DROOPY BOWS? NOT AT MY HOUSE!

little girl ironingIt started with doll clothes.

Dad’s hankies.

Pillow cases.

That’s how I learned to iron.

Those were the days when ironing was hot, hard, serious work.  Still damp, starched clothes were rolled tight, then stored in a vegetable-bin-type container in the fridge.  Mom took her role seriously, playing her part in Dad’s job.  She ironed my father’s military uniforms with care and precision for over 25 years.

Boy, did he look sharp.

And when my sister and I went to elementary school, our dresses were starched, the bows in the back ironed, pert, and tied with precision.   There were no droopy bows at our house.

Mom taught me to iron critically and carefully.  Only press velvet inside-out.  Steam woolens, preferably with a press cloth between the iron and the fabric.  Shirts, especially collars and cuffs, called for starch.  The most important message was to never ever leave the house without wearing clean, pressed clothes and polished shoes.  (Shoe care was Dad’s department — even now, I resent that my husband doesn’t make with the shinola.)

My parents were not wealthy nor did they come from wealth; their parents immigrated from Europe over 100 years ago.  Their children, my parents, knew that appearance was the way to fit in.  Growing up a military brat, I learned that, too.

When Mom moved to a care facillity she complained if her slacks weren’t crisply pressed.  “Double tracks” she called it when a new crease ran parallel to the old one.

To this day, I can’t look at a pair of pants I’ve hastily pressed without calling myself out for creating double tracks.

Kathe Skinner is a psychotherapist and relationship coach specializing in work with couples whose relationship is impacted by invisible illness.  She herself has multiple sclerosis.   During a recent move, she filled a large box with ironing that (still) needs to be done.  Her’s and David’s two kitties now treat the ironing board as part of the furniture, which it is.  She would be pleased to hear from you.

WANNA BE HEALTHIER? EAT DINNER TOGETHER AS A FAMILY.

The family that eats together grows healthier together.

The family that eats together grows healthier together.

Overwhelmingly, the percentage of people I see in my psychotherapy practice don’t sit down together as a family at dinnertime. Could this be an indicator of family and personal health and well-being?  In a word, “yes”.

When parental schedules revolve around their children’s, the result is that every weeknight and most weekends are taken up with a child’s activities. Not only doesn’t the family eat together, they may rarely be together at all. Even without the interference of outside activities, many parents automatically model what they’ve experienced. Children may be on their own while both parents are working. At day’s end, adults may be too mentally and physically fried to put a dinner on the table. Everyone is on their own: a bowl of cereal in front of the computer or the t.v.; a salad consumed standing at the kitchen counter; stopping for a burger on the way home. For whatever reason, parents and children go different ways.

The family is split apart.

Dissatisfaction between partners is often de-escalated by focusing on children, on whose shoulders it falls to “save” the family, become the family’s “good” definition. As mini-adults, success where parents have failed has everything revolving around these children.  This is enormous pressure for a child, especially when the family doesn’t know how to cope when a child falls short of expectations.

And so it goes: Children who grow to be self-absorbed and entitled; over-anxious because of innate inabilities that don’t match expectations; parents who don’t spend time together, weakening their relationship and modeling how couplehood looks; spending only “family time” together, thus negating the separate roles of each family member must play.

Perhaps saddest of all, families without knowledge and understanding of who they are in the grand scheme of connection and continuity to their own Family History. As each individual of a family grows, so does the family grow. Family is a separate entity as much as it’s an entity made up of its parts. It’s where we learn who we are and find comfort when that’s hard to figure out. Where we can heal and repair. And where we can learn healthy ways of being “part of”.

Metaphorically and really, health begins here, at the family’s table at dinnertime.

Except for sitting at the dinner table alone until her plate was clean of beans, Kathe Skinner’s memories of dinnertime with family and friends are fond ones.  The experience continues in the homes of Kathe and husband David and their families.  Their two cats, Petey and Lucy, have opted out of people food and don’t join them for meals.  Kathe is a Marriage & Family Therapist and Relationship Coach specializing in couples, especially those experiencing invisible disabilities.

THE GRASSHOPPER & THE ANT: A LOVE STORY

 In the modern age, long past the time Aesop and Burl Ives were telling stories, hybrids thrived.

Different is Better

Different is Better

One such unlikely combination was the grasshopper and the ant.

Now, you would think that being such behavioral opposites their paths would never cross.

You’d be wrong.

Somewhere in the reeds and weeds all the bugs were doing their thing.  Beetles rolled balls of doo-doo around in      circles.  Bees started happy hour before five o’clock while cockroaches didn’t look anyone in the eye.

Ants, on the other hand, saw none of this, nor did they care.  Their journey was always the same:  back and forth back and forth from here to there here to there without looking left or right the whole time.

Don’t wait it’ll be too late don’t wait it’ll be too late,” That was the mantra of the ant.

A world away – in bug terms, actually only a few yards – a grasshopper did grasshopper things.  A traditional dance danced to a traditional song.  A game of Reverse Limbo.   Hopping and leaping hopping and leaping getting the rep of not being in one place too long.  A grasshopper’s boots were never parked under anyone’s bed.

La la la la la la live for today.”   That was the grasshopper’s mantra.

Now, I know a lot, I’m very smart and awfully tuned-in, but, to be honest, I don’t know how the two of them – being so different and all – got together.

But they did.

No longer was it this way or that way right or wrong yes or no.  The grasshopper and ant created an us where before there was only a yours or mine.  No longer just different bugs, the grasshopper and ant created  more:

A view looking down plus a view looking around;

Purpose and play all in one day;

In turns open-minded and single-minded;

Rewards from busy and the permission of intimate;

All that, plus leaving room for each to do their own thing.

