Love, Needs, Giving: A Partner’s Perspective on Disability [Guest Post by John Thielman]

Happy spring! Today the blog breaks its unintentional (but by no means surprising by now) silence with a special treat. Yesterday marks 3 years since one online exchange began a friendship, which grew into a relationship, and is on its way to becoming a marriage. Since May is the month John and I met, I am honored and proud to share his guest blog with you, which offers his perspective as the partner of someone with a disability. I am sure his kindness and honesty will encourage all of you, as it does me every day.  Enjoy!

Image

K Summers Photography, 2014

Beth often shares stories with me of her odd encounters with well-meaning, but socially awkward, strangers. One of the questions she gets most often is: “So is your fiancé in a wheelchair, too?”

It’s tempting to try to laugh that question off, but the more I think about its implications, the less I like it.  Nobody asks me if my fiancé needs glasses too, or if she is also Caucasian, or is also going grey at the temples.  Everyone seems to recognize that a woman wouldn’t have to share my bad eyesight (or any other arbitrary, superficial characteristic) to be interested in marrying me, but for some reason it’s very common to assume that only a man who also has a disability would be interested in a woman with one. It’s as if people believe “typical” cannot love “different”. And this assertion that is not only false, but painful.

So, how does a relationship work when one of the participants has a disability?  Truth to tell, I don’t know how a relationship works when neither does (I was in a relationship once before, with someone without a disability, but I can’t say the relationship actually worked).  Ours is like any other relationship: we talk to one another, we listen, we try to help.

As far as I can tell, everybody needs help with something in life.  Some people are bad at doing their taxes, some are late everywhere they go, many have insecurities and some have legs that don’t work properly.  So just as Beth doesn’t think anything of helping me with my insecurities and the challenges I face as a student in a foreign country, I think absolutely nothing of helping her get up and down stairs, preparing a meal for us to share, or helping her around the house.

In fact, it is this act of helping that brings us closer together.  In order to allow her to help me, I have to make myself vulnerable to her emotionally, which is never easy (well, by now it’s easier because we’ve been doing it for so long), and in order to allow me to help her, she has to be very vulnerable to me physically.  It all requires a lot of trust, but our trust in one another is always rewarded.

Honestly though, it is the distance between us (not her disability) that has always been the biggest problem to overcome.  We have never lived in the same city, and never less than 800 miles apart.  Now it’s more like 4,600.  But we talk every day on skype, often for hours, sometimes more than once. [Since starting our relationship in September 2012, we have only gone 2 days without Skyping!]  We’ve been told that we talk more to one another than do some couples who live together.  This is no surprise, since we can’t do much more than exchange words, so we exchange lots and lots of them, and we weigh them carefully.

So, distance has become our teacher, helping us learn to communicate honestly and lovingly with one another.  And because being apart forces us to find a silver lining, each of us strives to discern the best and most loving interpretation of the other’s words.  When we can’t find that right away, we push through any negative feelings, and ask for clarification.  We do our best to understand each other’s needs and to help fulfill those needs.   And it turns out not to matter so much what [or even whose] those specific needs are; the remedy is still the same. We speak, we listen, we understand, we give and take, we help each other. We love each other. That’s really all there is to it.

***

Originally from Menomonie, Wisconsin, John is earning his Master’s Degree in Historical Linguistics from the Humboldt University in Berlin, and holds a B.A. in Classics from Gustavus Adolphus College. He enjoys tailoring, cooking, and all things Tolkien. His favorite pastimes are reading, sipping fine whiskey, and shooting the breeze with his Intended. 

the reason for moonlight

The Reason for Moonlight (a love story)

4/12/10

The Sun and Moon were sat one day

Beneath a shady tree

While on a picnic with the Clouds

On blankets by the sea.

The Sun said to the Moon,

“My dear, how do you look so fair?

How does your beauty shine so bright

That poets gawk and stare?”

The Moon looked at the Sun and blushed;

Her laugh drew in the tide.

She called the Clouds around her

To have a place to hide.

The waves wanted to eavesdrop.

They clamored for the shore

While Sun peered through the fog at Moon

To marvel and adore.

“Come out from there, my darling.

The stars are looking pale.

Without your smile to guide the night

Its sweet air will go stale.”

Then Moon emerged and sent the Clouds

To bed upon the grass.

They tickled all the blades with dew

And made them shine like glass.

Sun peeked over the Earth at Moon

To flirt away the days.

Her glances made him clumsy

He scattered all his rays

One day Moon called Sun over

To whisper in his ear,

“I will tell you now the secret

Of my beauty, Sun, my dear”

“You are my secret,” said the Moon,

“I shine because of you

My face would be so cold and grey

Without your light, it’s true.”

“There’d be no night without the day.

The world would not repose.

And it will have no need for me

Unless you hold me close.”

Sun made a vow to Moon then

To keep her as his own

To watch the World with her

And leave her not alone.

