My Life is filled with “ish” things. Sometimes I am definitively YES or NO on an issue, but mostly, I exist in shades of grayish. I love pizza, but NY style not Chicago or worse, cafeteria (blech). I love chicken broth, but it has to be homemade, not from bullion (gross). I love my family and friends, but that doesn’t mean that they don’t royally piss me off at times. Things are not as binary as they appear. In an ever-changing world, we are learning to see sexuality, race, culture, and religion on a similar continuum, with more “ish,” and less dogma. For example, though I am raising my children in the Unitarian Universalist faith, their father was raised in the Jewish faith…sort of. He identifies culturally as a Jew, if not religiously. We celebrate certain Jewish holidays and traditions in our home and with our extended family. We like to joke that we are truly Jew-ish, as opposed to the real Jews in the world.
Disabled-ish. There’s a word that you don’t really hear. Most people would not consider whether or not one is handicapped to be ishy: they would think that one is or isn’t as determined by a doctor. But there is an entire population of us who live in this nebulous area between functional, whole, healthy and debilitated. Sometimes we oscillate month to month, week to week, or even day to day. I realize that it can be very confusing for people to see us going to the gym and working out one day and using a handicapped parking placard the next day. It’s confusing for us too. Learning to recognize and honor our energy limits is one of the hardest parts of being a disabled-ish person.
In my world of EDS, everything I do will either strengthen or ruin me. If I stand with proper posture, I build core muscles that hold my weak spine in place and send strong signals through my nerves, allowing my muscles to work well that day. If I slouch, a hip pops out, vital organs shift causing all kinds of problems, and I get a migraine. During good cycles, which could last weeks or months, you might see me gardening, laughing, dancing, walking my dog, playing with my kids, running errands, helping friends, etc. During flares, which could last a day, or weeks and months, you will see me out and about living my Life – I don’t get to take more than short breaks from my responsibilities. But I walk slower. I clutch the grocery cart for support. I have my TENS unit on. I may even use my handicapped parking pass, because things are really bad inside, and you just can’t read me well enough to know. I will probably still smile at you when I hurt: that moment of human connection might be the only moment in my day when I take my mind off of how bad I feel. But the smile doesn’t reach my eyes.
Lately people are raising awareness about what it’s like to live with an Invisible Illness. What it’s like for me, is sometimes I get really annoyed that my problem is so “invisible” to people, because I feel like I’m being Captain Obvious, if people were to just open their eyes and pay attention. In church this week, my minister preached about how people have a habit of saying “how are you?” and “fine,” but no one really means either one of those things. She asked us to face our neighbor and say “I see you,” and really, really mean it.
As “The Malleable Mom” (the world’s worst superhero), I am blessed with a host of completely useless superpowers: Ultra Sensitivity to light and noise (really only good for cowering under pillows from my nemesis, The Lawn Mower), bendy appendages (but not cool, like Elastigirl. I just get hurt a lot.), heightened sense of smell (great at picking out who has a drinking problem – alcoholics beware.) But the one super power I possess which I have often used for good is the ability to try to really see people. I notice when their smile doesn’t reach their eyes. I see it when they slightly limp. I hear it when they have congestion in their nose or throat. I notice when their voice is tired or deflated. And I have another power: the nerve to ask them about it and the patience to really listen to the answer, or sometimes, the non-answer they are giving me. I even ask follow up questions, if I think they are giving me an “I’m fine” answer. And I miss sometimes. It’s inevitable – I’ve got a lot on my mind these days, and I am only human. That’s what I tell myself when other people miss connecting with me. We all have our private battles we are fighting.
And let’s get real about the “I’m fine” answer: I use it all the time. But that is mostly because I have a pretty good sense of who is asking “how are you” but doesn’t really want to know. I tried to answer people honestly for a while. But after 25-45 seconds, when their eyes would start to glaze over and the tension would mount, I could see they were in way over their head. And lest you think I usually drop a gigantic TMI anvil on people’s head, these were just the people who were asking me how my kids and I were doing, medically. I decided to answer them honestly. So now, “we’re fine,” unless someone like me is crafty enough to probe deeper. (Few people do.)
So here is my $0.02: if there is a disabledish person in your Life, practice your Good Samaritan skills. Ask them how they are. Blow off their first answer. Ask them again, and just listen to whatever comes out. You don’t need to know what to say. That same minister I spoke of visits prison inmates for counseling.* She greeted one prisoner recently: “It’s good to see you!” He said, “Reverend, it’s good to be seen.”
Who are the Invisible people in your Life?
* the program is the Arthur Hansen Prison Ministry Program of the UUCA in Annapolis, MD. It is pretty amazing.