“Our relationships have the power to transform our lives.  This transformation occurs not with the wave of a magic wand, but through the daily accumulation of small acts building to a critical mass that we end up labeling a “life” or a “relationship.”

“Our lives are but an accumulation of moments.  The way we live tomorrow, next week, and next year will be the product of what we are doing right now.  If we are critical and angry toward our partner today or too busy to shae a connecting moment, we are spending the currency of our lives unwisely.

In a conscious relationship we intentionally design actions that move us closer to our goals.

Each day matters, since the whole can never be greater than the sum of its parts.  Appreciation expressed clearly today, or the times spent in idle chatter, is giving weight and definition to your life.

Remember to share an appreciation to your partner today and every day.”

These words are taken directly from their author, Harville Hendrix.  He and his wife are well-known and well-respected writers and lecturers about couples and are media favorites.  Besides, he’s a genuinely nice guy. Harville is the author of the popular Getting the Love You Want.  If you don’t have access to me or to his training workshops, buy his books!

Kathe Skinner is a Relationship Coach who agrees with Hendrixes so much so could be a clone.  She is sad to have come to so many of the same conclusions so late in her life.

Thanks for the image source

 

Each year, for ten years now, we’re forced to remember our nation’s biggest single tragedy in an event that also affected the whole world.

The long roster of victims.

The harrowing piles of rubble.

The families bereft of loved ones.

Now, at the 10-year mark, we’re invited to feel horrified and helpless all over again.

Enough, already.

There is no American alive today who is unaware of what happened on September 11, 2001.  We don’t need reminders of the images; watching them, commercial-free, serves only to return us to helplessness and rage.

It’s ghoulish  It’s fixating.  The story of helplessness and anger reminds me of trauma in my own life; not least are the continuing attacks of multiple sclerosis.  I’m not attempting to reduce the reach of the events of 9/11 just as I’m not trying to elevate the importance to the world of my having multiple sclerosis.

What I’m suggesting is that macrocosm mimics microcosm in its relative importance.

For just as lives all over the world were forever changed that Indian-summer morning, each of us who are disabled can pinpoint those beginning moments of chronicity as a truth that’s changed life forever.   Retraumatizing is unhealthy; it doesn’t allow for healing or for forward motion.  Keeping us thrall to commercial-free re-viewing is being at the end of a long rubber band that inevitably draws us backward while giving the illusion of growth and distance.

This is the way to perpetual sorrow; perpetual anger; perpetual victimhood.

I understand the power and purpose of a “Remembrance Event”; especially one that honors and reinforces the meaning of a national tragedy.  Just as important, I think, is to recast an Event like 9/11, making a shift from impotence to reframe — from digging through rubble to planting and growing trees.

Retraumatizing — reliving — can be therapeutic when it repositions trauma in our minds in order to lessen its effect on life functioning.  But retraumatizing has to have a beginning and ending point in order to be healthy.   It is the order of things to move toward balance.   Most 9/11 wives continued to raise their children, went back to jobs; some even began new intimate relationships.  Just as many of us who are disabled have.

Let’s move away from the images of human beings jumping from eighty stories up and from the stories of cadaver dogs nosing through rubble.

Being alive doesn’t dishonor the dead.  Moving disturbing memories to the backs of our minds doesn’t mean forgetting.

Because nobody will ever forget what happened on 9/11/2001.

Is it inappropriate to liken the trauma of fixating on 9/11 with fixating on disability?

Kathe and David Skinner are both military brats and have a special understanding, because of their fathers’ experiences, of how global tragedy affects individual lives.  They also have first-person knowledge of how the tragedy of disability can affect a marriage.

Hawkeye the dog lays beside the casket of his friend, Navy SEAL Jon Tumlison.  Tumlison was killed last year in Afghanistan when the Chinook helicopter he was riding in was shot down by the Taliban.