His gaze is on her even now

Embracing her in beams

And filling Earth between them

With days and nights and dreams.

shark fins

Holding hands

Is what people in dreams do

Dancing stars

Fall between me before you

And we lose ourselves

Shopping malls

Look better in outer space

Waterfalls

Wash the freckles from your face

And we lose ourselves

Will I find you

Will I find you

When I wake up
Roller skates

Are more fun on the sidewalk

Rainbows scraped

On the driveway in orange chalk

And we close our eyes

Lemonade

Fills a glass in a diner

Running late

Life has never looked finer

And we close our eyes
Will I find you

Will I find you

When I wake up
Children play

In the dirt on the playground

Dinner bells

Make obtrusive alert sounds

And you see my face

Picture frames

Made of pasta and sequins

Swimming pools

Full of hands making shark fins

And you see my face
You have found me

You have found me

And I wake up

– Beth Hopkins

(Please ask permission before copying and sharing with others. Many thanks!)

see also: hopeless?

Can you guess what word these definitions are attributed to?

  • “. . . Idealistic yet impractical; Passionate and imaginative rather than structured.”
  • “A soulful or amorous idealist. . .”
  • “Quixotic: not sensible about practical matters; idealistic and unrealistic. . .”

The answer: romantic.

true love? probably.

Wanting to write about my self-perception as a romantic for this entry, I decided go for accuracy and define it first. A parade of disappointments has me questioning whether I can remain a card-carrying romantic. I needed a gauge: can I still truly appreciate Nora Ephron films? Or should I crush all my roses for potpourri from now on?

As you can see, the  lexicographers pulled no punches here. I’m forced to admit the irony that, considering romance is the driving force behind these definitions, there is a distinct absence of flattery here. These are zingers.

The first definition negates idealism with impracticality. That is followed by placing passion and imagination as opposites to structure. Pardon me for not realizing these attributes were mutually exclusive. I am certainly idealistic, passionate, and imaginative- which I suppose makes me a romantic. But, according to the experts, this means I’m also chaotic, undisciplined, and impractical. This makes romanticism sound like something to be worked on and fixed. I’m not necessarily singing to woodland creatures, but I hesitate to fix my idealism claiming to sacrifice it for structure and practicality.

The second definition sounds harmless at first before you think about it: amorous means animated by passion and desire, and soulful implies that you are driven by emotions. I will credit this definition for poetic appearances, and I suppose I fit the bill this time, too. But am I completely driven by emotions? Does calling myself a romantic mean that I must also admit to being a hunka, hunka burnin’ love?

Saving the best for last: let’s not omit the last little wonder there: quixotic. Remember that guy? The delusional one who went to war against the windmills? Apparently that kind of behavior and a romantic outlook are one and the same. And idealistic is bundled together with unrealistic and not having any good sense.

and what's wrong with that?

Some people want to fill the world with silly love songs. (And what's wrong with that?)

One of the most common associations with the term “romantic” is “hopeless”. I know the intent behind that is that there’s no hope for the recovery of a romantic from that state of mind: he or she has bypassed the point of no return, and there is no sense in trying to get the pour soul be reasonable. But, if I take it at face value and think about a romantic lacking in hope: does it make sense? Can they coexist?

Of course they can. If you live life as an optimist- you are bound to be disappointed every now and again. And that disappointment probably isn’t assisted by the experts of the world labeling you impractical, delusional, and senseless. Then again, I’m just guessing.

So I suppose my self-examination is pretty conclusive: I am indeed a romantic. But as to the condition of my hope, the jury is still out. While they deliberate ¡Mataré los gigántes!

balancing: act?

“Nothing to do

Nowhere to be

A simple little kind of free

Nothing to do

No one but me

It isn’t really hard to see

Why I’m perfectly lonely

I’m perfectly lonely

Perfectly lonely, yeah

Cause I don’t belong to anyone

And nobody belongs to me.”

– “Perfectly Lonely”, John Mayer

*

Every one of us, attached or not, knows what it’s like to be single.

It isn’t the worst thing in the world by any means. I am very happy and thankful for my life- and am blessed to have learned volumes and grown by leaps and bounds as an independent lady! I have never been in a serious relationship, so I have had many years to learn (continually) about how to be happy with who I am and what I do have, rather than what I am “missing” (relatively speaking), or what other people have.

There is an understanding in those words that contentment and lonliness are not- as our statistics books may phrase it- mutually exclusive. Recent situations have reminded me just how true that is with matters of my own heart. It happens all the time: I meet someone wonderful, things seem to be moving along nicely, and then one, tiny, amoeba-sized thing happens and either I’m searching the Internet for china patterns, or thumbing through my Damien Rice collection looking for the perfect anthem to echo my desolation. What happened to Normalville? I was on my way there: how can one tiny thing send me reeling off the road?!

For an analogy, consider a scale. One one side is the carefree, happy romantic me that enjoys her bi-quarterly viewing of You’ve Got Mail. On the other, the insecure, somewhat jaded, perpetually single “best buddy” of heterosexual males. In most situations, the scales are balanced. But add a circumstance the weight of a feather on either side, and the scales tip all the way in that direction. One kind word or gentle smile, and I’m all optimism. One aloof moment, and I’m convinced that I am doomed to a life of isolation and spinsterhood, with only my emaciated felines to console me.

It is possible, where the Heart is concerned, for me to maintain a sense of balance.

But must it be so delicate? How can I be still? The whole world is spinning.

*

“And she walks along the edge of where the ocean meets the land,  just like she’s walking on a wire in the circus…” – Round Here, Counting Crows