THE JURY’S OUT.

I’m a fine one to talk.

“All change implies the acceptance of loss” is the line I berate my coaching and psychotherapy clients with.

Loss of function with invisible disability carries with it more than just the loss of “being able to…”  It’s how others’ attitudes might change.  Or how communication in bad hair daya relationship — married or not — is impacted.

Recently emailing with a colleague, another permutation appeared:  “All loss implies the acceptance of change.”

These days, for me, that applies even more.

Kathe Skinner is a psychotherapist and relationship coach living and working on Colorado’s Front Range.  She has been courting acceptance of the changes in her life for most of this year.  The results aren’t in.

LOVING

Love at its most true is not afraid to be hard. ~ Whitley Streiber

Love at its most true is not afraid to be hard. ~ Whitley Streiber

Married, in a relationship, or single, life is often ungovernable.

Through disability, chronic illness, divorce, break-up, deaths big and small where do we find respite from difficulty?

When can we stop being courageous?

So many of us lean on love to give us relief from life’s chattering.

If love were so one-dimensional, though, if all loving did was give us rest, would it still be lustrous?

What is easy, quantifiable, predictable soon loses our interest.

Whitley Streiber put it beautifully, “Love at its most true is not afraid to be hard.”  I agree (even if he is talking about aliens.)

Kathe Skinner is a psychotherapist and relationship coach, specializing in working with couples whose relationship is impacted by invisible disability and chronic illness.  Married to David for over 26 years, they live with kitties Petey and Lucy in the Front Range of Colorado.  Are there aliens cruising the skies over her home?  She thinks the logic is irrefutable.

BEING INTENTIONAL: HOW DID I GET HERE?

erasing brainThe autopilot in us keeps us so far from making choices that our lives go by like getting to work — can’t even remember how we got there.

I tell myself that if life wasn’t so full and whirling I’d be more of a participant instead of bystanding   But getting in “the flow” isn’t singular and it isn’t the same for each of us.  While I suspect that lots of us get caught in a fast flow, I don’t know how many of us feel overwhelmed by it.  Nor do I know how many of us realize how many different “flows” are there for us.

For me, with the cognitive sequelae of multiple sclerosis (and for other people whose chronic illness or hidden disability does the same to them — chemo brain comes to mind) what I remember and what I miss, is the ability to click it out, project after project, day after day, for years.  I stayed on top of things, moved and shook my world.   And I felt I created my world, all I was really doing was joining someone else’s flow.  Nevertheless, by America’s professional and monetary standards I counted myself a success.

Today, I fail to take into account how much life has changed in the years since I moved and shook my world.  Looking back, technology hasn’t been my friend.  Today I’m outsmarted by phones and made (too) aware of bad hair days because of someone’s visual access to me.  Moreover, being lost in the internet is akin to being down the rabbit hole, where time is immaterial or at least irrespective of my reality.

Like a merry-go-round that some bigger kid has pushes faster and faster, I’m dizzy from the motion and tired from hanging on so tight.

Not meaning to be dramatic or negative, let me be both:  if I was somebody else biting into the pickle I’m in, I’d spit it out.

So what does this have to do with being intentional?  Simple.  We don’t have to stuff the whole pickle into our mouths at once.  Nor do we have to eat the whole thing.  Part of the lack of intentionality is being black or white, all or nothing, impulsive.  Choice is instinctively exercised by most (all?) organisms as a way of preservation.  That my cat won’t approach the blow-dryer unless she first makes sure it’s dead and can’t hurt her is demonstration of intentionality.   How odd, then, that multiple times a day the hair dryer beats up the most evolved organism on the planet.

Turning on the computer doesn’t mean I’ll sit in front of it for 12 hours; I make that choice.   Choosing how to live those quickening days needs to be as intentional as that.   Thought-full, not automatic.   Damnable that choosing to get out of the fast flow is so difficult to do.

Ultimately, that final final choice isn’t one we’re allowed to make.

k-cropped-4x6Kathe Skinner is a Relationship Coach, Certified Relationship Specialist whose professional strength is working with couples affected by hidden, or invisible, disability 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.Kathe Skinner is a Marriage & Family therapist, and Relationship Coach. Suddenly, she finds herself in the midst of a confluence of “flows”

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.

PISTORIUS GUILTY OF MURDER? SAY IT ISN’T SO.