Like all who served and died for our country, Tumlison died a hero. He also died a wealthy man.For to have a companion like that says more about the riches of love and loyalty than I could ever write.

“Be by my side.” That’s all we’ve ever wanted.

Kathe Skinner is a Marriage & Family Therapist and Relationship Coach specializing in couples work, especially with those relationships impacted by invisible disability. A significant part of her practice is devoted to active duty military and veterans whose multiple deployments, sometimes leading to PTSD, wreak havoc on relationships.   Both “military brats”, Kathe and David Skinner have had their families’ lives interrupted by their fathers’ absences.  The Skinners and their two Colorado cats live along Colorado’s Front Range where they teach Couple Communication Workshops. Discover more about Kathe Skinner and the Couples Communication Workshops at http://www.BeingHeardNow.com and be sure to check out more of Kathe’s blogs at ilikebeingsickanddisabled.com. ©2014, Being Heard, LLC Image:  Lisa Pembleton/Getty Images

One would think wedding vows are unambiguous.  Straightforward.  No subtext, no exceptions.  Love is love.

Right?

“Not so,” say some men.  “If you get really sick or disabled, I’m outta here.”

A study published in the journal Cancer reported that, of the 515 married patients with serious cancer or multiple sclerosis followed over 5 years, the divorce rate was about the same as among the general population, 11.6%.  The difference was that women were 6 times more likely to be the ones being left.  Women tend to stay when there’s a chronic  condition; men tend to leave.  There are lots of theories about why this happens; one that’s floated is that it isn’t in a man to be a caregiver — it isn’t natural.   There are some assumptions here I don’t know if I buy:

1.  Men leave because they don’t know how to be caregivers.

So ask.  Educate yourself.  Get outside yourself.   We’re as helpless as we choose to be.    There are lots of things we get challenged to figure out.  I just talked with a client who expressed deep pride in her ability to move her computer and printer to another place in the house without waiting for her spouse (who worked 100 miles away)  to reattach all the wires.   She didn’t know how, but she figured it out.  I think about the things I don’t even attempt because David’s The Man and those things are “his job”.  Shame on me if those are things I could do but give away instead.

2.  Men and women have different roles.

In a traditional society, that’s fine.  But in today’s crazy world, the password is “get ‘er done.”  It doesn’t matter who cooks, who makes the most money, who puts the laundry away, who picks up the kids from daycare, and who bathes them at night.  The way to survive craziness is to be adaptable.  The reality isn’t the same reality as it was 50 years ago:  some women are breadwinners while their men are househusbands; more women are in the workforce now as two income families are the norm and not the exception.

3.  Men are uncomfortable with caregiving.

Yeah, so.  It’s true that men aren’t as socially-connected as women.  They don’t turn to others where they can get emotional relief from the rigors of caring for a sick spouse.  They don’t seek help from friends and family with all that overwhelms them:  the kids, the cooking, the cleaning, the family finances, the doctor visits, assisting their partner, the worry and uncertainty besides earning the money to make it all happen.  I empathize, I really do.  Uh, so because a man’s uncomfortable asking for help (or directions) it’s okay not to?  When did that become a rule?  Being on the other end, watching your partner be overwhelmed and being unable to help…that’s a bummer, too.   When David’s doing much more than his part, my heart breaks (‘course when he doesn’t meet my expectations about that, my heart breaks for a different reason.)  Sticking with the before-illness-life-plan fits about as well as my size 8’s do now.

4.  Men can’t learn.

The biggest implication is that men are men and that’s that.  Not in them to be caregivers, so don’t expect help ’cause it’s like asking a possum to herd sheep.  Won’t happen.  I think that the men who leave women who become sick need some serious counseling to unwrap their reasons for running.  And that goes for the women, too, if for no other reason than to avoid making more poor life choices.  That some men leave can be a reflection of the relationship’s health in the first place; there are grocery bags that fall apart the more stuff you put in them.

