Chronically Inspired Conversation

I am in the process of moving my articles from my blog Chronically Inspired to here — at least the ones that still seem relevant.  This was one of the first posts I did  back in September of 2010.  I could backdate them, but I decided just to go through the site and re-post, so for the next few weeks I may seem profoundly prolific.  I had two blogs, Chronically Inspired and Joy Corcoran Studio.  Now I have just this one and they must converge.

I sent out some information on this Chronically Inspired concept on my Facebook page and got into a very interesting dialogue with a friend. I wanted to share part of it here. She is very insightful and helps me develop my thoughts, as well as gives me a wealth of links on art work and music. I hope that readers of this blog will feel free to post comments on their challenges and the ways they have risen above them.

She wrote: “My understanding is that Portland is an advanced city in its approach to accessibility and public transportation, so I hope this will help attract an audience. Even if the return on your investment is small, please never discount that little investment. I found that lots of people look and enjoy but don’t comment….But to the site, there wasn’t enough info for me to evaluate specifically with managing chronic pain or even fatigue…outside of generalities with journaling and the like. I think those are great tools, but people have to be in a mind-set that’s open to that in the first place. Please look at this link to the laughter guru I think it’s important.”

I wrote: “I actually just got through reading that article this week-end! I love it and plan to guide people to such things in the workshop. There are active laughter yoga groups here. I just watch funny movies or read funny books. Since I just started the blog, I know there’s a dearth of real information outside the generalities of announcing the class. As I put it together, I’ll add more detail. I sometimes feel I don’t want to add too much so people will come to the class, but then I want to share everything with everyone.
“Portland is much more accessible than a lot of cities. People in the suburbs still have problems, but all the bus, trolley and trains are completely accessible. There aren’t curb cuts at every corner, but we’re working on it. A lot of the buildings are on hills and have steep stairs and are totally inaccessible both for wheelchair users and other mobility limited people. The room they do most of the art workshops in isn’t really accessible, so I insisted  got one on the lower floor.  If it’s not accessible, what’s the point?”

She: “Your best sentence? If it’s not accessible, what’s the point? I can tell you how we’ve tried to rise above limitations, but it’s from here on the East Coast and frankly, it hasn’t gone all that well, but I do have some stories. Mainly I’ve ALWAYS explored accessible outdoors trails and the like: fishing areas, etc. As you likely know, the mind erects the greatest barriers. Still, reality is that physical barriers exist aplenty too. :(“

Me: “I don’t think rising above limitations is the same thing as escaping them. We can’t. We can’t eliminate pain; we can’t regenerate lost nervous systems. It’s normal to feel trapped by both our bodies and our physical barriers. I just know that after accepting them, I have always tried to make sure I live them to the fullest. And the fact that I can’t do everything I want, or go wherever I want whenever I want, keeps me from running around using up energy on things that don’t really feed my soul. The days when I’m incapacitated by pain or fatigue, or when I can’t get to an event because I’m too exhausted and the bus won’t be available for the trip home, I make it a point to at least read something special or listen to something wonderful, and give my heart a bit of positive experience, sometimes more profound than what I missed by staying within my limits.
“I’ve also developed a ‘pain place’ — I don’t know what to call it yet because pain place doesn’t sound very pleasant. I sometimes am hurting and it’s a long time before my next pain med, usually the middle of the night, I can’t sleep. I used to just be angry and frustrated about it (still am a little bit). I’ve risen above it because I’ve stashed some soft blankets and pillows, a favorite book, a favorite CD and movie, a few toys, a sketch book/diary and a very small amount of gourmet chocolate in this one corner of my living room.
“I can only go there when I’m in major pain or severely depressed. It works very well in shifting my mood from anger to acceptance, and then I can occupy my conscious mind with things I love (letters from my kids or mom are there, too) and the pain has to take a back seat. It’s a wonderful way to deal with it that feeds the creativity bank, releases endorphins and passes the time in a more creative state that just pain and anger.
“Sorry for the long post but I’m have a “popcorn mind” day and lots of ideas are jumping around. “

She: “Joy, you’ve learned well how to handle a lot of… obstacles (sounds as though you had a lot of hard early training that you were going to be the one to soothe yourself and provide your own solutions.) To substitute immensely pleasurable and expanding activities when you can’t physically manage to “get” somewhere is smart: diversion, distraction, not giving into frustration and bitterness about life “not being fair”……AND self comfort. The “pain place” is also brilliant. I see what you mean about the name, but not sure if it matters if it doesn’t sound “pleasant.”
“I come to this discussion from vastly different places than you do. I can’t be exactly in your shoes, or in anyone else’s with a disability. My husband is the one with physical and mental disabilities, so I see it through the prism of a wife, first, and, due to the extent of his challenges, as a caregiver. My other perspective is professional: was a nurse, and later got a masters degree in Social Work (with a concentration in health, aging and disabilities.)
“So, I try to help my husband manage his advancing disabilities by being realistic about what he can do himself, respecting his desire for autonomy and independence, yet balancing that with what makes sense for him to try or not: is he going to hurt himself, and frankly, what kind of a bad spot am I going to find MYSELF in getting him out of trouble when he uses poor judgment in forging ahead when it just doesn’t make any sense. (This is extremely common.)
“Sorry, guess I’m having a bit of a “popcorn mind” myself this afternoon! (That is just the BEST phrase!)”

The conversation opened my eyes a bit more to the thoughtfulness of caregivers. Physical and mental disabilities impact the whole family. My friend exhibits some of the best aspects of being Chronically Inspired. She takes beautiful nature photographs, seeks out places she and her husband can enjoy, and is always kind and thoughtful to her friends. She has raised wonderful children and helps care for her parents. She has been hand in hand with her husband as his condition (Multiple Sclerosis) has changed both of their lives. Their world has narrowed, the things they can do are limited, there’s no getting around that. But she is rising above it in so many positive ways that it’s inspirational to me. And that’s the difference I hope to show on this website and in my workshops. Not to focus so much on the paths that aren’t accessible, but pay close attention to the path you are on and the beauty growing around you and within you.

And how, on those wonderful days when you have “popcorn mind,” to capture all the exploding tasty ideas that will nourish you when you’re too pooped to pop.

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