This is one of the pieces from my sabbatical, an intentional period of time that I took to reflect and write about experiences of providing and receiving care in my personal life and professional life.
My earliest memory of community life is Sunday school at Stelton Baptist Church. I'm not sure how old I was. But what I remember was that I was sitting at a table with a handful of others beside a window that let the fall sunlight in. There was an activity at the table but what I remember was that we were talking to one another.
The raw ingredients are: a table, conversation, and "others." I spend my life trying to reproduce that memory.
As the pastor of a church, as a mother, as a friend, as a colleague, as a wife - I try to reproduce moments where people gather around a table to talk with "others." It's easy to gather with people "like" me but forced community - intentional community with people that are different or with people that I do not know well changes me for the better. It's why I am a church person.
Every week I gather with people who have certain things in common while at the same time span a variety of ages, genders, interests, abilities and needs. As a caregiver, I have longed for a community similar to the one that I find in church. Pete and I have wandered into a few MS support groups with hopes to find people who have the commonality of the same disease while at the same time can offer us a variety of ways to see that same disease. We have not found that group yet.
Our first attempt at a support group went horribly. We drove to the East Brunswick public library - nervous, scared, and generally stressed-out - only to find that the group wasn't there. We were lost and so were the folks at the front desk. The amount of anxiety produced by this experience created tears and disappointment - the kind that are only subsided with fried food or cheesecake. We opted for both.
I want a support group. Pete probably needs one, but hasn't asked for this himself. I am persistent and so we tried the same group again. This time I called first only to find that it was December and they were having a holiday party and this probably wasn't the best month to start coming.
We tried again. This time, for some reason, the group had been assigned a different room that evening. The room was not conducive for folks with wheelchairs and scooters. The "leaders" of the group were visibly flustered by the change of environment. The air was buzzing with that frustration and my own anxiety level was not enjoying this experience.
Although the group had said that all are welcome: those with MS and support persons, I was the only caregiver in the room. If you're a caregiver and you're in a room filled with folks who need help. Forget that... if you're human and you're in a room with a bunch of people who clearly need help... you help. And so I helped. I helped folks find a place at the table; I helped folks get around the room. I smiled; I poured soda. I held back tears. This time we did not drown my tears in fried food or cheesecake. We just went home and went to bed.
We tried another support group - it was at a Presbyterian church. I thought I'd feel more at home in the environment, which I did. But I still was the only support person present. Pete enjoyed this group more because there was a speaker and a time for Q&A. It's interesting that he has more of a need for information than for connection. I have more of a need for connection than information. Some have suggested that I try a general "caregiver" support group. I haven't done that yet for a couple reasons. When I ask about the demographics of the groups that some have suggested I find that those groups are filled with two types of caregivers: those caring for their parents and those caring for a spouse with dementia.
At this point of my search I began to wonder if I'm looking for something that I might already have.
The other day, I was sitting in a restaurant with three women from church. We had met in Princeton to support a friend who had moved her husband into a long term facility. He has severe dementia. I have journeyed with her as she made this difficult decision. She and I were joined by a woman who has recently found a 2nd love in her life after having lost her husband to cancer many years ago. She's beaming - all the time. The fourth seat at the table is taken by a woman my age with two teenage sons. We settled into a corner table, surrounded by windows that let in the sunshine.
A table of "others" - each with their ages, genders, abilities, interests, and needs. We each bring our perspectives, our hopes, our losses, our sadness, and our longing for "other." These people in my life make me a better person. They make me think. They look at me when I'm talking and their eyes say, "I am happy to share life with you."
I don't mean to be legalistic with this suggestion but life in community is better than life without it. I still hope to find some room of caregivers to spouses with MS. But in the meantime, I am deeply grateful for the community of others that I already have. I am grateful for others who sit a table with me beside the window that lets in the fall sunshine
What is this blog about?
These are some of the reflections that I am fashioning into a memoir about coming to peace with my husband's diagnosis of multiple sclerosis.