Reeve Foundation Paralysis Community

Wow...just received an e-mail that was another reality check.  My best friend inviting me to join a group that rotates meeting at members' homes.  I remembered how these groups work - it's a game that I've played once before.  Now I have to think through the logistics of how it works, I am aware that it would be very difficult to do, and even though it would be fun, not worth all of the special arrangements I would have to make.  What a drag to have to go through a mental checklist to determine if it's even possible.  Home accessibility is a huge issue.  Wake-up call regarding things I have previously just taken for granted.  It also reminds me that this evaluation is up to me.  Either my friend invited me so I wouldn't feel left out or she just doesn't get it.  I prefer to think it's the former and I really don't expect others to "get it" and adjust their plans/activities to my needs.  Another learning point for me.  Hmmm....   

I really relate.  Until faced with it myself, I had NO idea how socially isolating a wheelchair can be.  We can't go to anyone's house.  Which means if we want to get together with friends, they have to come here (which means I have to clean like a maniac, which I totally do not have the energy for) or we have to meet up in public somewhere (which is usually a restaurant or somewhere else that involves spending money that we don't have). 

Hey guys, I know I'm a shrink and not really supposed to offer advice but I don't always like doing what I'm supposed to do anyway.
Very few of my friends houses are wheelchair accessible also.  There are a couple whose houses I can get into, but frankly it's a pain in the ass.  Now that I am 60, I guess more will be moving into apartments -- now that's good news and bad news.
So here's what I've been doing for 30 years -- about half the time we do go out.  But the other half people come to me and even when people are coming for the first time, I make it clear upfront that I will need help with everything from set up to cooking to clean up.  I do what I can sometimes, having a nurse set the table or getting take-out food.  But even that just sometimes.
At this point, most of my friends feel right at home here and even my new acquaintances settle in pretty quickly and like the feeling.

All that's well and good, but I still feel frustrated sometimes as I could so much like to help with the preparation and even the cleanup.  Some nights the frustration makes me crazy, and some nights the frustration feels more like sadness or wistfulness.  But that's the nature of a mind.  There I am, being a shrink again.

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Dan Gottlieb Ph.D.
www.DrDanGottlieb.com

Dan,

Thanks.  More questions than answers nowdays.  Reading how others manage life helps me.  This is such new territory for me.  My dad came to visit and go to Atlanta with me last weekend.  I don't know yet how to do this part of life.  I did all of the driving for three days in Atlanta because of how my SUV is set up.  My personal care takes so long sometimes, especially on a trip when I have to figure out how and when I can take care of things.  And I was so tired! 

Dad is awake and on the go at 6AM and talks nonstop from the minute his feet hit the floor.  My daughters were extremely talkative when they were small.  I remember telling them occasionally that "mommy's ears nead a rest" and would help them find a quiet activity.  Can't really do that with an 80 year old man who just lost his wife (my mom) in December and who is hard of hearing.  He's so social that he'd talk to a wall and enjoy himself!!! 

Dad's on a fixed income, so I invited him to stay at my apartment.  I gave him my bed & room to sleep in when we came back from Atlanta because my daughter was pulling all nighters studying for finals.  I slept in her room.  Her bed is so soft and by the time dad went home my back was a mess.  My left foot is still swollen from the trip and not enough sleep.  And I was not consistent with my personal care during his week long visit.

Additionally, my apartment was an absolute mess!  I had two people who were going to help me with it before dad's visit & they both cancelled.  I just can't keep up with everything that I used to and the more behind I get, the more depressed I feel. 

I told dad how bad I felt about the mess, but that it was what it was.  I really did enjoy having him here and that was worth everything else.  There are definitely some lessons for me to learn from this experience for future events!  Most of them are lessons I need to learn about how to care for myself while entertaining visitors.  This is just the tip of the iceburg surrounding social functioning. 

I wish I had more answers about what is "normal" for an independent C5-7 incomplete quad.three years out who is in her late 50s!  Probably the only "norm" is trial by fire!