When Multiple Sclerosis is giving me a hard time, I’m often drawn to solitude. I want to weather it alone, avoid answering questions that feel like they’ll take too much of my precious energy to answer sufficiently. Hang on to hope that soon I’ll feel better. I’d just rather not.
Not answer questions that take energy.
Not feel responsible for anyone else’s feelings.
Not feel obligated to be nice and considerate when I’m grouchy and sharp retorts come easily.
Frustratingly, what I feel like doing is isolating myself, and it’s the opposite of what helps me feel better.
When my energy is low and I’m not feeling well, feeling connected helps pull me out of it. That doesn’t mean I’m up for doing a lot, it just means I could benefit from connection that involves minimal effort.
Random texts just saying hi. Like or comment on a social media post. Share something by email with someone because it made me think of them.
I love to think of it as invitation without expectation. I want less pressure and more mutual support. Just knowing someone is there for me is enough a lot of the time. I hope they’ll feel the same.
I read a novel once where the main character described a friend by saying she would call and talk as if it was the middle of a conversation. I loved that, and I’ve thought often about how our interactions are often thought of as individual when they’re really a sentence or paragraph in the story of our relationship.
That image makes me strive to be accessible and continuing the narrative rather than starting and stopping communication.
Whenever I don’t feel settled or in a good place, I try to remember not to test people on a quiz they don’t know they’re taking. If I’m worried about our relationship, it’s up to me to say something. Very few people have let me down, and the rest are happy to engage and nurture our relationship.
When I think people are taking me for granted, I sometimes think about how close we are that they feel okay taking me for granted. That said, often I’m just feeling sorry for myself and all it would take to change is me reaching out to them.
When I see a friend text and think they might need support, I’ll ask if they want to chat by phone. I think being ready to change plans is important. People and relationships come first.
Living hours or states away from people I love is tough. I recently had a conversation with my son and his wife about how I worry sometimes about our relationship. It’s nothing they’ve done or not done, but I can get insecure. I told them I think the world of them and feel guilty that I don’t see them or talk to them more. We agreed that we love the relationships where we can set them and know they’re in a good place. We all agreed we’re in a good place, and it truly set my mind at ease. I haven’t worried since, and it’s a bit silly I ever did.
With tough times globally, there’s something about not being able to do things that make us crave them more. Spending less time with people in person is making me get more creative with how I connect and be more intentional about satisfying what I miss.
I don’t really miss the travel time, but I do miss the casual conversations. The hugs. The ease and casualness of hanging out. The things we’d learn by happenstance or serendipity. The way a conversation builds on each sentence and you don’t know where it will lead. The surprises and the bonding that results.
I want to dissect what I miss and figure out how to make that happen in new ways. Sharing an experience and then comparing what we thought. Allow for quiet or time on the line but not talking. Learning and growing together. Having fun.
Instead of going to concerts, I’ve attended online events by musical artists I love. One treat has been watching from the comfort of my sofa. Another is getting on lists for private shows or calls. One was a 40 person zoom call with a band who just chatted with us and asked questions. A great conversation topic was having people say what the peak and the valley were for them this year. The answers were poignant and heartwarming. We shared together, and my sister in another state attended too. I can’t imagine I would have had an opportunity to have a real conversation and be heard by a band I love before the pandemic.
For my birthday, I held a virtual party that was also a fundraiser. The mix of people was incredible, and it was a joy to have people who live far away and from so many different chapters of my life together virtually. One game that kept the gathering fun and interactive was “Older or Younger.” I pulled together a list of things with how old they are, and I asked the group if I was older or younger than the thing. I’m older than roller blades, The Eagles and Trivial Pursuit. I’m younger than the moon landing, Scooby Doo and the snowboard. We had fun guessing and sharing stories about how we knew the answers or our memories of them. It helps make an awkward venue more comfortable.
Years ago, I did a couple of book clubs that made some things I wanted to do personally into social experiences. One was a hybrid in-person/virtual book club since one person lived in another state, and both would easily lend themselves well to fully virtual gatherings.
“Old Friend from Far Away” by Natalie Goldberg was perfect for an interactive book club. We read a chapter and did a couple of the writing assignments. Then on Friday evenings, we would enjoy happy hour reading to each other what we’d written and talking about our impressions. The sharing of memories and perspectives was fascinating given we all knew each other well but learned so much that we might not have learned otherwise.
In another book club we worked through the book, “SHED Your Stuff, Change Your Life” by Julie Morgenstern. We systematically read a chapter and did an exercise each week, and we shared our work and progress. It was terrific for helping each of us accomplish goals on a project that was overwhelming individually but fun and motivating together.
Connecting can be casual or structured. It can be quick and one-sided, and it can be scheduled and last hours. All means of connecting can be fulfilling, and the quantity or duration of interactions doesn’t necessarily correlate to how connected I feel. I think the odds I’ll feel connected increase, but ultimately it comes down to how genuine I am in each interaction, how willing I am to connect, and how meaningful I make it. For me that means being silly and serious, kind and caring, interested and engaged, genuine and thoughtful, and approachable and responsive. When or how that occurs is limitless.