Most of the men who leave weren’t partner material in the first place — Right On!  The saddest part is that women who are left behind suffer greater depression and experience more profound effects on their illness.  They spend more time in the hospital and less time practicing self-care in general.

Most men do stay.  If you want a demonstration of what commitment in a relationship looks like, here it is.  Those of us whose relationships succeed consider visible or invisible disabilities/chronic illness as another part of their lives together.

It’s all work.  It’s not easy.  It’s being in love.

How does your experience with invisible disability compare with this?

Kathe Skinner is a Relationship Coach, focusing on helping couples whose relationships are impacted by invisible disability/chronic illness. She has multiple sclerosis.  At the time of this writing she and David are soon to celebrate their 25th wedding anniversary.  Like most men married to chronically ill wives, he has to remain aware of himself in the relationship and in order to combine it with her.

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   Image: TheDogTrainingSecret.com

Riding my 3-wheeler on a Sunday morning bike ride with David, we pedaled a mile to get donuts (a reward for exercising).  We pass by a huge grassy field on our route and paused to watch a man throwing a ball to his dog.  A golden retriever, she looked to be a mature animal, but what do I know about dogs…Anyway, that dog wagged and ran and fetched and laid on the cool grass when she wanted to.  I can’t say I’ve ever seen a dog take a time out from playing fetch, but this one did.  “Her way of saying ‘time to go home'”, the man said.

Smart dog.

Lately I’ve started refusing to fetch, too.  Uh, I’m thinking about it, at least.   It’s tough to pull off; I block out what it looks like when I’ve fetched for far too long: stumbling, falling on my butt, weaving as I walk — overall, looking like I’m under the influence.   More horrible is that I’m inflicting this “new reality” on others.

As a therapist, being disabled is double-edged.  On the one side, I’m a role model for others with disability; the downside is that there are those who are put off by a therapist they may feel they have to take care of — someone who’s “broken” as one guy told me.  I hate it when that happens; I feel rejected.

It doesn’t matter that I don’t want what’s true to be true.  It is.  Imagining and pretending belong in private, if at all.   I can’t take pride unless I have pride; let go of what doesn’t work anymore.  Stop running so hard and so far.  The reality is more rapid disease progression and I’m pretending nothing’s changed.   I can’t take pride unless I have pride; let go of what doesn’t work anymore.  Stop running so hard and so far.

Geez, I hate it when a dog’s smarter than me…

Tell me, how ’bout you?  Accommodated yourself to a “new reality”?

Kathe Skinner is a psychotherapist and coach in private practice who specializes in work with couples, especially where invisible disability is present.  Her biking partner is David and could include Lucy and Pete.  But they refuse to ride in my basket, even though it means having the wind tickle their whiskers.

I love getting mail, the real kind you don’t have to print out.  The kind you have to get out of your chair for.  So I was excited to see my friend’s return address in the pile, and it wasn’t just because the envelope didn’t hold a bill.

I’ve always known her to be calm to my frantic, brave to my wimpiness, determined with a self-assuredness I still envy.  Just to give you an example, she confronted her fear of snakes by attending a museum program about reptiles.  She forced herself to handle them and she can now see one slither across her patio and admire the snake’s place in the circle of things.  I’ll go on record now that this will never be me; I got the heebies just typing the word “slither”.

We used to get together with other gals like us:  35+, smart, professional and not nuts about being single.   Those outings were always good for gossip although it was mostly me who did the “observing”.  David and I happened a year before her marriage to Bill and over the last quarter century, we’ve tracked each other from Connecticut to Colorado to Arizona.  Some years ago, Bill had a quadruple bypass and the stress on his body blossomed a latent case of multiple sclerosis.  At least that’s what I think.   As his health declined, my friend was just like the Hallmarks describe — loyal, loving, patient.  She, of course, would guffaw at this; oh, I know they had their moments, but her unwavering kindness really is true.

