Since TBI and Chronic Illness are invisible, appearances mean more than we think. How we dress, our attitude, and self-esteem make a difference of how people treat you. It seems as though when “appearance” is the only thing you can “control” when everything and in everyway your body worked is unpredictable you resort to doing what you can to feel your best. Read this article on how “appearance can be deceptive” and try to be congruent with feelings.
There are many articles at addandsomuch.com that are helpful to TBI. Take some time to enjoy the articles and leave comments.
**********All material presented on Brain Injury Self Rehabilitation (BISR) is copyright and cannot be, copied, reproduced, or distributed in any way without the express, written consent of Edith E. Flickinger, BSN RN.
The comments to this post add content – don’t miss ’em!
Getting PAST the Visual?
by Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC
A Walking a Mile in Another’s Shoes PostA recent conversation on a TBI article, Laughter is Brain Injury Medicine – Relieved it’s not me … new what? launches a conversation that deserves an exploration here — thus, the article below.
(Regular readers have probably noted that Edie, a TBIadvocate, frequently comments on the articles I put together to help, primarily, a readership that has attentional struggles and challenges. I comment on her blog as well.)
I hope you will take the time to investigate Brain Injury Self Rehabilitation,the blog sustained by the life experiences and research of former nurse Edie Flickinger.
MUCH of the information that she shares about Traumatic Brain Injury is also relevant to the rest of what…
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brokenbrilliant
May 10, 2013 at 4:42 pm
It’s absolutely true about appearances. Probably the most significant investment of my time has been in learning how to present the appearance of having it all together, even when I don’t.
Granted, it doesn’t help me get the help I need, when things are going poorly with me. But at the same time, so many people judge you at first glance, that if I let on that things are not good, then I get treated not-so-great, which is no help at all.
Judging by appearances is an unfortunate fact of life, but it’s something we need to learn to deal with the best way we can.
Just so long as we don’t “buy our cover” 😉
brain injury self rehabilitation (BISR)
May 10, 2013 at 8:42 pm
I gave this a lot of thought, and I’d rather appear Confident and in control because that’s just who I am and I think that’s normal with TBI. We have enough stuff that we can’t control. Who wants to look like Sh*t anyway! I don’t think would help us get treatment or others to understand … the only way that happens is if they’ve been there. Rarely, will healthcare professionals be hired with brain injury … and that’s a disservice to the TBI community. Why don’t they hire experienced TBI individuals in healthcare for educational purposes? Our damaged brains are better than many who supposedly don’t have damaged brains! Take care and stay safe.
brokenbrilliant
May 11, 2013 at 7:13 am
You’re right – looking like sh*t doesn’t help us get treatment or get others to understand. {sigh}
LOL – it’s true – our brains can be a lot better than “normal” folks’… The thing is — and this is where I think tons of healthcare folks don’t get it — it’s not about your ‘innate’ ability that matters, because that is always, always changing. It’s about how you handle things and adapt and grow and accommodate and evolve. That’s something that all of us can do, no matter what the state of our brains, and it’s something that “normal” people can learn a lot about — from us.
I’d like to say it’s their loss, but it’s really everyone’s.
Oh, well. Have a great day anyway.
Madelyn Griffith-Haynie, MCC, SCAC
June 9, 2013 at 3:44 pm
I just found this reblog, Edie — (thanks, btw) — so I am only now reading the comments. (odd, what WordPress tells me about and what it doesn’t — maybe it’s just trying to “appear” functional :-D)
Good points above, both of you.
The biggest misconception about “damaged” brains is that, with only a few exceptions, “broken brains” aren’t like broken crockery (where the only alternative is superglue!)
The brain is a dynamic organ that remaps. You may lose a particular function for a while – and it may *never* work the way it used to, but more than a few of the “work-arounds” turn out to be more valuable than disabling, ultimately. It shakes up “set in stone” procedures and perceptions, which creates new and original ways of looking at life and mind.
