Living with Disabilities — Part 3

October 14, 2010

Read Part 1 and Part 2 before continuing this non-fiction account of these two women who showed me what it’s like to live a disabled life surrounded by “normal” people.
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The “milder” disability
Bette is a singer and songwriter, a registered nurse, a mother of three, and a music therapy student.

She is also a diabetic.

When I met her at Java House, a downtown coffee shop, I fathomed her life to be so much easier than Nancy’s.

She was, after all, “normal.”

For her going to the restroom was not an event, she could pay it a visit as many times as she wanted to. But soon I would realize that Bette also had her own daily battles to fight.

As we sipped our coffees, Bette kept saying this was a treat she was allowing herself.

For me it was just a regular cup of coffee; for her it was 45, or maybe 60, grams of carbohydrates.

“Being a diabetic is a full time job,” Bette said. “It doesn’t go away on holidays; it doesn’t go away when you are on a trip with your family. It’s always there.”

She shook her head and recounted discovering she had diabetes in the fall of 1986.

“I was thirsty all the time and using the rest room very frequently and I had begun to crave sweets. I did a test at home and my fears were confirmed but I did not want to go to a doctor. I did not want the diagnosis.”

Only after her husband, David, pushed her did Bette agree to visit an endocrinologist.

Bette was diagnosed with diabetes at 36, the same age Nancy was when she had her stroke.

Her sons Charles and Joel were 12 and 10 at that time, and Emily, adopted from Korea was two and a half.

Bette had had miscarriages prior to adopting Emily, which she thinks might have been related to her then-undiagnosed diabetes.

In addition, at 5 feet 3 inches and 200 pounds, Bette was admittedly overweight. “I had high blood pressure and was depressed all the time,” she says. “Who knows whether the diabetes led to the depression or the depression caused the diabetes. It is a chicken and egg situation, but the point is that I got it.”

Her husband Dave recalls, “I remember she was very upset when she found out, although maybe not really surprised because so many in her family had had diabetes,” recalls Dave. “It’s kind of like when you’re afraid something might happen and it actually does.”

Both Bette’s mom and brother had diabetes.

“Genes play a role in determining who will get diabetes, but they are not the only factor,” says her endocrinologist. “There are thousands of people with the genes, but not all of them end up with diabetes. There is some other second hit that triggers it and we still don’t know what it is. Diabetes is an equal opportunity employer. When it strikes, there’s no going back.”

A losing battle

Bette tried to manage her condition in the first year.

“I exercised a lot and was very careful with my diet,” she says. “My weight was down and I felt pretty good. It was almost like the honeymoon period – the golden year of my life. And then things just kept going down.”

Bette was on oral medication for a year before she became insulin dependent and the blood sugars became more erratic.

“Then she started using the pump, which was supposed to keep everything under better control,” tells Dave. “But I haven’t noticed a huge difference.”

The insulin pump, a small device that looks similar to a pager, delivers insulin constantly to Bette.

She can control the varying rates at which her body needs insulin and it means that she no longer had to inject herself.

But the “control” is only illusory.

Robin, Bette’s colleague, feels that the illness has not been easy for Bette.

“Over the past few years she has found it increasingly hard to deal with, and I have actually found her in tears on a few occasions fairly recently,” Robin says. “Every single day incorporates highs and lows in blood sugar, therefore her mood as well. She doesn’t really let you know, but sometimes you can tell because she seems flustered. If you pay close attention, you can see that sometimes she is getting something to eat out of her drawer, or having a juice or soda, so you know she must be low. I don’t think most diabetics have to live like Bette.”

I didn’t think that either. I’d been eight when my grandfather was diagnosed with diabetes, and as far as I knew, it just meant taking some pills, eating right and maintaining an exercise routine.

Easy enough.

Probably I did not understand anything about diabetes then.

Understanding Bette’s ailment
In type 1 diabetes mellitus, the kind Bette has, the pancreas undergoes an autoimmune attack by the body itself and is rendered incapable of making insulin.

In most people, the pancreas constantly secretes a small amount of insulin 24 hours a day, seven days a week. This background insulin is known as “basal” insulin. It is necessary because the body’s cells need to take in glucose all the time, even when the person is totally relaxed or even asleep.

