THAT GIRL KEEPS FALLING ON HER BUTT

fall-down-stairs.jpgMy balance, isn’t.

So when I head straight toward the bushes at the entrance to my building it isn’t surprising.

Bushes are a trigger in picturing my first (and only) experience as a new MSer in an MS support group.   Recommended by my neurologist, the group experience was meant to help me cope with the way-past-due-diagnosis of my disease.

Instead, it freaked me out.

Walkers, wheelchairs, canes, crutches – and me, invisibly disabled, in high heels looking at a future unable to wear them.

Big time downer.

Especially when a guy lost his balance and landed on his butt in a bush. That he laughed it off was horrifying.

I understand, now, the reason he laughed.  Not only is laughing at the faux pas around the commonplace common, but situations that elicit that kind of response are also all too common.

The reality he must’ve experienced then is one I now share.  Today I laugh, too.  Because it’s truly comical at times and also because laughter is socially reassuring.  “It’s alright, folks.  I’m alright.  Nothing to see here, move along.”

Knock wood, I’ve yet to experience anything dire in my navigational mistakes.  Embarrassment to be impaired in public is what hurts. Most of us don’t know what to do in a situation like that.  I put lots of effort into looking unimpaired, but when I catch sight of myself in a shop mirror, the reality of how I walk, for example, isn’t normal at all. 

When I use an assistive device, a rollator in my case, parents scold their children for staring.  I’ve yet to hear mommy or daddy use the opportunity as a teaching moment to talk about disability; rather it’s “don’t stare” before hurrying away.  No wonder society hasn’t made much progress in accepting the disabled community who, except to children, remain largely invisible.

Recently, Disability.gov blogged an article about steps to take when being newly disabled.

It’s worth a read, especially if you’re not.

Specializing in couples work, Kathe Skinner is a Colorado Marriage & Family Therapist and Relationship Specialist.  She works especially those couples where invisible disability is present.   For over 10 years, she and husband, David, have been Certified Instructors for Interpersonal Communication Programs .  Find the schedule for their next Couple Communication Workshop at http://www.beingheardnow.com© 2014 Being Heard

READ IN 92 COUNTRIES!

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

A San Francisco cable car holds 60 people. This blog was viewed about 3,500 times in 2013. If it were a cable car, it would take about 58 trips to carry that many people.

Wowee zowie!

There’s still a long way to go in making people aware of invisible disabilities.  And that so many of us experience them.

Of course, ILIKEBEINGSICKANDDISABLED is about much more than invisible disability.  That’s as it should be because our lives are so much more than how we feel or what chronicity label we carry.

If you read my blog because of my sly humor or because something has touched you , made you laugh or think or angry, I’m happy for that.  I challenge you to share with someone you know who might appreciate something I’ve said.  Oh…and please let me know what you think about something I think.

Thank you, readers, for putting on a smile on the face of the last day of 2013.

Click here to see the complete report.

Kathe Skinner is a Marriage & Family Therapist and Relationship Coach in private practice.  Diagnosed with multiple sclerosis for over 35 years she’s like many who experience invisible illness — most of what happens in her life is not directly attributable to being disabled.  With her long-suffering husband (that doesn’t have anything to do with illness, either), they’ve been married almost 28 years, sharing their Colorado home with two resourceful hooligan cats, Petey and Lucy.   Read more about the Skinners at http://www.beingheardnow.com

© 2013 Being Heard, LLC

WOMEN’S LIB IS A LIE

Speaking from a disabled woman’s point of view, living the “lib lie” in relationship simply doesn’t work.

The “lib lie” I’m talking about is putting career before relationship, being damned if I’ll make cacciatore, or being complimented for how I look.

Where was my head all these years.  I’ll tell you where: in the conference room, the kitchen, and in front of the mirror.

Truth be told, I like making cacciatore — and being appreciated for it.  The same as anybody would, including guysfishy.  Liberation doesn’t stop at individual freedom; its true worth is in how liberated our partnership is.  Oh, stop — I’m not talking about three ways.  See, if one partner realizes cultural or family baggage enough to detach a bit from it and the other partner is clueless, the relationship’s pretty lopsided.  But hey, some partners like their partners a tad underdone.

Clueless for real or clueless pretended, either path leads right back to a problem that’s repeated itself for generations.

Sherod Miller, co-founder of Interpersonal Communication Programs, defines a healthy relationship as the collaboration of two strong people “bridging” to each other across a committed lifetime.  Paula Derrow, writing in The New York TImes, calls it “leaning in together”.  Writing recently about her marriage in The New York Times, Paula describes a marriage right out of Home Depot.

A do-it-yourselfer, her marriage to another do-it-yourselfer spanned two states.   Their finances were separate, and so was ownership of their separate homes.  Except for weekends, each lived a separate life.

