September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

April 15th 2015 A house guest; how it challenges me

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.


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