There is no analogy that works very well, but it’s more like road construction than almost anything else I can come up with right now. When one road is closed for construction, maybe it will take a day – maybe a year or longer – before you can use that route again. Maybe they’ll close the road forever.
Meanwhile, you find a new route. Maybe it’s even faster, maybe it is slower but more scenic, but eventually we put the new route on “autopilot” and life goes on.
Our problems come when our bosses (assuming that where we’re trying to go in the analogy above is work) insist that we use the old route anyway, or can’t see the value in the new one — or assume we can’t get to work anymore, so they have to replace us.
THEN, if “the highway commission” reopens the old route again, or closes down our new one, we have to “travel” consciously once more – which takes cognitive bandwidth that can’t be used for anything else until our NEW route becomes automatic.
And so it goes. But, and this is overlooked time and time again, that is the human condition. EVEN with the NT crowd, there are always things that “close roads” and force redirections, and that always takes a bit of additional time to assimilate. New technology, new bosses or teammates, downsizing, illness — all force *everyone* to find a new route.
They could learn a lot from how we do it!
~~~~~
Madelyn Griffith-Haynie, CMC, SCAC, MCC
– ADD Coach Training Field founder; ADD Coaching co-founder –
(blogs: ADDandSoMuchMore, ADDerWorld & ethosconsultancynz – dot com)
“It takes a village to transform a world!”
brain injury self rehabilitation (BISR)
June 9, 2013 at 6:13 pm
Madelyn,
Your explanation of “road construction” is the best way to help others understand. I’ve never heard it that way, but certainly this is how it is & what we all go through. I just realized I have a ton of comments I need to go through … oh, “If I only had a brain!” LOL Maybe I need to visit the Wizard for the brain!LOL I’m not sure how I overlooked comments, but somehow I need to pull out the book on organization again! (If I could only find it! … Actually I know where it at!LOL)
I haven’t been avoiding anyone. Life happens. So… my plan is to look things over within next couple days. I can’t wait to get on to reading all you have written as it provides so much education and pleasure. I’m going to revisit ideas on how to avoid distractions so I can continue heading in the right direction. When life happens, distractions are inevitable! Maybe if I didn’t care about people I wouldn’t be distracted … but I’d rather know these distractions are important because I believe,”People Come First”!
What do you do when you feel overwhelmed? Thank you for all you are doing to help others I am still hopeful someday I will be able to get others to help manage the website, but that’s a way off. I’m still trying to figure it out, or maybe I should say I’m re-learning it … but repetition enhances retaining information.
Take care and stay safe,
Edie
Madelyn Griffith-Haynie, MCC, SCAC
June 9, 2013 at 6:22 pm
I am SO with you on the “get others to manage” page – still off in the future for me too, unfortunately.
I also am with you on the “I mean well but I am SO overwhelmed I just can’t get to it all” page.
I’m afraid you want to “do what I say, not what I DO” when overwhelm swamps my boat. 😉
Let’s see: first I freak, then I grovel, then I work far too long and hard than is healthy for me, attempting to play catch up! ::only half kidding::
ANYWAY – no need to *ever* feel like you need to explain to me about those times when you need to “disappear” — I GET IT!
xx,
mgh
Madelyn Griffith-Haynie, MCC, SCAC
June 9, 2013 at 4:32 pm
FYI: I just copied this comment thread to the original article (with links to both of you)
ONE LAST POINT:
I hope it didn’t seem like I was suggesting that everybody needs to walk around in PJs with unwashed hair. 😀 Remember, that client was a stay-at-home new Mom, and the PJs were for her family.
OF COURSE we do our best to look our best – for our own self-esteem if for no other reason! What I was hoping to get everybody thinking about was the extent to which we judge by appearance – and to look at our own “appearances” to attempt to determine what others may be assuming we can do that maybe isn’t exactly what’s so — a nudge to us to communicate our needs better.
