The Invisible Wall

We have returned, like conquering heroes, from visiting my family in Rochester for the Thanksgiving weekend.  We finally made it up there, after a 2-year hiatus, the trip went well, and we are all still in one piece (more or less).

I thoroughly enjoyed spending time with my family, but, of course, it was tiring.  I managed better this time than past trips, though, which tells me that I am definitely doing a little better these days (probably due mainly to beta blockers and Immunovir).  I noticed I slept better; usually sleeping away from home is a huge struggle.

I have several different branches of extended family in Rochester, so we had some sort of large social event every day, from Thursday through Saturday, which was like a marathon for me!  A single social event can totally wipe me out.  But we have learned from past mistakes and scheduled in plenty of quiet, down time at my Dad’s house in between.  In the old days, we would schedule three different visits in a single day!  I also went up to bed by about 9 pm every night, and I think that helped, too.

I thoroughly enjoyed spending time with my family, but my illness forms an invisible wall that now keeps me somewhat separate from everyone else.  There are a couple of people who understand how challenging our daily lives are, but most of my family has no idea how profoundly our illnesses affect every moment of our lives.  Of course, I don’t want to talk about our illnesses at social events; that would only make people feel uncomfortable.  It’s just that I am living in a completely different world than everyone else.

It’s not that I am hiding anything on purpose or that they are uncaring.  In fact, all of my family knows about our illnesses and most are kind and compassionate, but, as we all know, it’s just impossible for anyone not living with these illnesses to fully understand how completely they affect every aspect of our lives.  So, even in the midst of talking and laughing with my family members, I still feel somewhat apart from them.

When everyone else is standing around the kitchen (as people tend to do at social gatherings!), I am sitting down, at about the height of their belly buttons.  While others are enjoying beer, wine, and lots of cheesy appetizers, I am sipping ice water and nibbling on plain tortilla chips.  We can’t attend gatherings in the afternoon because I need my nap in order to make it through the rest of the day.  I hated having to sit on the sidelines while the rest of my family played football on Saturday.

More than those physical differences, though, are the differences that come up during conversation.  My cousins were all trading stories about taking their kids to amusement parks, Disney World, water parks, etc.  Those kinds of places are like Kryptonite for someone with CFS!  They began making plans for all of us to meet up at Hershey Park next summer to spend a weekend together (it’s a huge amusement park and water park); I could never manage a single day there and Jamie probably couldn’t right now either.

My best friend from high school has taken up running…not just any running, but marathons!  She’s running 26.2 miles at a time, and I feel awful tonight because I went to the grocery store today.  She also talked about triathlons, how much fun spinning class is, her job, and all the travel and hiking she’s been doing.  Even talking about our kids is tough because Jamie is so far from a normal teen right now.  I love her – she is still my soul sister – but we seem to have little in common anymore.  It just makes me kind of sad, you know?

I don’t want to feel these barriers between me and my loved ones.  I’m used to being a what-you-see-is-what-you-get kind of person, but that’s no longer true.  People look at me and I seem normal and healthy, but I’m not.  I’m missing the emotional closeness that comes from shared experiences.  Maybe this is why I enjoy my book groups so much – discussing books is one thing I can do just like everyone else.

I hope this doesn’t sound whiny.  I didn’t mean to complain because I truly did enjoy our trip and loved seeing my family and my old friend.  I just felt separated from them by this invisible barrier all weekend so that my happy social occasions were slightly marred. 

And then I realized there were people I could talk to who would totally understand…thanks for listening.

P.S. I discussed similar issues with social events five years ago in my post, Living in a World Apart.  I guess things haven't changed very much!