Wednesday, February 2, 2011

On Alternatives When Disagreeable Bodies Need to Cancel Plans

One thing about being the kind of gimp i am, is that i need to plan in advance and sometimes have to cancel plans. It sucks, all around. i've spent time figuring out how to deal with the reality of that, including how it impacts others. 

My main goals are: to not harsh myself out with guilt or shame or embarrassment, and to remember that it's disappointing for other folks too. But how to do that, to balance that, in a world that constantly says you've got to be able to "gogogo!"?

It's a dilemma!

i go through frustration and other feelings around this to varying degrees, and until more recently, had a lot of angst about it. i don't want to disappoint, but don't want to injure myself, don't want to slowly lose the connection to friends and community that grows the more you hang out. Would folks eventually just stop making plans with me? Would everyone double-book, just in case?

i understand that it can be disappointing and frustrating to make plans that sometimes (or often) don't materialize, and so i want to bear that in mind, and be sensitive to that. i also recognize that my body does what it does, and when it's telling me to slow down, if i don't listen i can be in serious trouble. Like the kind of trouble where i can't get out of bed. As someone who is often able to get out of bed, that shit can be really scary. The kind of trouble where my pain level is so beyond management. The kind that makes it so i can't hang with anyone, let alone go out and sit in a cafe or do crafts or shake my ass.

Part of what has helped me chill out about it is that so many of my friends are also gimps, in hugely various ways, or have other chronic health stuff going on. There have been times i've felt frustration about the ongoing canceled plans, for sure. i needed to acknowledge that to myself, and then check it. 

Maybe some tips?
If you have a friend who cancels plans because of disability stuff, it's ok to be frustrated or sad about that, definitely. i think it's important to be able to talk about it with each other. But there's a real fine line between sharing your feelings and dumping them. As folks with disabilities, we sometimes deal with incredibly disagreeable bodies, bodies that can make us frustrated and pissed off too.The last thing we need is more shame and guilt about that. i'd prefer folks not beat around the bush with me, but be honest about feeling disappointed, and then work together to find alternatives (which is not the same as offering "helpful advice" about how i should be dealing with my body, in case that's not clear!). 

One example: a friend and i had planned a dinner together at her house. On the day, i knew i wouldn't be able to get up her stairs and thought we'd have to reschedule. But instead, she suggested and i agreed to made up a picnic basket and have dinner in the park :) It was such a simple thing, but meant a lot to me, because she worked with me and my body in a way that didn't make it all about what my body couldn't do. She found a way to help us accommodate my needs, while keeping our plans. And it turned out to be heaps of fun :) 

If folks are open to it, come up with other possibilities. There are so many ways to work with the bodies we've got. On days i can't move much, the reality is i'm not really up for many adventures. It means i'm dealing with a heightened level of pain and probably also agitation. Company ain't always the best idea lol. But sometimes it really is the best thing. Work together to figure out what's going to work for your particular situation, and i really believe that frustration, disappointment and loss of a sense of community can decrease, and new adventures can be had for everyone involved.



Teresa said...

It's really important to be open to hearing what people need and trying to make things happen in ways that work for everyone. I love the story of your friend turning your visit into a picnic - it's a great example of making things work.

I think egos can get too involved in how things happen. My friend's mother has to use a scooter and requested that her book club meet at her house, as the other members' residences weren't accessible. Another member said that it was important for her to be able to entertain the group at her house, so my friend's mother has to miss several meetings a year because the rest of the group goes to an inaccessible space every few meetings.

saymo said...

Thanks for posting about this! It's so helpful to have friends who can be flexible with plans. It's also nice when friends can consider pain and anticipate needs in the actual plan making process, like comfy chairs, or soft places to lay down.

I recently travelled to SF to visit some dear friends who also have varying degrees of disabilities. I was extremely anxious to travel and be away from all the tools I have at home to keep me comfy. But I decided it was a positive and safe risk to take.

One of the firsts night I was in town we were all dressed up and ready to go out. Then my pain level spiked and exhaustion from the travel over took my body. I still felt sociable and wanted to hang, just felt like leaving the bed was not an option. So what did we do? We had a bed party! I got to lay down and we all got to laugh, and visit and be in pain together. It was so friendly!

This happened several nights, where we had plans to go out and my body said no way, so we had a bed party! What was so nice is that it was easy to shake off the disappointment of not going out because we really just wanted to be with each other, and it didn't matter what it was we were doing so much. What made it even more awesome that 'pain' was always a part of the equation when deciding what to do, it was a given, expected, normal and NBD. Guilt was pretty much eliminated.

I do realize 'bed party' is not always a solution because, yeah, pain is often a party for one. It was probably easier to socialize because I new all the folks i was with had their own, well established, relationship to pain, which made me feel like it was ok to be in pain around them.

Yay for crip connections!