While apartheid has been legally abandoned in South Africa, it can still be a racially uneasy place.  But some questions cut across racial lines:  Is Oscar Pistorius guilty of murder?

It was a made-for-television story starring Oscar Pistorius, a double amputee running on bladed “legs” in last summer’s Olympic Games, and his girlfriend, Reeva Steenkamp, a beautiful model.  Life in a luxurious gated community.  Fame, wanted or not, right up there with South Africa’s idolized soccer players, Bafana Bafana (The Boys).

Think about it – a man who by anyone’s definition is disabled participating in the Olympics, traditionally a place where only legends Pistorius blade runner
belong:  the fastest and most durable; the strongest; people who soar highest and go furthest; who combine talent with heart and passion.  Athletes with demonstrated ability to endure and transcend pain and to remain focused despite it.

Unique in the world, Olympians are the best of the nations that send them.  World-class.  And Oscar Pistorius belonged.

Even so, efforts were made five years ago to ban him from competing with the big boys because, get this, his so-called “cheetah legs” gave him an unfair advantage.

Funny that able-bodied runners would be threatened by the introduction into their midst of someone with no legs.  You can’t make this stuff up.  Legs that were replaced not by bionic ones, but by artificial ones.  Oscar didn’t flip a switch and go smokin’ down the track like some crazed stock car.  He never cruised into first place.  His swiftness wasn’t accounted for by Mercury-like wings affixed to his artificial feet.  Like every other athlete, he earned the right to run.

On Valentine’s Day, Oscar Pistorius is said to have murdered Reeva Steenkamp.

For me, the Pistorius story is especially tragic.

I’d probably win in Vegas betting that Oscar Pistorius never intended to be a symbol for many who are disabled.  But he was.

It was 2012, mid-summer in London, and the media couldn’t ignore the runner’s Cinderella story.  In the final heat, Pistorius ran the 400 meter against record-holder Kirani James.  Their exchange of name bibs and embrace at the end of the race was moving; it spoke of mutual respect and the honor James felt to share the track with such a determined, worthy, and ground-breaking opponent.  I’d like to think it was James’s way of giving Pistorius the keys to the clubhouse, heretofore for the able-bodied only.  Irony of ironies, James is black; Pistorius is white.

Despite this Olympic nod, the Paralympics, which followed, were not televised (not that I could find, anyway.)

Never meaning to, Pistorius put disability smack dab in the faces of people watching at home.  There’s always been an element of able-bodied gawking at the disabled; a “somewhere else but not in my neighborhood” flavor.  The South African athlete brought it home to their neighborhoods, taking it out of the invisible realm of the Paralympics to the center stage of London in the summer of 2012.

Pistorius generated pride when he won and even when he lost, and the tears that often accompany such moments.  He was a winner in a world that often deems the disabled losers.

Pistorius bore a dignity in doing his job and doing it exquisitely.

Pistorius was modest in his remarkable accomplishments.stamp, portugal, paralympic, disabled athletes, runner, disabled

Pistorius never sought the limelight; he wasn’t boastful or militant.

And maybe that’s why the emotion Pistorius generated for me, as a disabled woman working with others who are disabled, was so great.  His victory was not for any cause, although I wanted it to be.  I wanted his courage to be the stuff of film, like the young Patty Duke (herself disabled with bi-polar disorder) as Helen Keller in “The Miracle Worker”.  Or Tommy, the pinball wizard of Pete Townshend’s rock opera.  Of politics, like President Franklin Roosevelt or U.S. Senator Max Cleland.

Heroism is rarely sought by heroes.  We make heroes because we need them to lift us from our realities.  Heroes overcome where we haven’t been able to.  They’re the youngsters still alive in our fantasies, reading comics and surmounting unfairness with a dexterity we only dream about.  I struggle as I weigh my need to flout Pistorius’s achievements as a disabled man competing in the regular world, with how I feel about the murder accusation he faces.

I’ve decided to let it rest.  The fact will always remain that Oscar Pistorius was the first double-amputee to win a gold medal in the arena of able-bodied world track.

For me, giving that kind of hope stands on its own.

k-cropped-4x6Kathe Skinner is a Relationship Coach, Certified Relationship Expert and Marriage & Family Therapist in Colorado where    she conducts communication workshops for teens and parents, couples, pre-marrieds, 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 or at her blog, ilikebeingsickanddisabled.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