I am weary. It is the Monday after our monthly Saturday ALS support group meeting. Most of the time, I can handle the experience, and sometimes, like this last gathering, it takes all my energy.
Many folks diagnosed with ALS don’t attend the support group, which I totally understand. Upon arrival, there is an opportunity for coffee, a short general meeting for announcements, and a fun raffle, and then we break into two groups: care providers in one group, which includes spouses, family, friends, and any other support people, and those of us with ALS in the second group.
It took almost a year after my diagnosis before we decided to attend. To attend is to admit you have ALS. I tell folks it is like a 12 Step program: the first step, “Hello, my name is Susan, and I have ALS” is the toughest.
It is the connection with the people that brings us back to the group every month. When people share a common crisis, there is instant intimacy. There is no time for small talk. “How are you?” is a loaded question no matter who you ask–the person with ALS or their caregiver. And we know “fine” is not a real answer. There is a lesson to be learned.
Bart died in September. He was a good man. Both Cliff and I enjoyed talking with him and his wife. Two men and their caregivers joined our group for the first time, and we welcomed them with sadness. I am glad they came, but sad they qualify for membership. It was an emotional morning.
Not wanting to leave it on a totally sad note, our group, our fellow travelers, provides encouragement and shares their very personal lessons from their own lives. I am thankful for their support. This is an awesome group of brave courageous people and even though it is sometimes tough I would not miss our monthly meetings for anything, they are worth it.
–Susan