Normally we don't have house guests - it adds challenges
that I honestly don't want to deal with.
However, our younger daughter Cara participated in a French
exchange/correspondent student program through her French class at her high
school. Cara stayed with a French family
last summer, for two weeks, so we now have Cara's correspondent, Lovely Puech,
staying with us for two weeks. She's
very sweet, and eager to learn, which is great.
There are several specific challenges to having Lovely as a guest, but I
couldn't let my invisible disorders keep Cara from participating in the
"exchange" part of the program.
Some of the challenges are spatial (which has to do with
my sense of where I am, which grounds me): an extra chair at the dining room
table, a missing chair in a different room, a bedroom with an extra bed to
navigate around, or no chair to sit on. The
number of people taking my daily walk with me and Cosmo varies more. None of these are huge changes, but when
something in my regular living environment changes, my body has to figure out
the space differently. It's a layer of
effort that I don't normally have to do - my activities and routines at home
are more typically where my challenges lie.
When my physical environment changes, it affects my sense of balance, my
literal equilibrium. Some spatial
changes are easier to adjust to than others - for the first couple days I just need to go
sit down, and let my body reorganize, and then my body learns the new
info.
I have to think about providing food for an additional
person. This is relevant for our grocery
shopping, meal preparation, and generally making sure meals - snacks, lunch,
etc. - are taken care of. I'm used to
thinking about food for myself, Ron and the girls, and am definitely not a
gourmet cook. Thinking about another
person, whose likes (or dislikes) I don't know well, is an additional layer of
processing. I am finding ways to manage,
but it's tiring.
Planning our schedule is more complicated. There's all the usual stuff for our
family. In addition, we're trying to
give Lovely a feel for what it's like to live in America. This includes (but isn't limited to)
non-tourist outings such as a Passover Seder at my parents house, and shopping
at local stores for items we need. My
daughters, with my help, want to give Lovely varied experiences.
All of this is very positive for my girls, as well as for Lovely, but it
takes a lot of thought. I'm not involved in all of the outings - in fact, only a couple - but the planning
and coming and going of everyone is giving a very different feel to the rhythm
of my day. I get to the point that
thinking about one more thing - whatever that thing may be - is somewhat
overwhelming.
And of course, there's the language. I used to speak French, but since I don't use
it, I'm not nearly as fluent as I once was, and the goal is for her to improve
her English. She really wants to
practice her English, but it's VERY different to communicate with someone who
isn't fluent in English. So I find
myself - and I'm sure this is true for Ron, Leena and Cara as well - really
thinking about how I say things. I want
to keep communication clear and simple, and that's surprisingly hard work!
My nervous system knows certain routines, and when things
are less predictable, especially in my own home, it's a lot to process. My own routines are impacted. Again, it doesn't need to be a major difference...
my nervous system is sensitive, so even thinking about wake up routines
differently feels off to me. She knows I
have a special diet, and that I rest every day, and has been accepting of some
basic rules. She hasn't questioned
anything, and has been friendly, polite and appreciative. But it feels different to me to have her in
the house. I find myself feeling a bit exposed, self-conscious about my
disorders. Despite what I write about,
it's hard to actually LIVE some of what I've thought about. But I realize that based on what she's done
with me, she probably has little sense or understanding of what my limitations
are, and my disorders really are invisible to her.
I'm more relaxed than the day she arrived - I think we
ALL are - but I still am keenly aware that my home environment and routines
don't have the element of predictability
that I normally rely on to help me navigate.
My basic strategy right now is to be careful about taking breaks, remind
myself to breathe, and try not to overextend myself. For example, being on the
computer is visually challenging, so I'm trying to be careful to pay attention
to my body when I need to stop for a while.
I'm giving even more thought than I usually would to how I structure my
day, trying to figure things out.
Considering what I do and don't have control over.
I'm trying to be mindful of the fact that my home
environment and routines require more effort, and give myself credit for
everything I'm doing to cope. I also
want to let myself acknowledge that I'm doing all of these challenges, and
enjoy seeing my daughters having such a positive experience with Lovely. I remind myself that challenges, and rehab, are
always a balancing act. I remind myself
to breathe, and to try to live in the moment and find some enjoyment in the
whole thing, rather than ONLY focusing on all the extra effort. I think we'll all be sad when the experience
is over. Admittedly, I'll be relieved
because constantly putting out this extra effort is draining, but I also think
I'll be glad that I did it.
