Last week I attended a memorial service for my
congregations' piano accompanist. Lois
was a wonderful pianist who probably didn't realize how talented she was, and
was also a wonderful human being. I
don't think she tried to be special, I think she was just being herself, but
she connected and touched many people.
This was evident not just by how many attended the memorial, but by all
who spoke. I didn't stay for the entire
service (too long and wrong time of day for me), but I'm glad I was there. Lois certainly wasn't famous in the
traditional sense of the word, but she will be missed by many including myself,
and I keep thinking that her legacy - to be so connected - is wonderful.
I heard her daughter say as I left the memorial that Lois
"was the real deal" when it came to friendship. Friendship is very important. All relationships take work, and friendships
are no exception. That's not breaking news, I realize, nor is the fact that it
can be difficult to actually maintain friendships. This is true for a lot of people for a lot of
reasons, but - yes, there's a "but" - it's more complicated when
invisible disorders create limitations.
Ideally, people connect over mutual activities or interests, or just get
together. This is easier said than done
when doing things, even something simple, isn't so simple.
I feel for anyone with an invisible (or visible for that
matter) disorder who lives by themselves; Ron and I help each other out in a
variety of ways. I always miss a part of,
or all of some family events, but we go as a family down to Hyde Park (Chicago)
a few times a year to visit my parents, and I am now usually able to go to
Ron's cousins in Evanston when they hold a Passover Seder. I'm grateful for Kol Hadash Humanistic
Congregation, and attend an occasional Shabbat service, monthly Adult Education
programs on Sunday mornings, and am a member of the youth education committee
so that I still know what's going on in the Sunday School.
Connecting to other people is important, and the internet
is a wonderful resource. But being with
people is still, I think, really important.
There's basic outings that people do, like going to movie or live
production theatres which I don't do. I
AM able to attend the annual Deerfield High School (DHS) musical. I'm very familiar with the auditorium, and I
know what I can do, how I can manage as long as the production isn't too visually
intense. Same goes for plays that are
put on in the Studio Theatre. This is
why I did not attend Fall Play 1 at DHS, but I did attend the second one, a
production of The Importance of Being Earnest.
I know that people generally go out for lunch, dinner, or
meet for coffee, and it's just part of the social fabric of their lives. Going to a restaurant is complicated, and not
in truth something I currently enjoy. It
takes planning; it's much better to go when it's not crowded, because lots of
people and noise is a problem. I can't
deal with TV screens, loud music, or ceiling fans. I need to call ahead to make sure that I'll
be able to get food. Although I've
always ended up being able to eat, the food accommodations do not always go
without a hitch. It's nice not to have
to cook, but because of all the planning, it's not a stress free
experience.
In my ideal world, I would have the energy to do what I
want, regardless of the time of day, with only the normal constraints people
have; time and money. And everyone would
be understanding and accepting of limitations.
I would speak up when necessary, and otherwise my limitations would be
irrelevant. When or if my health did
come up, I would always be able to find the humor in my situation, rather than
feeling like I just bumped into a wall. I
would never have to stop and think about the query "how are
you?". There's nothing wrong with
this social greeting, and it's nice when people really want to know how I'm
doing. But at times I feel like I need
to de-code the encounter; is this someone casually asking as so often happens,
or do they really want to know? It's
difficult coming up with the appropriate reply, especially since my progress is
slow, and I usually resort to "I'm OK".
In my ideal world, the sadness and frustration, knowing that I'm missing out
would be rare. I wouldn't have to remind
myself that my situation could be worse.
I wouldn't have to tell myself to focus on the events or outings or
whatever that I can participate in, and try not to pay attention to all the
other stuff. Facebook is a wonderful
place to connect, share stories and videos, and learn. But it's also a reminder to me of what I'm
missing out on; when someone posts a picture, or talks about something they've
done. The picture or status might be any
number of ordinary or special occasions. I know there's a busy, mobile world out there,
full of people doing all sorts of things.
I worry sometimes about maintaining friendships given
that I'm kind of out of the social loop, and I know that I'm not alone in feeling
this way. You don't have to be a senior
citizen to have medical problems of some sort, and I know I'm not the only
middle aged woman with invisible disorders.
So I let myself, as with other issues, feel the emotions, and then do my
best to move on. My reality right now is
my reality, and wishing it were different doesn't make it so. What does make a difference, what CAN help is
doing my best not to get stuck. For me,
a social life that expands beyond the internet requires thinking creatively,
looking for whatever opportunities I CAN participate in. The opportunities don't have to be huge
chunks of time; an hour or even a few minutes here and there can build
connections and make a difference. And I
have to remember that if I'm doing the best I can to create what I can for a social life, and to sustain my
friendships, that's all I can ask of myself.
Thank you so much for sharing. It is always good to know that others are going through the same ordeals and can truly understand.
ReplyDeleteYou're welcome!
DeleteI have trouble being social. I live by myself. I don't know anyone my age in the town I live in. I don't get out of the house much. Going to restaurants is such a pain! I've always been socially awkward/shy and had trouble making friends and haven't done much dating at all. I've been dealing with this for 10 years. It started when I was in college. I'm 32 now. I feel like I haven't really lived.
ReplyDelete