The sugar is deposited in storage areas like the liver, fat and muscles. For most people, the basal insulin is relatively steady throughout the day, at somewhere between 0.5 to 2.0 units.

The process picks up when a person eats something that contains carbohydrates.

As digestion begins, the first carbohydrates to enter the stomach are broken into glucose, which 2437628 300x225 Living with Disabilities — Part 3makes blood sugar begin to rise within 10 to 20 minutes.

A functioning pancreas works a little like a thermostat. “The beta cells in the pancreas sense a rise in blood sugar and respond by secreting insulin which, when it enters the body, acts very quickly in lowering the blood sugar,” explains the endocrinologist. “And when the blood sugar returns to normal, the cells stops secreting insulin. They are like little glucostats.”

In Bette’s body, however, the beta cells in the pancreas don’t work so insulin is not produced.

Bette wears a pump designed to give tiny amounts of insulin throughout the day and, in essence, keeps her body functioning normally.

“Here, you want to see it?” she asks me while lifting her quarter-sleeved white shirt.

This black insulin-delivering device connected to a small, narrow, flexible plastic tubing ending with a needle inserted just under the skin of her stomach, is what she calls her life.

“It is an inconvenience, but what else can you do?” says Bette. “Our medication expenses are significant,” she tells me. “The insulin and insulin pump supplies are not cheap. But I need them to sustain life.”

She also takes antidepressants, vitamins, and medications to control blood pressure and lower cholesterol. “They are very important to keep me healthy,” she says.

Without insulin, Bette would develop severely elevated blood sugar levels leading to increased urine glucose, excessive loss of fluids and electrolytes in the urine.

Lack of insulin also causes the breakdown of fat cells, with the release of ketones into the blood which turn the blood acidic – a condition called diabetic ketoacidosis.

This condition, if not taken care of immediately, can lead to shock, coma or even death.

Bette indeed confronts frequent periods of high blood sugar called ketoacidosis, sometimes followed by intermittent periods of abnormally low glucose, or hypoglycemia.

Since blood sugar is essential to the normal functioning of the nerve cells in the brain, low blood sugar can lead to nervous system symptoms such as dizziness, confusion, weakness and tremors.

“You probably noticed this,” Bette says, pointing to her head. Her head shakes involuntarily, like an old woman’s trembling hands.

The movement is slight but noticeable. This is just one of the many complications that may have been caused by diabetes.

Diabetes is especially challenging to control because no two diabetics respond exactly alike to food, insulin, or exercise, and no two individuals, even if they show the same glucose test results, will experience precisely the same complications.

The disease is, by definition, unpredictable.

For most diabetics, most of the time, the rules work. So if they do this, or do not do that, they can always expect a certain result. But for some the usual does not appear to apply.

These diabetics are often described as “brittle.” Bette falls into that category.

It can be extremely difficult to know what’s happening inside her body and accordingly manipulate her intake of insulin.

“We can only focus on working with her on her diet and telling her how much she should exercise and what amounts of insulin she needs,” says her endocrinologist. “But we have no idea about the subtleties. Administering insulin is an inexact science. We tell patients to inject certain rates of insulin at certain times before and after meals assuming that the body is functioning perfectly otherwise, but there are 30 other things affecting blood sugar that we don’t know about.”

Being a brittle diabetic has added to her stress levels.

Dave tells me that when she is angry or frustrated about her diabetes, she fusses, swears, stomps around and talks about how much she hates “that damned disease!”
I feel sorry for Bette, knowing she was doing everything right and yet not getting the predicted results.

Then she tells me she is not a “perfect diabetic.”

When I ask her what she means, she says, “My idea of being perfect is that you are given a set of rules and you follow them perfectly, but over the years I have found that even if you follow the rules just right, you will still have problems. If you would have met me 15 years before, I would never have had that coffee with you – but now I let myself enjoy these indulgences.”

This makes sense to me: If your efforts must not work anyway, why not stray a bit?

Dave says Bette’s depression has by far been the most difficult aspect for him.

