Living with Disabilities — Part 4

October 15, 2010

Now that you’ve read Part1 — my difficulty dealing with the idea of having a disabled child (which really was about my issues with disabilities); Part 2 — Nancy’s journey of adapting to a life on a wheelchair; and Part 3 — Bette’s constant struggle with diabetes, here is a look at some other aspects of their lives that you wouldn’t expect…that I didn’t expect given how I viewed them only through the lens of limitations and social prejudice.


The show must go on

“I used to love dancing,” Nancy says. She’s showing me pictures from Santa Barabara. In one, dressed as a Hungarian shepherdess, she looks healthy and happy.

Charles used to accompany her sometimes, even though he acknowledges that he was an awkward dancer. “Oh he is such a good sport,” says Nancy. “He would dance with me because I loved it so much.”

wheelchairSimonPaisThomas 300x225 Living with Disabilities — Part 4Today, she can’t even go out for an ice cream when she feels like it.

She has to call the local paratransit service usually a week ahead although she says the service sometimes accommodates requests within two hours.

So much for spontaneity in life, I think to myself.

Almost as if she has read my thoughts, she adds, “My husband really allows me to be spontaneous; without him I probably wouldn’t be able to act on the spur of the moment.”

Indeed, Charles has been by Nancy’s side through everything. “We’ve had many miseries – we’ve seen a lot as a family,” he says.

At one time Charles was even more optimistic than the doctors. “He would try to make her walk and was very determined at one point of time,” says her friend ND. “And she tried very hard, but it was just not going to happen.”

Throughout my meetings with Nancy, I wondered why Charles had chosen to stay. From going to the restroom, to eating her meals – Nancy needed help at every step in the first few years after the stroke.

Having a full time job and a small child to take care of besides Nancy, Charles could have easily given up.

“He probably needs her more than she needs him,” explains Nancy’s playgroup friend, AG. “He doesn’t have any social skills and Nancy is just so gregarious; she holds him steady.”

David, Nancy’s 15-year-old son, takes care of her now along with Charles. “And now David is growing older, it is nice to see him push her wheelchair and take her to the mall,” says AG.

David has been the center of Nancy’s life for a long time now.

By all accounts, her slurred speech and limited mobility have not interfered with motherhood.

“She encourages him in music, attends his parent-teacher conferences, and maintains a firm but caring demeanor in interactions with him,” says MB, Nancy’s colleague at a coalition for persons with disabilities.

“When David was younger, Nancy would at times bring David with her to various meetings if Charlie was out of town. David’s friends are in and out when I visit her, and she is available to be ‘the adult’ as the boys play whatever. The love and respect between mother and son is evident.”

David is special, not only because he is Nancy’s only child, but also because he has Asperger’s syndrome.

This syndrome is characterized by severe and sustained impairment in social interaction, development of restricted and repetitive patterns of behavior, interests, and activities, and results in clinically significant impairment in social, occupational, or other important areas of functioning.

David was diagnosed with this “non-verbal disability,” as Nancy calls it, when he was in fifth or sixth grade.

“He doesn’t have many friends,” says Nancy. “Charlie and I are his best buddies.”

At six feet two inches, David peers over his mother affectionately. Although he is talkative and outgoing, David acts inappropriately at times.

“He is not good at understanding non-verbal cues, like he wouldn’t notice when you are getting bored and continue talking,” says AG, whose son Dan also suffers from the same syndrome. “There have been so many times when Nancy and I have just sat down and said “Aaaaaargh!” – it’s good that Nancy understands what I am going through.”

Besides being there for David at all times, Nancy has also done a lot for the coalition for persons with disabilities.

“Over the years I have known Nancy, I see her becoming more important to the survival of the organization as she becomes a focal point for contacts from coalition members,” says MB.

Giving back to the community

Nancy has organized archival documents and audiovisual materials, photos, clippings, and project notebooks, and audited the stores at a local mall and a clinic for accessibility.

Nancy chaired the coalition for two years in the 1990s. She has also been on an advisory committee focusing on accessibility at a county senior center and sat on the city’s parks and recreation commission.

“I realize that physical limitations curb my interests,” says Nancy.

She mentions a restaurant that has been the center of a folk and roots music community in her town, since it opened in 1962, as one place lacking a handicapped accessible bathroom.

“I used to enjoy the music but now I can’t go, or if I go then I cannot have a beer,” she says.

This sort of experience motivates her to continue working for accessibility for others – she’s written grants and helped organize workgroups and conferences as well as arranging alternative transport. She’s also been a pivotal member of a local committee, which plans and promotes an annual celebration of the signing of the American with Disabilities Act in 1990.

I can see that in spite of her limited mobility and impaired speech Nancy hasn’t given up on being a contributing member of society.

“There’s only so much that can be changed, though,” she says. “I want to visit my neighbors but I can’thandicap 300x263 Living with Disabilities — Part 4 because most of them don’t have a ramp, they have steps leading up to their house. I can only wait for them to come and visit me, which rarely happens.”

