Last month, I crafted two posts about persistence and endurance. This month, the Susan Mast ALS Foundation is focused on the theme of “Ride On” as we prepare for our annual fundraising event PedALS. It strikes me that we’re often inundated by motivational quotes about perseverance. They inspire and encourage us. Consider these examples:
“It always seems impossible until it’s done.” -Nelson Mandela
“Perseverance is the hard work you do after you get tired of doing the hard work you already did.” -Newt Gingrich
Persons with ALS (pALS) demonstrate unimaginable perseverance each and every day. So do their caregivers who provide vital assistance all day long. From a society-wide standpoint, the word perseverance often summons images of extraordinary athletes like long-distance runners. For you Olympics fans, you might envision the women's marathon in Tokyo during stifling heat. Feats of perseverance look different in the ALS community. Perseverance is sticking with a meal—even after 45 minutes. Because you know you need those calories—even when you aren’t hungry or interested in the food. As a caregiver, perseverance shows up in countless ways. It’s making the 9th adjustment to help your pALS find a more comfortable position. It’s the 3rd (or 4th or 5th) call to the medical provider to get the equipment your pALS needs.
ALS is a moment-to-moment exercise in perseverance.
Lately, I’ve engaged in numerous discussions with pALS who are exhausted. They are physically drained by the demands of the disease. Also, they are emotionally fatigued by not only ALS, but the ongoing impact of the pandemic on their lives.
Where do we turn when persevering seems impossible? Grace—Love. Kindness. Goodwill.
We typically think of grace and graciousness as they relate to how we interact with others. But so often we need to extend grace to ourselves. It’s okay to acknowledge the enormity of the challenge, the struggle of navigating every single day, the crushing fatigue. In those moments of weariness, let's pause and offer love, kindness, and goodwill to ourselves as we persevere.
This month, Marsha M. shares her perspective as a pALS navigating the process of preserving her voice and preparing for augmentative communication needs proactively:
“I chose to do voice and message banking because my husband and I were noticing changes in my voice such as a “gravelly” voice and low volume as the day progresses. A main issue was fatigue and lack of energy to communicate at length with friends who come for a visit. I realize that I am approaching this common voice and speech concern of ALS a little early; however, the process to get eye gaze technology is fairly involved. I wanted to be forward looking and plan for the days to come. Hopefully this will give me greater PEACE and CONTROL…that technology can be my helper.
“I was concerned about the time it would take to record messages, bank them, meet with a Speech Language Pathologist (SLP) to complete the Augmentative and Alternative Communication (AAC) evaluation and then learn how to use the eye gaze technology. I wanted to get it done before my situation worsened and I wouldn’t have the energy to carry out the process one has to go through to get the right type of communication device.
“Something to keep in mind throughout this process is for someone (patient or caregiver) to be proactive and follow up at all stages keeping good documentation. Natsumi Asanuma is one great SLP that Susan Mast ALS has on their staff. Be sure to include her on your journey to find the best communication device for you.
“I would recommend others bank their voices and messages because it can give you HOPE to still be around, to be able to communicate with friends and family, to share your life stories and lessons with family and to leave your messages of LOVE for family members in your own voice.”
Do you have questions about voice and message banking or communication tools? Patients and families of the Susan Mast ALS Foundation can contact Natsumi Asanuma, SLP, at email@example.com or 616-622-3066 ext. 4 to receive assistance.