by Emily H. Brechting, Ph.D.
SMAF offers a number of support groups for our community. We provide groups for patients and family members to connect, groups for caregivers to come together with others who understand this role, and a grief group for those who’ve lost someone to ALS. Each of these groups makes it possible to spend time with others experiencing similar challenges and who understand the complexities of ALS.
I’m privileged to be a part of these groups as a facilitator for our grief group called Gather and as a guest for the other support groups. Each time I join a group, I thank the members for letting me into their space and allowing me to be with them. There is something so special about the honesty, sharing of stories, exchange of tips, and vital encouragement that takes place in each meeting.
Perhaps you have ideas about what a support group for ALS families might look like...doom and gloom, overwhelming sadness, or something along these lines. It’s true that tears do fall sometimes in these meetings but what always strike me most are the laughter and smiles.
Yes, you read that right. Laughter. Smiles. Sometimes those smiles are reserved. They might be tiny smiles of gratitude at being truly heard by the group. They might be small, knowing smiles accompanied by nodding to let the speaker know they are understood. Other times those smiles are expansive. Perhaps a member shared the news about a new grandbaby or someone is sharing about a recent vacation. There is genuine excitement to share about the recent joys of life and these groups share in one another’s pleasure.
And the laughter? It’s an absolute delight. Were you to listen in on a group, you’d hear a great deal of chuckling. It’s not uncommon for a member to share about a humorous scenario involving issues with assistive equipment, changes in function, or other intricacies involved in living with ALS. It usually starts with “You’re never going to believe this...” As the story unfolds, the group share a collective laugh at the improbable string of events or the creativity needed to resolve the issue. These are laughs of empathy, knowing, and understanding. Other times those chuckles blossom into full-blown laughter. It's hard to predict what will get the laughter rolling, but in those times, members are wiping away a different kind of tears. Those tears are valuable, just like tears of sadness, frustration, and grief. All of them are welcome at our support groups.