So she focuses on working for the coalition, taking care of David, and interacting with her few close friends.

As for Charles, “He has things to take care of,” Nancy says when I ask her about his absences to attend conferences.

“That’s his way of dealing with it,” contemplates Nancy’s friend ND.

Nancy knows that Charles still grieves. “The man that I married is older but basically the same. The woman he married, who sang and played guitar with him and danced and hiked, is dead,” she says.

But ND disputes this by saying, “She is the same person.”

ND is one of only three friends who have stuck around.

Charles explains this to me by saying, “Why would anyone want to associate with a woman, half of whose time goes in taking care of her bodily functions?”

I’m quiet for a moment before realizing what I’ve in common with Nancy – a love for painting, reading, shopping!

Suddenly I am thinking of her not in terms of disability, but in terms of abilities!

Beneath that slow-speaking, wheelchair-bound exterior is a bright, intelligent, and active mind.

The person, not the chair

ND recounts how she came to appreciate her friendship with Nancy even more after the stroke.

“When people start bothering about what everyone will think about them because of the person who is attitudes 300x219 Living with Disabilities — Part 4disabled, they try to stay away. I was uncomfortable, too, in the beginning. I would either be cheerful all the time, or just keep narrating all the problems I was going through to make her feel my life was more miserable. I was not myself and I don’t know if Nancy saw through it, but it was just so difficult to know how to behave appropriately.”

Eventually, ND reached a point where she felt comfortable being just a friend again, not a caretaker.

“We have reached full circle in our friendship,” she says. “We are at a more equal stage now in our relationship, where I know I don’t have to do anything special for her. We can just talk, bounce off ideas, laugh, go shopping together, and just do normal things that friends do. I can be myself.”

AG feels the same way, saying, “After having spent so much time with her, and having known her as a person, you forget that she is on a wheelchair. But when food is sticking on her mouth and she doesn’t feel it, or when she talks to someone and that person looks toward me for translation, I become aware of Nancy’s disability.”

MB believes that apart from the social prejudices associated with physical disabilities, maintaining contact is also a question of accessibility.

“People rally around an individual who becomes disabled and then abandon them, because I think they are extremely preoccupied with their own lives,” she says. “Friendships, like marriages, take work. It is also difficult at times to meet with a person who requires accessible surroundings unless you go to them or you meet in an accessible restaurant or coffee shop.”

Nancy herself thinks most people simply cannot deal with someone in a wheelchair.

“It bothers them and probably scares them,” she says. If disability itself causes problems, they are compounded by social attitudes it seems. Sometimes the social barriers seem greater than the physical ones.

So did Bette have it better?

It’s only diabetes!

“With the visible disabilities I see and feel different attitudes as soon as they walk through the door of our office,” says Robin, Bette’s colleague. “For that reason, I have often thought that if given a choice I would much rather battle an invisible one. You choose who you let in on your secret.”

Robin mirrored my thoughts.

There was at least a sense of control with an invisible disability – if you are on a wheelchair, what can you do to hide it?

You are forced to face the unpleasant reactions thrown your way, but in Bette’s case there was no need for anyone to know.

“I hate it when people ask me if I can have this, or if I can’t have that. I hate the unnecessary attention,” says Bette. “I don’t tell people I have diabetes because that is all they will think and talk about when it comes to me. I am much more than my diabetes.”

In fact, though, diabetes has taken over her life in more ways than one.

The day after we first met downtown, Bette wrote me an e-mail.

Her morning had started with a low blood sugar, which meant she had to drink juice and eat breakfast to compensate.

At church, she struggled to stay awake – another consequence. Dave was looking out for her all the time.

And it was her fault, she said, for having indulged herself with one cup of café mocha, when she met with me.

What kind of a life was this?

Bette has to prick her finger to check her blood sugar levels at least four to six times a day – every time before a meal, once at midnight and then at around 3 a.m.

Before she pops anything in her mouth, she needs to know how many calories and carbohydrates that food item contains.

Then she has to figure out how much insulin her body would need to take care of the rise in blood sugar as a consequence of her meals.

She has to try and maintain her blood sugar levels between 70 to 100 milligrams of sugar per deciliter of blood which is the normal quantity for non-diabetics.

I never knew my grandpa went through all this every day – if I did, I probably would not have chosen diabetes as a hypothetical disability for myself.

What a drag to make so many calculations before eating anything. If this were to happen to me, I’d probably lose all interest in food!

It’s difficult for Bette to socialize anytime food is involved.

“They’ll have a birthday party for somebody at her office, and so they’ll have treats, cake or whatever. ‘Won’t you have some, Bette? Oh, that’s right!’ they’ll remember,” tells Dave. “It’s surprising that after a while people don’t remember. You really notice, when you live with a diabetic, how widespread the sugary treats are and how unusual it is for somebody to think to provide something that a diabetic invisible disability 300x203 Living with Disabilities — Part 4could enjoy, too.”