“With the diabetes, she could still do things, except maybe for the short periods when she was having an insulin reaction or when her blood sugars were spiking high,” he says. “But when the depression was severe, there’d be days or weeks when she didn’t want to do anything. She seemed like a different person. And you couldn’t fix it by giving her lifesavers or a can of juice.”

And so the roller-coaster ride goes on.

“Bette has been to so many doctors, nutritionists and other specialists in an effort to control this vicious disease,” says Carolyn, Bette’s close friend for 36 years. “She truly tries to manage this disease but just when things seem to be going along smoothly, she will have a severe high sugar episode or a severe low. They seem to come without rhyme or reason sometimes, which makes it even harder. To me, it would be like living with a ticking time bomb – always on alert in case it goes off.”

The life before

Bette’s life was not always so diabetes-centric.

Even though her mom and brother had the disease, she never felt its presence looming.

For her, singing was everything. Born in August 1950 in Wisconsin, she was the younger of two children.

“The high point of my life was when I won a talent contest and the school took me to New York for five days,” she says.

Bette was 17 then, and thinking of becoming a nurse. She enrolled in college and three years later had a nursing diploma from the University of Wisconsin.

Bette was working as the nurse at a church camp in north central Wisconsin and Dave was the camp program director when they met in the summer of 1971.

They were two of the guitar players at camp, and it was their common love of music that brought them closer together. “And since then, we’ve always sung together – weddings and coffee shops and church services and just for fun,” says Dave. “It’s what we do. It’s something we share.”

They were engaged six months later and married the following spring. “Our wedding took place in a country church about a mile down the road from Bette’s home in southwestern Wisconsin,” recalls Dave. “It was a sunny Saturday afternoon in late May, kind of hot but otherwise perfect in every way. Most of our favorite people were there to help us celebrate. The ceremony itself was the regular Lutheran wedding ceremony, except we wrote the vows ourselves. A friend from camp sang a couple songs, my sister played the flute and Bette’s aunt was the organist.”

Music has remained an integral part of Bette’s life. “It has helped her cope with many things, her diabetes included,” says Dave, a website coordinator.

Dave has a Ph.D. in theater from the University of Kansas, and also has taught theater and reviewed plays for the local paper.

“We have been to a lot of places,” says Bette. “But somehow we’ve always ended up being in Iowa or nearby.”

Bette has stuck to being a nurse. “It is what I enjoy doing most,” she says. “I wanted to be a counselor at some point, but I think being a nurse is much better – I can talk to my clients more freely and it gives me a lot of satisfaction.”

Bette is one of the “old ones” at her office.

Most of the nurses there are in their late 20s or early 30s but Bette is popular.
knowledgeofdiabetes 2 300x200 Living with Disabilities — Part 3
“She really enjoys her friendships at the office, and is usually one of the ‘planners’ for good times and social events,” says Robin. “She is one of those people that if she were to leave and find another job, she would be irreplaceable. No one could fill her shoes. The younger girls in the office really look up to her and seek her advice on matters including everything from the job to their love lives.”

Much as Bette continues to enjoy both her work as a nurse and her music, she never forgets about the condition that needs attention all the time.

“Every morning that I wake up it seems like a regular day and then I remember oh, I have diabetes! Yesterday’s gone and tomorrow has changed, but then life isn’t necessarily perfect, right?”

That statement strikes me as new, and so true.

I’ve always lived with the illusion that nothing can go awry in my life, but nothing should have gone awry in Bette and Nancy’s lives either.

They were just like me – normal. And then everything changed – for the worse, I would think.

——-

It seemed like an impossible choice … here were two women dealing with very different kinds of disabilities, but hidden somewhere in those disabilities that seemed to define their daily lives, were amazing abilities. Perhaps, I needed to look harder at what they could do, as opposed to everything they couldn’t.

Come back tomorrow for more on their journey and the one they got me started on…

16081BD1A60533E0F1173D28DE4F0D3F Living with Disabilities — Part 3

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2 Responses to Living with Disabilities — Part 3

  1. suloNo Gravatar on October 14, 2010 at 8:43 pm

    The 3 episodes got me gripping… will wait for tomorrow… really feel sorry for them - living with disabilities is surely an insurmountable task… :(

    One can never gauge the weird turns life would take - for better/worse, hey na…

  2. [...] 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 [...]



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