Here it is, the end of my story.  I thought long and hard about the best way to finish it.

The truth is that the end is the beginning as much as a beginning is an end in itself.  It’s truly true that an ant by itself and a grasshopper alone is never as juicy as the two together.

Two together is the only way to live happily ever after.

The End (The Beginning, as well.)

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.

IF THE PHRASE FITS, WEAR IT.

Big foot small shoeBut you look so good.  It’s a phrase that follows anyone with a sadness or illness, follows them like a hornet homing in on a sweet target.

Having that phrase as a rallying cry for any special interest group misses a larger point:  no one likes to look like shit, much less be told so.

I’ve worked with plenty of people over the last 16 years and it is not very often that anyone looks as awful as they report feeling.  Does that mean they aren’t depressed or anxious or in pain or sad or sick or whatever?  So why does a depressed woman wear make-up?  Certainly it’s not with the intention of having it run down her face.

A woman with M.S. wrote to me recently and reported that she got really tired of people telling her she looked well when she felt anything but, so she tried an experiment.  For a time, she stopped wearing make-up, didn’t fix her hair or pay much attention to her clothes.  She purposely let the exterior reflect how the interior felt.  The results were mixed:  people were empathetic, but that came at the price of not being taken seriously.  Even worse, she wasn’t proud of herself; she liked looking good and if that meant that others didn’t know her past that, then so be it.  She went back to wearing make-up and looking like she wanted to look, even though the comments about her looking-better-than-she-is expected-to-look continue.

Maybe it’s the whole there-but-for-the-grace thing, like a magic wand that makes bad things like grief or disability disappear.

Could be,  like Jack Nicholson so vehemently put it, people can’t handle the truth.  Who can?  While you may not be able to imagine a life with paralysis, it doesn’t mean that others don’t go on with their lives.  We don’t like to be reminded.

Some of us might feel we’re not up to it; that, in the same situation, we’d fail at looking good .
love saying 5Do we really want someone to tell us we don’t look so good?  Speaking as a woman whose multiple sclerosis doesn’t always show, I can unequivocally give that a fat thumb’s down.  Nobody likes to admit they feel like hell (okay, some people do).  And it isn’t good form to remind others they look that way, either.  For the most part, we’re a society of liars; it’s how we get through our social day.  Doctor greets patient and says, “Hi, John, how ya doin’?”  John says, “Fine.”

It’s true, too, that when we don’t know what to say, we usually say something stupid, even though it’s intended to be uplifting or cheerful.  People are afraid of sadness or illness.

Nobody ought to have a lock on the phrase “But you look so good!”   To claim it is to say that no one else can have an emotional response to it.  It’s not only the disabled who dread hearing those words; it’s any one of us whose appearance belies the truth.

We all have culpability.  For the disabled who are offended by being told “you look so good”, there’s a responsibility to educate others about why the phrase is offensive.  Even more, it’s an exquisite opportunity to educate about disability.  Bring it to a 1-1 level, able to disabled.

After all, I wouldn’t be surprised at how often the non-disabled among us get annoyed by the very same phrase when it’s said to them.

Note:  Some of you are saying I’m ignoring the exclusionary word “but”.  But I’m not.  I’m enough of a re-framer of words to know that sometimes meanings are made where there is none.  I stand by saying that rather than being exclusionary, the use of “but” can be an expression of disbelief, as in “bfut she was here a minute ago.”  Try out this meaning, anyway; you’ll gain a lot of perspective.

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.

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.

HOW CAN PARALYZED BE PRETTY?

Photograph of Rachel and her husband Chris on their wedding day.

Photograph of Rachel and her husband Chris on their wedding day. Photo credit: Martha Manning Photography

I blog for the government’s disability website, Disability.gov   If you haven’t visited, do so; it’s cool, comfy, and inspiring.  At a recent look-see, I plopped into a story about Rachelle Friedman, written by the person who knows her best — herself.

You might remember her story.  Last year, at Rachelle’s bachelorette party, a friend’s playful gesture resulted in a spinal cord injury when Rachelle was pushed into the swimming pool.

The wedding was as sweet as weddings always are; maybe even bittersweet. By necessity, the wedding was delayed until Rachelle was recovered enough physically.  Because of the weight she lost, Rachelle’s wedding dress fit differently.  And the couple’s first dance brought the guests to tears.

At her age, Rachelle has had to face, career-wise, what is usually faced much later in life.  Changing careers is generally a choice, but not for her.   As a Program Coordinator, Rachelle planned and taught classes like line dancing and aerobics to seniors.  She calls herself an “unreliable employee” now, one who can’t be counted on as a 9-5 employee because of low blood pressure and nerve pain.Re-focusing, this young woman looks to doing more speaking.

Unsure of a definite direction, this young woman wants to make a career out of public speaking, maybe relationship coaching (which is how we got acquainted.)  Not surprisingly, judging from her first career choice, Rachelle’s into helping others.   She still wants to be inspiring and educating to others.

What happened to Chris and Rachelle is one of those “out of time” things; being disabled young is like a long prison sentence — no choice but to serve it out.  Besides the emotional disruption, the financial cost been significant, too. Being disabled isn’t cheap, and earning potential all but disappears.

So much of this couple’s future can’t be imagined, and is one that certainly wasn’t planned.  While they don’t yet know it, this couple’s future will be different in another way, too:  the love and compassion they have for each other now will be small in comparison to what it will one day be.

Next time, I talk with Rachelle about  marriage, sex, and the fishbowl of being a disabled hero.

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 k-cropped-4x6communication 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.