Inviting her over to Java House for an interview probably hadn’t been a wise idea, I thought. We should have met at a park.

“Since we’ve met, I have had more highs and lows – the worst being yesterday when I woke up and saw that my tubing had become unattached, meaning that I had stopped receiving insulin sometime during the night,” e-mailed Bette. “Should’ve checked that at 3 a.m., when I got up to urinate. However, I was too tired and went back to sleep – another consequence of the high blood sugar. So I woke with a blood sugar of 566 and large urine ketones, which would send many a diabetic to the Emergency Room, but I changed the tubing, took a large dose of insulin, and went to work.”

It isn’t that simple

“Diabetes is such a ‘should’ve’ or ‘shouldn’t have’ disease,” she says. “What is disabling to me about diabetes is the fear, the omnipresent fear that if I get really sick, I will suffer and then die. The fear that I won’t be able to control what is happening to me; that someone else will have to poke my fingers for blood samples or give me insulin shots. I’m afraid of being hurt. I am afraid of having a heart attack and not surviving, of having a stroke and not being able to care for myself, to have to be fed, bathed, dependent totally on another for comfort, of going blind.”

Certainly, the diabetes has affected Dave’s life as well.

“You’re always dealing with something in a marriage, aren’t you? If she were perfectly healthy, there would still be something,” he says. “But the diabetes is certainly no good. We’ll be looking forward to a weekend together, and then she’ll wake up with a low or a really high blood sugar, and then the day’s pretty much shot. She’ll need to sleep it off, or she’ll just feel bad and not want to do anything. Or we’ll be doing groceries, and she’ll be gradually taking longer and longer to decide which tube of toothpaste to buy or staring at a box of Kleenex like she can’t decide about it, and I’ll be getting annoyed because I like to shop fast, and then I’ll realize that she’s getting low and her mind just isn’t working up to speed.”

Dave adds: “If she gets the flu or some other more or less ordinary ailment that everybody gets, you always wonder where it’s going to go. A certain percentage of the time, we end up in the emergency room in the middle of the night because the ‘ordinary’ virus knocks her blood sugars way out of whack and then, instead of being an ordinary ailment, it’s a crisis.”

Bette admits the unpredictable and chronic nature of the diabetes is tough to handle.

“I probably work a good 30 percent of the time not feeling well,” she confesses. “I tire easily. I get moody. I am about one month behind going to see my doctor because I worry that he’ll scold me for not losing more weight. Even though I am faithful about working out – there is always that ‘should’ do more or ‘should’ do better.”

A normal life

Some of Bette’s fears are realities that Nancy lives with.

Bette was voicing part of my own fears.

The fear of the unknown; the fear of dependence; the fear of being left alone by loved ones; the fear of dying a cripple.

But by this point, I was feeling like Nancy probably had less to deal with than Bette.

For Nancy the stroke has happened, the damage has been done, and she is living with consequences that are pretty much stable.

For Bette, on the other hand, every day presents new challenges.

Bette’s condition is not as “fixable” as I previously supposed.

Nancy has ramps to ease her wheelchair into shops, automatic doors to allow her entry into buildings,DIAM Logo 300x287 Living with Disabilities — Part 4 spacious restrooms to let her perform her bodily functions with privacy and comfort.

Granted that Nancy faces more social seclusion than Bette ever will, but at least she fights the same battle every day.

For Bette, the battlefield changes continuously.

It isn’t just about not being able to eat sugar, for Bette it is about living with a disease that research shows will shorten her life.

“There is a chance that Bette may lose her eyesight, her mobility, have heart disease or a stroke, or have liver damage,” says Bette’s endocrinologist “The complications in diabetes are really related to the narrowing of the blood vessels and it effectively affects every part of your body.”

For Bette, every doctor’s visit is nerve-racking.

“When I see the eye doctor, I hold my breath until he says my retinas look good. If he says that, I sigh with relief,” she says. “I want to grow old. I want to play with my grandchildren. I want to be a vibrant companion for my husband, not a burden. I want to see and wear colors for a long time. I want to laugh easily, walk, breathe deep. I just want to live a normal life.”

Don’t we all? But what is “normal?”

Now that you’ve read everything I experienced with these two very different women, what do you think? Hypothetically, whose disability would you choose to live through? Do you think Nancy’s life is easier than Bette’s?

Come back tomorrow to read what I concluded from these intense emotional experiences.

16081BD1A60533E0F1173D28DE4F0D3F Living with Disabilities — Part 4

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One Response to Living with Disabilities — Part 4

  1. suloNo Gravatar on October 16, 2010 at 8:50 pm

    man! it really got me teary-eyed. i dont think i can even think of a hypothetical case in here… they have braved it well… or may be they are trying to with all their heart… :(

    just like you pointed out, though the ones with disabilities have their own mental/physical agonies – their friends n families do need that extra bit of grit to stay focused n “normal”

    ‘so much for spontaneity in life!!!’ :/


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