Living with Disabilities — Part 2

October 13, 2010

Read part 1 of this non-fiction account here, then get a cup of tea or coffee and cozy up with your preferred mobile or desktop device. This isn’t going to be one of those fast reads.


First Encounters

The first time I saw Nancy standing was when I attended her physical therapy class. She seemed taller and more rotund than I’d imagined.

Although we had met twice before, it wasn’t easy for me to gauge her height or physique.

At 5 feet and 5 inches, wearing a green jersey over her new twill color pants, Nancy held the railing and tried to move her legs up and down and sideways, showing off those bright blue, cat-print socks.

Her right side wobbled frantically each time she had to move it, but her left leg seemed much more in control. As she tried to follow the commands of her teacher, she would turn her head of curly white medium length hair and look at me.

dishin lg 300x225 Living with Disabilities — Part 2Her lips would curl slightly, visible through her thick glasses I could see a soft smile would reach her eyes. She was trying to reassure me.

Watching Nancy and five other wheelchair-bound elderly women, I certainly felt like the odd one out.

Here I was, looking at these sprightly old ladies, all of whom had been affected by strokes, trying to move their limbs in a coordinated fashion to chirpy Hawaiian music. These women were discussing literature, politics, movies, sports – just like a bunch of talkative friends out for a weekly luncheon.

If not for their physically apparent impairments, I probably would have felt right at home, and might even have offered my analysis of why actresses wear what they do to the Oscars.

But I felt reticent.

Their energy and enthusiasm troubled me. They were in wheelchairs, for crying out loud! Weren’t they supposed to be lamenting about the cruelties life had dealt them? Weren’t they supposed to be sad, lifeless and bitter?

But this was their time to socialize. While their husbands enjoyed an hour by themselves or with friends, the wives shared an hour of bonding at the physical therapy center.

At 48, Nancy was the youngest in the group. And the most severely affected.


A different world

“I love bright colors,” Nancy says as I look in awe at the huge oil painting spanning half her living room wall. “That’s my husband sitting on the floor,” she explains.

The scene dates from when her family lived in California, and shows Charles, her husband, and a friend in their Santa Barbara living room. From the details on the tablecloth to the cat’s expression in the background, Nancy has captured the moment so vividly that I can barely take my eyes off it.

Born in Ohio, Nancy spent most of her teenage years in Indiana where she met Charlie, as she fondly calls him. “He pulled one of my sculptures out of the trash and hung it in his office,” she recounts, laughing in loud short bursts.

It sounds like she is gasping for air – she cocks back her head, crinkles her nose and laughs wantonly.

It is not a controlled, “civilized” laugh that most of us are used to.

But it’s infectious.

Charles was pursuing his Ph.D. in mathematics while Nancy was getting her undergrad degree in fine arts. They didn’t have many common friends but somehow they ran a lot into each other.

They had lived together for a year before Nancy went to pursue a master’s in painting in another state.

A couple of years later they exchanged their vows in a small outdoor ceremony with their families, a Methodist minister and about 20 guests. More than 150 people attended the reception later that afternoon.

“It was a picnic with hamburgers, baked beans and other picnic foods, a string band and old timey dancing,” Nancy recalls. “Rather than toss a bouquet, I flung my flower wreath like a frisbee.”

As we laugh together, I can’t help but contrast the life Nancy had with and the one she is leading now.

Nancy cannot walk – she never will.

She’s been in a wheelchair for 12 years, using her hands to roll the wheels and her legs to navigate the turns.woman in wheelchair1 Living with Disabilities — Part 2

It’s been a long time since she’s prepared a meal for her family, and an even longer time since she’s danced. When she speaks, it is hard to understand what she is saying.

Though she does not mind repeating, I feel awkward making her say something over and over again.

She swallows a lot while talking and exerts great effort to make herself understood.

Some words are slurred, others over-emphasized, and the combination is such that I find myself guessing what she is saying most of the time during our first meeting.

I nod and smile at times, without knowing what she is saying.

With Nancy, one needs patience.

A peek into what used to be…

My meetings with her never lasted less than an hour – it probably would have taken half the time if not for her speech impairments.

As we chat about her college days, I notice that she laughs midway or even before starting a sentence – a result of the odd way her mind and body coordinate.

While her brain processes her thoughts swiftly enough to elicit a reaction, it takes much longer for them to become coherent speech.

What an ordeal to go through each time you want to express something!

And yet Nancy has a lot to say.

“I liked Santa Barbara a lot,” she says.

Charles and she had moved there shortly after their marriage, when he joined the local university as a math professor. But when he found a better-paying position in Buffalo, they moved to the East Coast.

A few months later, Nancy was pregnant – but unfortunately the child died soon after delivery.

Charles and she were devastated.

