Lovely is leaving today.
Ron drove Cara and Lovely - with
her luggage - to school this morning.
Lovely and the other students stored it all in a classroom, and will
spend the morning with their respective correspondents. Then we'll say goodbye to Lovely at the high school
after the pizza party lunch. I'll bring
my own food - pizza has all kinds of migraine triggers for me!
I knew that having her as a houseguest - even though she
has not been difficult, and has gotten to be good friends with the girls -
would be a challenge. I wrote about the
challenges in my last post. What I
didn't expect was that she would make me think about what life would be like if
I were healthy.
It's not because *she* is healthy, nor that her older
sister - 25 and living in Paris - is
healthy. It's because her parents
Evelyne and Yves are both healthy. I
also know that I know other families in which the parents are both healthy, but
having someone living with us for two weeks brought it into sharper focus for
me. I believe that it would have been
impossible for me to have a houseguest whose mother is healthy, and not think
at ALL about what a different picture might look like.
Lovely's done some traveling, including going to
China. Lovely and Leena and Cara had a
conversation once about whether or not they like being on planes. Despite turbulence, etc. the conclusion they
agreed on was that planes are good because you can travel to places that are
far away, and that makes it worthwhile. I
know that for many people travel is fairly common, whether by plane or car, but
conversations about travel make me feel very sad. It's painful to think about people I can't
visit, places I can't go. Traveling,
beyond a one hour car ride to my parents - which I'm grateful I can handle - is
not possible for me right now. Of course
travel costs money, but if you're healthy, you can have a paying job. Having some kind of paying job is not an
option for me right now.
It's not just about travel. I find myself wondering what it would be
like, how my life, and our lifestyle would be different if I didn't have my
invisible disorders. It feels a bit like
a fantasy, a sort of day dream, letting myself think about myself completely
healthy. I get wistful, thinking about
being able to do things more easily, and about not having to miss out on doing
things. I know that while I have a hard
time dealing with noise, it's too quiet in the house when everyone has gone to
something, and I am home alone. And I've
come to believe that I may never get used to missing out on stuff, that I will
always feel moments of sadness.
I picture a family, in this case Lovely's - a family in which no one has to think about
management and coping, and all the myriad STUFF I have to think about. I know on some level Ron and the girls are
much more used to having a wife/mother with invisible disorders. And I know that there are many other people
with invisible disorders figuring out all the time how to manage. I also know that many of those people have
families, AND I know that living by myself would be immeasurably more
difficult. I'm really not saying this so
that people will feel sorry for me - it's just a reality I've been thinking
about.
I've also thought about how different it is to live in
Central Europe, in a relatively small
town (Rodez) two hours away from a city - Toulouse in Lovely's case. Leena commented that even though Deerfield
isn't a huge suburb of Chicago, you can go from one community to another so
easily that our community feels bigger than it is. Some differences are just that, differences -
neither good nor bad. But I'm grateful
that we live in a suburb of a large metro area because I wouldn't have the
resources I do - even somewhere else in the States - or it would be much more
difficult for me to have access to what I need.
Hopefully Ron, Leena and Cara appreciate my efforts,
given my invisible disorders. I'm proud
of Leena and Cara in particular for being such good hosts - I know they have a
closer relationship with Lovely than is typical of students with their
correspondent. Even with the challenges, I'll miss Lovely - I know Leena and
Cara will be very sad to say goodbye, and I know that they will all, thanks to
our high tech world, remain connected.
And in the end, I'll be able to say I did it, and I'm proud of myself
for that. I remind myself - again - that
I'm working all the time to make progress.
And that I must, must, MUST use my sadness and frustration as motivation
to keep working. I'm doing my rehab all
the time to be able to do more, and I'm glad I took this challenge. I won't have to look back and wish I had said
"yes, we'll host."
Dear Tamar, "I must, must, MUST use my sadness and frustration as motivation to keep working." So true for all of us dealing with an invisible disease on a daily basis. As parents, and partners, and especially as moms, the hardest mission is creating the appearance of normal, when we feel far from it.
ReplyDeleteHi Judy - thank you for reading and commenting! Interesting phrase - creating the appearance of normal.... honestly I don't think I consciously do that, I think it's more that most people just don't see the subtle clues, or see them but don't know that it's a sign of something else.... like sitting down when others are standing.... interesting to think about that...
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