I’ve never been a homebody, not until last fall. I was always an out and about type person. Perhaps it’s due to having worked in the service industry most of my life, but I think more of a function of my love of being social. I loved sitting in the bar of a high end restaurant having dinner alone or with friends and meeting the people around me. It is one of my favorite things to do. I was able to be with all my different groups of friends by planning outings and visits and runnning hither and yon, and had a splendid time just BEING with them. I would often plan 2-3 meetings in one evening so I could fit everyone in. Even when I couldn’t talk all that much I would hang out with them enjoying their company. Well, now I’m afraid I have committed the cardinal sin of my youth- I CAN’T HANG!
Eh. Oh well. I was out now I’m in, as Marianne Williamson says in one of her many books. Time to transition into a new world: I am IN and I am in LOVE with facebook. Bless that little red haired dollface that invented it! With out it I was ALONE (especially being unable to talk on the phone), now I am reconnected, and able to reach my peeps with a single message! How fantastic is that? This blog and tools like facebook allow me to be present in new ways in the world. True it is an online virtual presence, one step away from 2nd life I suppose, however it is a presence that makes my personal appearances all the more powerful and focused. It allows me to craft my message and be a public person without all the chit chat and gossipy blather that passes for witty repartee these days. It brings power to my speaking and typing. It is I dare say an new ecology to swim in and to influence. ( thank you John Patterson)
Case in point: I was listening to an interview with Tony Judt from an NPR broadcast that my friend Megan Barr sent me via Facebook.
That interview inspired this blog post. Mr. Judt was remarking on how his presence has faded from the day to day lives of his children and family…as he is confined to a wheelchair and attached to medical equipment in his journey with ALS. He likened ALS to being a prisoner in an ever shrinking room. A room that you know someday is going to crush you ~you just don’t know when. His assessment is as accurate as it is terrifying. I am not as far along in my journey as Mr. Judt ~ in my experience I am not as confined just yet, though my speech is so limited I’ve begun to deal with the reality of it being non-existent. His words beg a question: an inquiry into what is it to be present in people’s lives now? What does that mean, what does that look like?
I am in the midst of that exact transition. I am frequently confronted with not having the energy to leave my home, even for scheduled appointments. Some of this may be the lingering effects of surgery however it’s more and more common all the time. I’d just rather not. The truth is when I’m at home alone~ I forget I’m sick. I have very little experience of being ill or being weak, in fact most of the time I feel pretty good and am very happy. I’m engaged in several projects that stimulate my mind and I’ve got gobs and gobs to type about between writing the workbook for the Master Plan, creating the classrooms for the Master Class I lead on Saturday mornings, and several other projects involving being an empowered patient and an empowered caregiver. I think my friends and family will understand that if I EXPERIENCE BEING WELL MORE OFTEN AT HOME, then I should stay home more often!
So if one wants to be present and with people and yet can’t summon the enegry to walk out the door – how can you maintain a presence in your friends and families lives? Given that it’s all about communication, I’m relying more heavily on technology. Facebook chats while being on the phone seem to work well thus far~ as we can hear each other and they have the experience of talking to me ~ and I can acknowledge what’s being said w a mono syllabic response, they get to “be” with me in some way. I’ve actually held coaching sessions in this way when distance has prohibited a face to face. It will soon be time for type to speech software and I think for a touchscreen type pad. My typing is getting worse and worse, lots of double hits on letters and missed letters and frequently transposed order of letters etc etc. I am so grateful to live at a time where the impact of ALS is limited by the advent of new technologies and tools.
I don’t have an answer for the title question yet, I’m still sitting in the inquiry. What I can see is the advantages we now have though one could say they’ve displaced old fashioned visits from friends and family, but I don’t really see it that way. Visits are great and the frosting on the cake of being connected.