be creative,” Aaron said. “Find new ways to savor the moments you have left with someone who is in a tough place and don’t focus so much on the end, but what you have left.”