If we LOOK like we have it all together, we really can’t blame others for expecting from us what “everybody else” does. Not to say we are defective – but we ARE different, and others may not understand that without a little help from us.
xx,
mgh
brain injury self rehabilitation (BISR)
June 11, 2013 at 9:52 pm
You are right that people have a preconceived idea of another based solely on appearances! Same thing happens consistently in healthcare … but if someone doesn’t have make-up or clean hair or dressed as they perceive the patient should dress then they get a diagnosis as “Depression”. It’s all about “appearances”!
Madelyn Griffith-Haynie, MCC, SCAC
June 11, 2013 at 10:01 pm
Not ALL – but w-a-y too much (and people who “darn well should know better” don’t take the time to look below.
LOL – my (almost white) roots haven’t been done in FAR too long (plumbing problems in my bldg. with s-l-o-w draininage – I’ve always been a brunette, not good for dark dye to sit in a tub or sink of water for hours) – so I have been putting off going back to my psychopharm until I looked more together, lest she think depression is MY problem!! 😉 (almost out of meds, too!)
Of course, if I don’t go, I guess that means agoraphobia, huh?
I think a wig is the answer. NOW – to find the time to look for one of THOSE.
xx,
mgh
brain injury self rehabilitation (BISR)
June 11, 2013 at 10:40 pm
Madelyn, LMAO! Yep it’s either “depression” or “agoraphobia”! Isn’t it sad society is so superficial! Most of us try to do everything to look our best! Here’s a good one: I bought a couple wigs when I had no energy to fix my hair! In retrospect it was while I was being investigated by Bureau of Worker’s Compensation … it probably could have presented as though I were disguising myself! LOL So, “depression”, “agoraphobia”, “guilty”, all labels that are unrealistic and superficial of which none are accurate. I think others just make it “fit” whether it’s true or not. Few look for the answers or truthfulness of situations.
Maybe if we pull out the Wigs and PJs we can fit the ideas others have about “brain dysfunction”. Actually, we can do circles around others in many areas … and maybe that’s the real problem! Too bad we didn’t live closer … we’d be laughing all night with these “Wigs” and “PJS”! I think it’s time for a PJ party for all those who follow … it would just be a “normal” convention for all of us!LOL Take care and stay safe.
Madelyn Griffith-Haynie, MCC, SCAC
June 11, 2013 at 10:51 pm
Disguise, huh? I guess the dx then would be sociopath?
Too bad the breast cancer awareness folks already took the bald head — THAT would be fairly easy to manage, wouldn’t it? I mean, any barber could do it weekly – no muss, no fuss!!!
(hmmmm . . . thinking about it, actually.)
RE: PJ’s & Wigs — I actually organized a PJ party for Peggy & Kate’s birthday one year, but I was one of the FEW in PJ’s Go figure!
MY pjs? Pink and black flannel zebra stripes. Love ’em still, even though they shrank (no really – I’m not bigger – grin – they’re smaller! 😀 )
xx,
mgh
brain injury self rehabilitation (BISR)
June 11, 2013 at 11:03 pm
I love the laughter! Next time I get an invite to dress causal I’m going to ask if they mind “PJs”?
Tell Peggy it’s time for the PJs … and relaxation! I’m sure Kate is looking down and telling you to “Take Care of Yourself” and wear them PJs as often as you can! Depressed, Agoraphobia, Sociopath, Psychopath, and on … it probably will cause someone else to laugh unexpectedly even if it’s at our expense! … We’re tough and laughter is good!
Forget the hair dye … put on one of those “babushkas” (don’t know how to spell, but I think you know what I’m trying to say!). I guess if we never look in a mirror we wouldn’t care!
Just think how accurate the perceptions are of people who are “blind”. Their perceptions are based far beyond superficial appearances! Do they accept people for who they are instead of all the preconceived ideas based upon appearances?
Madelyn Griffith-Haynie, MCC, SCAC
June 11, 2013 at 11:12 pm
So, what you are telling me is to buy a white cane, tap around & stumble a lot?
Then people will think that maybe I can’t SEE that it’s time to do my roots again or that I forgot to change out of my pjs. lololol
xx,
mgh