[Diabetes-Talk] My marriage demands I tell my story

[Gary Wunder]

As the husband of our president and a member of the Diabetes Action Network Board, it is long past time when I should have written my story. It is not as dramatic as hers, but I will send it to Justin and offer it here for whatever it is worth. To make it more interesting for readers, I wrote what you see, then submitted it to ChatGPT to see what it would do with the story. It is included here as well. As a writer, I feel like I'm in a race, and artificial intelligence is in hot pursuit. Here is my story.

I often find myself looking at things I don’t like in the world and saying, “if I got to write the script, it would certainly be different.” Yet, in my own life, I have had a chance to write a very different script that I actually blew, got wrong, and now I must suffer the consequences.

When attending a yearly physical with my doctor, she noted that my blood sugar was higher than it should be and said that I was prediabetic. I knew my mother had diabetes and that my sister did as well. The doctor gently explained that there were some things that I could do: cut down on the intake of sweets, moderate my intake of carbohydrates, eat more green vegetables, and make sure that I had plenty of protein and fat in my diet. My response to her was, “I can do that.” Now you don’t have to have a fascination with grammar to realize that the verb in that sentence was wrong. I should have said will rather than can, and acting on can rather than will, I soon found my pharmacy delivering metformin and was angered because I thought they had made a mistake by giving me a drug intended for my wife. Well, there was no mistake at all: I was no longer prediabetic but a full-fledged diabetic.

I go to the drugstore, buy the needles, buy the strips, and order a talking glucometer. I find I hate the finger sticks, especially the ones that don’t give me enough blood or ones that I sold boggle that I do not get enough blood to give a valid test result using the strip. The second poke hurts more than the first because of the frustration that goes along with feeling if I had done it right the first time, I wouldn’t be suffering through another poke and wasting another strip.

Never was I happier than when I learned that there were continuous glucose monitors that would mean one stick every fourteen days. Even that one stick seemed less painful than the finger prick. My first frustration, of course, was to learn that I had to buy a reader that would receive the transmissions from the sensor in my arm. I got it home, paid somebody to help me set it up, and then realized that it was not at all usable without vision. No one had mentioned that at the pharmacy, and the reader was listed as a must-have if I was going to get the sensors.

Luckily I had heard about an iPhone application that could read the sensor. I downloaded it, read all the warnings, checked in number of boxes saying that I would not hold any company liable if the readings were incorrect, and started religiously monitoring my blood sugar levels. The continuous glucose monitor made an honest man out of me. I could no longer lie about the effects of that baked potato, a piece of cake, or a slice of my much-coveted pumpkin pie. But as great as it was to have this technology, every update put me at risk of losing the ability to read the sensor, and once in a while I did have to wait for the company to catch up with changes in the iPhone operating system.

Even though I can read my blood sugar level, I cannot independently look at much information that is available to sighted people. There is no way to interpret the graph that tells me how often I have been within range, when I am most likely to suffer a low, or when my blood sugar will go above where it should be. It is great that I can send this information to my doctor, but part of the value of the monitor is that I want to know what is going on and try to meet the targets that will lead not only to a longer life but to a greater quality of life as long as I have it.

I actively support the Medical Device Nonvisual Accessibility Act because diabetes, and most other diseases for that matter, are difficult enough to manage without the artificial barrier posed by electronic equipment that could deliver digital information just as easily through speech as it does on a screen. When I have an issue, I should not have to argue with the provider of my glucose sensor about whether the problem is with that device or that I use it in a nonstandard way. I should not have to decide between keeping up with security updates and monitoring my blood sugar. When it gets right down to it, I should not have to have a smart phone and know the skills necessary to use it in order to get something as simple and yet as necessary as my blood sugar readings. 

I am glad we are doing something about this. I hope that the Congress of the United States and the president of this great country will see that there are some issues that are nonpartisan and some that are as important as life and death. The solutions we need are not found in science fiction; they are in all kinds of devices around us. We should not have to convince the companies that market share should decide whether or not we get access; the quality and length of our lives should be considered so valuable that there should be unanimous agreement about making medical devices accessible. We must come to be seen as patients who are capable of taking care of ourselves rather than people who will necessarily be taken care of by others, and medical equipment used in the home should be adequate not only for us to take care of ourselves but to take care of the ones we love whether they be our seniors, our ailing spouses,  or our children.


Now, take your pick; here is the way ChatGPT rewrote my story. 

 
Title: Accessible Medical Devices: An Urgent Call for Inclusivity and Equal Opportunity in Healthcare
Introduction
In a world that offers countless opportunities to rewrite the script and make better choices, there are times when our past decisions lead us down paths that we cannot simply undo. As someone living with diabetes, I am all too familiar with the consequences of my own actions. However, the challenges I face daily in managing this condition are compounded by the lack of accessibility in the medical devices that are essential to my well-being.
A Journey Into Diabetes Management
When I was first diagnosed as prediabetic, my doctor advised me to make lifestyle changes that could potentially prevent the onset of full-blown diabetes. Unfortunately, I did not fully commit to those changes, and eventually, I became a diabetic. Managing this condition requires frequent blood sugar monitoring, which often involves finger sticks that are both painful and frustrating.
Discovering Continuous Glucose Monitors
The discovery of continuous glucose monitors (CGMs) was a game-changer for me, allowing me to monitor my blood sugar levels with significantly less discomfort. However, the initial excitement was short-lived when I found out that the device's reader was not accessible to those with vision impairments. Thankfully, there was an iPhone app that could read the sensor, but this solution had its own limitations and challenges, such as updates that could affect the app's functionality.
Inaccessible Medical Devices: A Barrier to Independence
Despite being able to monitor my blood sugar levels, I still faced accessibility barriers when it came to understanding the wealth of information available to sighted individuals. This lack of access hinders my ability to fully take control of my health and make informed decisions. It is for this reason that I support the Medical Device Nonvisual Accessibility Act.
The Need for Accessible Medical Devices
Diabetes and other diseases are difficult enough to manage without the added challenge of inaccessible electronic equipment. It is essential that medical devices provide digital information in formats that are accessible to all, including speech output. The quality and length of our lives should not be determined by a company's market share or the availability of accessibility features. We deserve equal access to healthcare and the opportunity to take care of ourselves and our loved ones.
A Call for Inclusivity and Equal Opportunity in Healthcare
It is my hope that the government and the medical device industry will recognize the importance of accessibility and inclusivity in healthcare. By making medical devices accessible, we can empower individuals to take control of their health, leading to longer and better-quality lives. In the end, the solutions we need are not far-fetched; they are within reach, and it is time to make them accessible to everyone.


Warmly,

Gary