Where’s the compassion?

September 29, 2011

Arrrgh!!  Some days are just so frustrating!

A lot of life is frustrating of course.  Fighting traffic, pushing through crowds, dealing with less-than-helpful customer support services, and fighting with uncooperative computers a la Office Space are typical daily frustrations.  But today I’m talking about people.

More specifically, I’m talking about people who lack compassion.  One day I wasn’t able to walk, so a friend and I did some shopping with me in a wheelchair, her pushing it.  There was the sweet teenager who saw us coming and ran ahead to open a door.  But then there was the woman who told us we were being too slow and rudely pushed her way past us.  Nice, huh?  Well, this second one is the type I’m talking about today.

In the last few days I’ve been hearing too many things, directly and indirectly, that demonstrate how much some people lack compassion.  There was the woman who told me, while talking about my health, that my “reputation is the most important thing.”  There’s a friend who needs an incredibly simple accommodation at work, he brought in the medical documentation, and he’s being given the runaround by his employer.  And non-health-related, there’s the person whose office scheduled a mandatory meeting for yesterday, the start of  Jewish holiday, and then gave her a hard time for leaving early to prepare for the holiday.

In many ways our culture is one of me, me, me.  Sometimes I see people thinking about the good of their neighborhood, the good of their community, or the good of society in general.  That’s a start.  Less often, I see people who try to put themselves in the places of their friends, neighbors, and colleagues and who try to truly understand their wants and needs.  It’s a shame; I really believe this world would be a better place if we all did that from time to time.  Yes, that sounds a bit Pollyanna-ish, but I believe it.  When an elderly woman comes onto the train with a cane, give up your seat.  And when a healthy-looking 20-something asks for your seat, believe they have a good reason, and give it up with a smile.  It’s possible you’ll make someone’s day just a bit easier.

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How much do you know?

September 12, 2011

What’s the biggest outside influence on your health?  I’d argue it’s politics.

 

It’s easy to get a bit self-absorbed when you’re sick.  That’s fine to do occasionally.  Then when you want to reach out, you probably turn to family and friends, right?  That’s good too.  But I hope everyone takes some time to educate themselves on local, state, and federal politics, because they do affect you.

 

Massachusetts has a lot of potential ballot questions coming up next year.  Some will affect me more than others, and I don’t know which.  Some of the questions could be about medical marijuana, doctors prescribing life-ending drugs, and changes to state health insurance regulations.  I’m sure each of these will eventually have an effect on me or on someone I know.  What are the laws in your state?  Is anyone looking to change them?

 

I’m not suggesting a Big Brother role here, but politics affects all of us.  Some of us may end up on Social Security Disability Insurance one day.  Some of us may need to stop working and rely on food stamps.  If you’re reading this, I’m pretty sure that health insurance matters to you.  Of the many health insurance changes that could come about as a result of President Obama’s plan is stopping health insurance companies from excluding someone based on a preexisting medical condition.  That means I could get health insurance anywhere in the U.S.!  For someone reading this in Canada or Sweden, that may sound strange.  For anyone in the U.S. with a health issue, it sounds like a fantastic safety net.  We’ll still have to pay for it (unless you qualify for Medicaid) but at least we’ll have it!  And what about legalizing medical marijuana?  I know that’s controversial.  I also know that when I took some in California last year, it was the first time in years that I wasn’t queasy.  I could even eat without feeling queasy!  That was a fantastic feeling, and one I’d like to have again from time to time.

 

My point is simply that politics affects us all, whether we want it to or not, so we might as well get educated and learn what is about to have an influence on our lives.

 

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Religion and/or/with/versus Chronic Illness

September 9, 2011

I don’t give much thought to religion and its relationship with chronic illness anymore.  I suppose I used to, but that was a long time ago.  In fact, I’m only thinking about it now because I got an email today that it’s the topic of this week’s Chronic Babe blog carnival.  It’s an important topic, though, and like with most other things, I have very definite opinions about it, so even though this is less of a rant or a rave and more of a reflection, here goes….

