When asked about my job, I’m eager to share why I love this good, hard work. To keep my answer simple, I think it comes down to the sighing.
Sigh. This is a familiar sound for me. While it’s true that I have three teenagers at home, it’s not their sighs I’m talking about. In my role as support psychologist at the Susan Mast ALS Foundation, I am privileged to work with individuals living with ALS: patients, family members, and caregivers. All are grappling with the complexities of navigating this disease and its progression.
Back to the sighing. Sometimes I hear sighs of weariness. This may be a patient who is physically and mentally fatigued. During our interactions, patients share the difficulties of living with ALS and their accompanying exhaustion. Other times the weariness comes from a spouse of a patient who is tirelessly caring for their loved one. ALS can demand near constant attention from caregivers, leaving these vital loved ones drained. Caregivers have opportunities to share their struggles, frustration, and fatigue during our interactions. Providing a caring and supportive outlet for these thoughts and emotions is fulfilling.
I also hear sighing for another reason: feeling understood. In May, the Susan Mast ALS Foundation began offering Gather, our grief support group. Gather brings together individuals who’ve experienced loss of a loved one due to ALS. Members have opportunities to discuss various aspects of grief, receive support, and connect with others who understand ALS. After a time of sharing and discussion that month’s topic, these meetings typically wrap up with an informal discussion of various questions raised by group members. It often starts with “Have you guys ever...?” or “What about...?”. When the discussion winds down, I often hear a deep sigh and a comment like “I thought it was just me”. Being understood is powerful and healing.
Finally, I hear sighs of validation. While supporting our families, I listen to people struggle at times to verbalize what they are experiencing: “ALS is just so...well...so...” The list of possible descriptors here is lengthy but often includes: relentless, progressive, or demanding. In these moments, I have the opportunity to help them process their experiences and describe what they are going through. As we do this, I often hear that sigh of validation followed by a whispered “yes” or an exclamation of “that’s it!”. They’ve been seen and heard; their thoughts and feelings have been affirmed.