I can remember us eating a picnic lunch of hard-boiled eggs and pepperoni on a chilly spring day in Cripple Creek, Colorado.

She loves purple, eclecticism, and cats.

She loves her sisters, me and David, and asparagus.

A friend like that makes it easy to see the reason I was eager to read her note.  It said: Diagnosis:  Stage 4 Breast Cancer.  Treatment: Radical mastectomy, chemotherapy.

It takes a lot of someone else’s pain to make me cry, otherwise I couldn’t be a psychotherapist, unless that pain hits me where I live, and hers waltzed right in my door.   See, she’s never been about putting herself at the front of the soup line, so when we talked and cried over the phone it didn’t surprise me that through this she kept on keeping on … with work and with caregiving, placing Bill in respite care only for the week she had surgery.

Only one week after that phone call, my dear friend called to say she’d come home to find Bill, fallen on the floor.  He was dead.

She still likes asparagus, will always love cats, and will forever be a kind and good soul.  She’s learning to put her needs and wants toward the front of the line; done with chemotherapy, life is opening up in ways she’d never ever imagined.

I just wish it hadn’t taken these painful sorrows for her to act more, for herself, on the kind of love she gave the rest of us. I’m glad she is, now.

If you’ve got an invisible disability, or are in a relationship affected by one, what about my friend’s story do you relate to?

Kathe and Irene have been friends for over 27 years.  She is contemplating a move back home to Michigan after a stop here in Colorado to scatter Bill’s ashes in a Rocky Mountain spot he especially loved.  David and I will always be so happy to see Irene; our cats Petey and Lucy will love her on sight.

I used to think that if something didn’t turn out right (cake batter or laundering a stained blouse, say) the way to apply a fix was to add something.  More flour to the batter.  An applique over the stain.  I’d like to say those solutions worked, but we both know better.

So why do we seek to add a BIG COMPLICATION to an already-complicated situation?  I’m not talking returning a dog to the pound because he digs under the fence.  Or changing your mind about that four grand worth of furniture.

When a couple is pregnant (no, when a woman is pregnant; his job came and went) minds can’t be changed.  There’s no refunding or returning or throwing away.  Unless the baby is really ugly, adding an applique is foolish.  That marital satisfaction “plummets” after a baby arrives on the scene surprises couples.  That the surprise lasts for at least 18 more years is an even bigger one.

For couples who may always be in the throes of adjusting to the vagrancies of an invisible disability, a child’s demands may prove to be a tipping point.  If  disability involves fatigue (lupus, ms, cfids, heart condition, Lymes disease, and others) the impact of irregular and insufficient sleep is critical.

Such small examples and those few questions represent the immensity of the potential problems a couple with children may face.  Having a baby in the house is only the beginning.   Have the strength to hold and carry a baby?  Balance and mobility to walk with one?  Can you keep up with a toddler?

Attend every soccer game?  Cope with a tantrum?  Make dozens of cookies?  Help with homework after your own work?  Stay awake worrying when your teen is past curfew?  Teach your kid to drive?  Have the ability to exercise patience throughout a child’s growth?  Does your mental health enable you to be physically, spiritually, and emotionally present in a healthy way?

Face it:  Relationship is hard work.   Every.  Day.  Parenting is hard work.   Every.  Day.  And when the two are combined every day has the potential to be twice as hard.

There is no discounting the joy that children can bring, any less than relationship can complete us in a way we can’t do by ourselves.  However, like most everything else, awareness of what your choices may mean is the key.  Deciding to add a child to your family will present challenges and difficulties; expect it.  That your disability will be impacted in negative ways will happen; expect it.

Be sure your decision about having children is a hard one to make.

What do you think? How do you balance parenting with your invisible disability? Do you wish you’d made a different decision?  Comment and let us know.

Kathe Skinner is a psychotherapist in private practice.   In the high plains of Colorado with her partner, David, and their twin tabbies, Petey and Lucy, they all live with her multiple sclerosis.