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.

How Come It’s “We’re Pregnant” But It’s Not “We’re Disabled”?

I don’t know when it became fashionable to identify pregnancy as an adventure à deux.  It always seemed lopsided that pregnancy excluded men from throwing up, having swollen ankles and shrewish moods.  I’m not even talking about all those forever changes like stretch marks, a bigger butt, and wider hips.  With the possibility of gestational diabetes, postpartum depression, or miscarriage, the adventure becomes a challenge, albeit one that affects the relationship although it is physically experienced only by the woman.

Not to make it one-sided, men’s experiences are extraordinary, too, and may include being the target of a woman’s whacky moods or being the late-night junk food scrounger.  For guys, it hits that the two of you are now a family, with all the attendant expectations to be the one who forevermore protects and provides.

Without a doubt there are many, many women for whom pregnancy is a delightful experience. The glowing, the growing, and giving life is an experience like no other.  Pregnant women and moms belong to an exclusive club that has unbend-able  membership rules.  So even if it was the two of you being pregnant, only one of you, in the strictest sense, is a mom.

It’s the same when a woman is disabled or chronically ill.  Only one of you is impaired even while both of you — your relationship — can be impaired.   Having an invisible disability can be the worst of all.

Our society looks for proof; needs to name it; needs to touch it or otherwise experience its reality.  You can’t be “a little bit pregnant”; you either are or you’re not.  Pee on a stick and you prove it.  With invisible disabilities, there’s no pee test.  For some people, taking it on faith is harder than believing that what isn’t seen is true.  For example, not being able to prove the existence of god doesn’t mean god doesn’t exist.  Obviously, it’s the emotion surrounding belief that counts; to disbelieve or doubt a person’s physical or emotional perceptions is tantamount to discrediting someone’s very existence.  The truth of it is immaterial, while the emotion surrounding such thoughts is what counts.  The thoughts may even be rooted in jealousy of a sort – “What, so you get a break but I don’t?”  “Buck up, you’re just being lazy.”  “I worked all day but I still have to make dinner and do the laundry and get the kids to bed before I can sit down and catch my breath and where are you? in bed.”

Quantification when invisible disability is present requires a different yardstick but most of all it requires belief, support, and compassion.

Adding a stress load to any system that is already compromised results in a predictable, and usually disastrous, outcome (think of how a building with cracks in the foundation responds to an earthquake).  The same thing happens when an already dysfunctional body system is unable to respond well when stressors are piled on.  Such stressors may include walking through a mall or having relationship difficulties.

“We’re pregnant” or “we’re disabled” is an implicit bonding between partners.  Life-changing events happen from which there is no return.  Legal sanctions apply in both situations:  the 20% of women, nationwide, who are disabled are entitled to lifetime support; children until they reach the age of majority.  Society doesn’t seem to have recognized that the “we” of marriage with children and the “we” of disability in a relationship are the same thing.

To say “we’re disabled” says that both partners are in it together, that there is emotional and physical support of the partner who is less capacitated. Pregnancy usually involves the active participation of both partners while acquiring disability isn’t chosen by either partner.  Parenthood never ends, just as disability does not; a major difference is in the expected trajectory – that parenting gets more pleasurable once the nest is empty, while disability often does the opposite.  Disability is different in that there is no consent, no pre-planning, and certainly no enjoyment in acquiring the condition.

Kathe Skinner is a Relationship Coach in private practice.   Specializing in relationships, especially those with invisible disability in the mix, she offers both in-person and web-based programs for couples.  See http://www.BeingHeardNow.com to find the right program for you!

©Kathe Skinner, 2012