Thursday, May 30, 2013

Just Different

"If you could have just one thing wrong with you, would you rather be blind or have diabetes?"

We had been driving for several hours, family and gear packed tightly into the car, coasting through the winding, rural roads on one of our sporadic yearly camping trips. The usual entertainments—books, Game Boys, colouring, walkmans, sightseeing, sleeping—had worn thin, and thus my brother's question popped through the silence.

My answer took a split second, but only a second. "I'd be blind," I said.

My brother was taken aback. "Why?!" His disbelief came through in his one-word question. "I think being blind is way worse than diabetes," he added.

"I don't," I said. I was a kid, though, and struggled to answer his question of why I would rather be blind than have diabetes.

My mother piped up from the front seat. "Jen's been blind her whole life," she said. "She's more used to it. And when you're blind, you don't need to prick your finger or take shots." I appreciated my mom's help, and my brother seemed satisfied, if still a bit disbelieving. The conversation turned to other topics as we neared the camp grounds. My mom had gotten the answer partly right, and the part she had missed was something I couldn't yet articulate.

That question has stuck with me throughout the years, though it had not been asked of me again in my memory. I have since seen this type of discussion occasionally crop up on diabetes forums and mailing lists, comparing diabetes to other diseases, discussing which complications are the worst, or debating whether Type 1 or Type 2 diabetes is the greater burden.

I think it's all a moot point. It's impossible to compare one disease or life experience to another as being better or worse. First, there's the problem than "better" and "worse" are completely subjective, and second, most of these are things that just can't be compared.

As an adult, I'm better able to articular what I couldn't as a child about why I said I would rather live with blindness than with diabetes. If given a choice, I'd rather live with neither—but I say that mostly out of convenience. Being able to drive, or pick up a printed page and read it, would be much more convenient than relying on a white cane, public transit, and assistive technology. Being able to pack lunch without the use of a food scale and calculator, or go through the day without the fear of when the next low might hit, would give me a lot more free time and a lot less stress. In reality, however, both of these circumstances have helped shape who I am today—and I'm not sure I would eliminate either.

My mom was partly right when she said that I picked blindness because it's what I was used to. But there was more to it than that. Blindness doesn't carry with it the future uncertainties that diabetes does. I don't feel threatened by it in the same way. It's not going to kill me while I sleep. It doesn't leave me wondering in the back of my mind if this may be the time I can't handle the situation on my own while treating a reading of 1.8 or 28.8 on my glucose meter. It doesn't cloud my future with fears about my health and quality of life. Even as a kid, I understood that diabetes posed dangers to my daily life and to my future that blindness did not.

For me, at that time in my life, diabetes was worse than blindness

Blindness does present its own challenges, and had my parents not been such strong advocates, I might have seen more of society's attitude early on. As it is, it wasn't until college and my first application for employment that I began to understand the ramifications of living with impaired sight in a sighted world. But mostly, from my perspective problems with blindness are caused with the way things are designed and with the attitudes of individuals and societies, and so it's not a big deal to me. If I was one of the large number of blind individuals currently unemployed or had grown up with more negative experiences, I might feel differently.

Which just goes to show how much of these types of arguments are a matter of perspective. People tend to fear blindness a lot, whether they have diabetes or not. Studies have shown that Americans fear blindness more than cancer, HIV, heart disease, or stroke, and that U.S. adults with diabetes feared blindness more than premature death. I find these statistics sad and slightly disturbing, though not really shocking. I've seen enough reactions, in person and online, professionally and personally, to know that most people are very, very scared of blindness and the idea of a child living without sight is about as tragic as it gets.

In the end, though, these two entities aren't really comparable. Diabetes poses a greater threat to my life than blindness. Blindness poses a greater social and attitudinal barrier than diabetes. Both of them cause some degree of daily nuisance. Some days it's having diabetes I hate, and other days it's being blind. Some days it's something completely different, like being allergic (which itself is usually seen as "no big deal" by many people).

Everyone faces different challenges in life, and it's silly to compare them. For some people their challenge is growing up in poverty, for others it's struggles with mental health or emotional issues, for some of us it's living with chronic illnesses or disabilities or both. Is it harder to face these challenges as a child or an adult? Is a childhood filled with the restrictions and fears of Type 1 diabetes worse than having to make major lifestyle changes and facing complications upon the diagnosis of Type 2 diabetes as an adult? Is a childhood of having to work twice as hard as peers and never knowing the beauty of sight worse than the life-altering impact of vision loss later in life? Is having either of these conditions, in a country where technology and supports are available, worse than living healthy and non-disabled in a war-torn country?

Who can really answer any of these questions? In the end, it's probably mostly up the the individual person living the experience as to whether their life is horrible or wonderful. Any opinions without experiences are just assumptions.

The one conclusion I can say for sure is that, for me, being alive is better than being dead. Yet others, perhaps those more religiously inclined than I, may have a different opinion on this matter. No one experience is more valid than the other. In the end—and I think this is something we all struggle with sometimes—if all the energy we spent on comparing different conditions as "better" or "worse" or "more deserving" or "less deserving" was spent realizing that all these people have struggles and need supports, just in different ways, the world as a whole might be a more inclusive and empowering place.

No comments:

Post a Comment