Talk about distancing.

When Paula was laid off from her job as a writer, she had reason to need her husband in very real ways, one assumes for the first time. Lying awake, the writer struggled with questions about her independence, whether she could afford to continue living separately, and whether her husband was encouraging and supportive only as a way to get her to come live with him and cook up a cacciatore.

I won’t say where Paula Derrow’s head was, but to come to the realization that her marriage was about the two of them together, not separately, is, to put it charitably, wrong-thinking.

More than most, those of us with disabilities, invisible or not, have had to come to terms with the lie that we can make it on our own.

The poor state of the world economy has left millions out of work, stressing personal worth and identity.   With so many jobless, you’d think social perception about being unemployed would’ve changed; it hasn’t.  Role expectations die hard.

Changes in the social order are happening all around us; role-turbulence is no longer reserved for the disabled or marginalized others.

These days, anyone can become marginalized.

Relationship’s great test is how to be together without losing oneself; how to get from one place to another while travelling together.

Kathe Skinner is a Marriage & Family Therapist and Relationship Coach specializing in work with couples whose relationship is affected by invisible disability.  Like most of her generation, she has been powerfully affected by the Women’s Movement of the 1960s and 1970s and has had trouble integrating that independence with the sometimes-limitations of multiple sclerosis.   She and her husband David live in Colorado where they teach couples to collobate their way to happier relationships.  Read more about she and David’s Communication Workshops at http://www.BeingHeardNow.com.

THE DISABLED EMPEROR’S NEW CLOTHES

Lots of us with disabilities, hidden or not, feel as if we’re a burden.  Needing assistance with basic tasks, like getting from one place to the other, feels like a loss of independence.  Depending on our experience with that quality, a loss like that can be emotionally upsetting.  Thus, we want and need to believe that relationships are unaffected.

In the story of the Emperor’s New Clothes, swindlers were able to part a vain monarch from his money by appealing to his sense of entitlement.  Only the very smart, the very gifted were able to see his new clothes.  There weren’t any new clothes, but no one would say there weren’t for fear they would appear stupid.emperor

Our partners and families are like the Emperor’s subjects.   Secrets emanate from anywhere in the family system, usually set in motion as a way of controlling the environment and the people in it.  Control like that often comes from feeling out of control; in other words, denial of something being wrong sends the message that, like the Emperor without any clothes, the subject is closed.

Imagine if no one had spoken up.  Life would’ve gone along, albeit uncomfortably.  After all, only a blindfold man could be comfortable in the regent’s presence.    The Emperor may have become isolated as others began to avoid him.  But it would only be a matter of time before someone from outside the kingdom was presented at court.

Pretending has its costs.  Not just for the Emperor (who had to have been hugely embarrassed when that little honest kid called him out) but for the townsfolk who went along with the lie.  Pity the poor traveler, too.   There are always good reasons we can cite for living a lie, or for allowing others to live one.  Call an Emperor naked and you spend your time knitting in The Tower.  Or worse.

Feel sorry mostly for the Emperor.  Another word for entitled can be delusional.  When one of us wants to keep secrets about one side of a relationship, no relationship really exists.  Thus, the Emperor was alone although he didn’t even know it.  None of his relationships were truthful even as everyone in the relationship knew the truth.  Living as if is the same as living a lie.

Everyone colluded in living dishonestly.

There’s a problem, of course.  Feelings denied become corrosive; not just to the person swallowing them, but to everyone, especially an intimate partner.  It takes lots and lots of energy to act “as if”; there’s always the chance of a slip-up.  Maintaining a lie means additional lying and the exhausting need to remember the story.

Hard to put yourself in the Emperor’s place.  He could’ve learned his lesson about separateness, about being entitled by disability to keep thoughts and feeling secret.  Being outed may have made him a better man; more honest and willing to take part.  Or it could’ve embittered him further; providing justification for putting lots and lots of people in The Tower.   I choose the ending to this fairy tale.

The Emperor let go of pretense and chose honesty instead.

The Emperor looked for corrosiveness and sought to right it.

Intimacy took the place of separation, and destructive secrecy was banished forever.

Honesty was restored to the Kingdom, and that no punishment befell anyone who spoke up.

Vulnerability was again valued.

And that’s how  everyone lived happily ever after.

k-cropped-4x6Kathe Skinner is a Relationship Coach, Certified Relationship Expert and Marriage & Family Therapist in Colorado where she conducts communication workshops for couples, pre-married’s, the invisibly disabled, and the over 50 crowd.  Kathe enjoys collaborating with other professionals in order to reach more relationships affected by hidden disability.  She sits on the Executive Board of the Invisible Disabilities Association, is a regular contributor to Disability.gov., and is an ardent-and-natural-teacher-without-a-classroom.  She has been diagnosed with multiple sclerosis for over 30 years.  More about Kathe at www.BeingHeardNow.com.