As luck would have it, some friends called up and informed Charles of an opening in Los Angeles.
 Living with Disabilities — Part 2
Aware that Nancy liked the West Coast, and wanting a change of scenery after the traumatic incident in Buffalo, Charles applied and was soon offered the position.

Nancy started working part-time at the local library, and art stores in Los Angeles, while Charles continued teaching. But she loved painting more than anything else.

David was born when Nancy was 34. Barely two months later, they moved back to Buffalo – this time a family of three.

Charles had been offered a bigger salary, and knowing that Nancy would not be able to able to work for some time, he chose to move again.

And, yet again when he found a professorship in Iowa … the low cost of living in the Midwest allowed him to support his family a little easier.

As soon as they settled down, Nancy joined a breastfeeding group and a playgroup. It didn’t take too long for Nancy to make a lot of friends but soon the difference between acquaintances and real friends would become apparent.


A life-altering experience

A friend from Nancy’s breastfeeding group, ND, remembers the day: “Nancy was looking over my son for me,” recalls ND. “When I came to pick him up, she said she was not feeling good. I thought she was just being paranoid especially after having lost two kids.”

Nancy had had an ectopic pregnancy (implantation and subsequent development of a fertilized ovum outside the uterus) that had to be terminated shortly after she had moved to Iowa. “She had reasons to get anxious, but I kept telling her it was normal pregnancy worries and she’d be ok after a while.”

Nancy was 23 weeks pregnant but in good health. She and Charles were scheduled to have dinner at a friend’s house that night.

But they canceled.

“I wasn’t feeling too good,” explains Nancy. “I was just feeling nauseas, but when we reached the hospital, the nausea abated.”

Nancy was being seen by a high-risk pregnancy specialist because in her previous pregnancies she had been diagnosed as having a syndrome known as HELLP.

It is an acronym composed of the symptoms of the disorder: Hemolysis Elevated Liver enzymes and a Low Platelet count.

HELLP is an unusual disorder that occurs during the third trimester of pregnancy whose origins are not well understood. Something goes wrong with the kidney and it starts retaining sodium and leaks protein … to add to this complication there is a reduction in the platelet count, inflammation of the liver, increase in bilirubin, which is normally excreted, and damage of the small blood vessels.

High blood pressure and hypertension coupled with gastric pain, nausea, vomiting, and headache are main symptoms.

Nancy was exhibiting all these symptoms but due to some confusion at the hospital, along with the absence of her regular doctor, they were overlooked.

“I was sitting there throughout this whole thing trying to convince the hospital staff to look into her condition, but only when her convulsions started did anyone pay attention,” says Charles in tears.

By the time the residents took action, it was too late.

The stroke had greatly affected Nancy’s right side.

“I got a call from Charlie saying that Nancy had had a brain hemorrhage and was in coma,” recalls ND.

Only four to ten per 100,000 women have a chance of a stroke in pregnancy.

Nancy, unluckily, fell into that narrow category.

silhouette of a woman card p137598677248713657qzmm 210 e12869468441831 Living with Disabilities — Part 2Her right side was greatly affected by the stroke. In all probability, a blood clot had blocked a blood vessel or artery, interrupting blood flow to an area of her brain.

Within minutes to a few hours, the stroke event kills brain cells in the immediate area. Capabilities that area of the brain once controlled are lost, typically including speech, movement and memory functions.

Along with these abilities, Nancy lost many of her so-called friends.

ND describes how many of her acquaintances from the play group would pay regular visits – read to her, spend a lot of time by her bedside, but slowly they started moving away.

“Everyone realized that her condition was there to stay, it was going to be a constant bother – it really was not going to improve,” says ND.

A few months after the stroke when Nancy had started using the wheelchair, a party was organized by one woman from the playgroup. “I was horrified to learn that Nancy had not been invited because these people did not want her getting all the attention,” recalls ND.

Nancy had become an outcast.

An emotionally wrecked man, a three-year-old child, another dead baby, and a wheelchair-bound woman suddenly isolated – this was not the same bubbly family that had moved to Iowa.


A “milder” disability

Could this be me? I hate to admit it.

But the answer is yes.

This could be anyone.

What happened to Nancy might have been blamed on her doctors, but part of it stemmed from her medical condition, and perhaps some part was simply what folks call destiny.

After meeting Nancy, I decided I would never be able to live in a wheelchair, that I’d probably kill myself before being forced to lead a dependent life without the ability to walk, communicate, or take care of my own bodily functions.

Definitely, diabetes was a better bet.

Even before having met Bette, I had made my decision – I’d rather be her than Nancy.

Come back tomorrow to read what happens when I meet Bette…

16081BD1A60533E0F1173D28DE4F0D3F Living with Disabilities — Part 2

dp seal trans 16x16 Living with Disabilities — Part 2Copyright secured by Digiprove © 2010 Mansi Bhatia

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4 Responses to Living with Disabilities — Part 2

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