LOVE ME, LOVE MY CHAIR

Rachel1A couple of weeks ago I introduced Rachelle Friedman to those of you who don’t know her.   If you recall, she became wheelchair-bound due to a freak accident at her bachelorette party.  I promised to tell you more…

Not to be cheesy, but Rachelle and her husband, Chris, are nothing short of inspiring.  They never chose to be in the spotlight, but they are.  Their lives together have a level of transparency they’d never planned, where privacy doesn’t look anything like it used to.

The very act of being married is a prime example.

He stayed with her?  Actually married her?  No shit!  Uh, what about sex?  They don’t “do it”, do they?

The answers are all “yes”.

Much is made of Chris’ staying with her.  It’s not just that she had an accident, ended up in a wheelchair, and except for that everything else stayed the same.  Rehab was long and painful.  With paralysis, her body changed and she’s plagued by low blood pressure, which makes activity dicey.  And even though she can’t move her legs, nerve pain still exists — something medication doesn’t completely take away.  So why does Chris stay?  “The extra hardships don’t outweigh his love,” Rachelle will tell you.  It’s not that he “stayed with a girl in a chair that makes him great.  It’s that he’s loving and giving no matter what.”

I hope people are inspired by our love, not because of my disability.   – Rachelle Friedman  rachelle2

Rachelle doesn’t understand the fuss that’s made of her everyday life, either.  “Just because I wake up in the morning, eat breakfast, work out every now and then and play sports with a disability…does not make me inspiring.”

One of the biggest changes has been in Rachelle’s career path, and the corresponding change in life plans because of it.  She can no longer teach aerobics, nor can she be a reliable 9-5 employee.  This young woman likes to inspire and also to educate.  She is registered with a speaker’s bureau and has been doing some cool speaking gigs.  If money was not a roadblock, wants to be a coach, helping other people.  With the loss of that second income, the couple struggles financially.

You could call her the Queen of Lemonade, but I think there’s more to Rachelle than that.  I’m sure there are moments…   But she is blessed with talent, beauty, and drive, so Rachelle would be a winner no matter what.  That she has a wheelchair in the way, well, that’s just a lotta lemons.

Visit Rachelle at www.facebook.com/rachelleandchris and on Twitter at @followrachelle.  Watch for her book next year!

Kathe Skinner is a Relationship Coach, Certified Relationship Expert and Marriage & Family Therapist in Colorado where she conducts communication workshops for couples, pre-married’s, the invisibly disabled, and the over 50 crowd.  Kathe enjoys collaborating with KatheSkinner marriage & family therapistother professionals in order to reach more relationships affected by hidden disability.  She sits on the Executive Board of the Invisible Disabilities Association, is a regular contributor to Disability.gov., and is an ardent-and-natural-teacher-without-a-classroom.  She has been diagnosed with multiple sclerosis for over 30 years.  More about Kathe at www.BeingHeardNow.com.

“If you have multiple sclerosis, you’re treated with respect.”

The following assertion was made by Maxine Cunningham, founder and director of Empowered Walking Enterprise/Ministries.  My response follows.
“Dignity is not a word that we often hear in connection with how we treat persons with a chronic mental illness – YES if you have cancer, ALS, multiple sclerosis, etc. Dignity and full personhood – that we might be whole.”

As a therapist with multiple sclerosis, and a Board member of the Invisible Disabilities Association, I can assure you that those with physical illnesses, esp hidden ones like cancer, ms, lupus, Crohn’s diseaes, fibromyalgia, anxiety, depression, etc., are not always treated with dignity.  There are still people who will not hug someone with cancer for fear of “catching it”.  An ms client was escorted from a grocery store after she fell into a display; the assumption was she was drunk, not that she fell because of balance problems.  Read about my own experiences with people’s assumptions, misperceptions, and misunderstandings on my blog, ilikebeingsickanddisabled.com. and in my article for the government’s site, disability.gov, http://usodep.blogs.govdelivery.com/2012/07/25/looks-can-be-deceiving/.   Mental health issues are as much a part of invisible disability as physical health issues are.  Parsing them dilutes the effectiveness of advocacy.  Without ignoring the special needs of any group under the umbrella of “disabiltiy”, it might, at some point, be worthwhile to give up the “me” in exchange for the “us”.

Kathe Skinner is a Relationship Coach specializing in coaching couples whose relationship is impacted by invisible disability.  She lives in the Front Range of Colorado with her husband of 26 years, David, and their 2 hooligan cats, Petey & Lucy.
© 2012, Kathe Skinner