Like most Americans, I was raised in a household with religion.  In our case, we were not devout.  We attended services on the major holidays, celebrated with family and friends, and occasionally, but not consistently, celebrated some minor holidays.  I attended religious school for many, many years, so I knew a lot about how things were supposed to work.  I knew the prayers, the customs, and the bible stories.  The problem was, I started doubting from a  young age.  When I was three, I asked the teacher at my religious preschool, “If god made the universe, then who made god?”  I was told not to ask that question.  I was told that god just was.  Maybe that was the right answer for some three-year-olds, but it wasn’t the right answer for me.  That started me doubting, and the doubts never went away.

So that’s my pre-illness religious background.  When I was 12, I still went to religious school, still went to services, still celebrated holidays.  I also now had some mysterious pain.  At 12, I really didn’t think too much about some higher being giving me the pain, and I never considered praying for a higher being to take the pain away.  Having never believed that a god of some sort controlled the minutia of my life, such as my friendships or my grades or whether or not I got a particular birthday gift, this seemed no different than anything else.  I celebrated the holidays in a cultural way, and I thought about G-O-D, but I didn’t know what exactly I believed.  I was scared not to believe (some of those bible stories are scary!) but I didn’t have that “feeling” that so many adults talked about.  When I said to myself, “Please make the pain go away!” I wasn’t praying to any being in particular.  I was putting words to the hope that I felt that maybe, someday, things would get better.  Maybe that’s all prayer is?  I don’t know.

Everything changed in college, as it so often does.  I was living on my own for the first time.  I went to services more, actually, at the beginning, because I felt a connection to the people there, and it reminded me of home.  After I while, I realized that I wasn’t going for the services anymore, I was going only for the people and for the community.  Over the years, I gave it more thought, and finally admitted to myself that I just don’t believe in any higher being. My guess is that illness or no illness, I never would have.   To me, the monotheistic god, the Greek gods, the ancient Egyptian gods, and the Flying Spaghetti Monster all seemed equally unlikely to exist.  Still, the illness gave me an interesting perspective.

On the one hand, why would I want to believe in a being that would make me ill?  Or in one that wouldn’t make me better?  I’m a good person.  I help others.  I volunteer at nonprofits.  I go out of my way for strangers.  Why would I want to believe in a being that would do this to me?

On the other hand, I see religious and spiritual people who take great comfort in their beliefs.  I am incredibly jealous of them.  I want that.  Who wouldn’t want that?  Going through the fear, uncertainty, and difficulties of chronic illness, how nice it must be to have a proactive course of action (praying) at your fingertips all the time.  How wonderful to have a community of strangers ready to step up for you.  How nice to have hope.  Of course I want that!  I want that, but I can’t manufacture beliefs for the convenience of a support network and what I think of as false hope.

It seems to me that most people either become much more religious or much less so after a big diagnosis (or the diagnosis of a loved one.)  As far as I can tell, this happens for the reasons I just gave: either they can’t stand to believe in a being that would do this to them, or they need to believe in a being that can cure them.

The answer is different for everyone.  My path has led me to where I am now.  Maybe one day my beliefs will change.  Maybe they won’t.  I think the important thing is to feel comfortable with where I am now.  Thankfully, I do.  I get frustrated when others try to force their religion on me, but that has little to do with my health, and more to do with their desire for proselytizing.  We all believe in different things.  Thirty years after preschool, I don’t believe in god.  But I’m excited to celebrate the holidays with my family!

 

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No, we’re not all the same

September 8, 2011

I saw a story on the news the other night about a woman who went to McDonald’s with her two autistic sons and their service dog.  The store manager was there (though not working at the time) and told the woman that the dog was not allowed because they weren’t blind.  The mother offered to provide documentation, but the manager insisted that they leave.

There’s more to this story, but I want to focus on the common misconception that only people who are visibly disabled would need a service dog.  Invisible disabilities can make life easier in some ways, because you can “pass” for healthy.  On the other hand, invisible disabilities mean that people often don’t believe you have a problem.  And visible disabilities that are misunderstood?  You’re out of luck there too.  We need more education.  We need people to understand that service dogs are for people who are blind, and also for those who are autistic or suffering from PTSD or who have epilepsy.  There are many many more reasons why someone would have a service dog.  People need ways to learn this.

When I was in elementary school, maybe around 4th grade, we had a program on disabilities.  Someone came in and spoke to us.  They taught us how to sign the alphabet, and we had to communicate with each other that way.  We were blindfolded and led through the hallways by a classmate, trusting them to guide us safely.  We had our dominant hand tied behind our back, then were told to write with the other hand.  We learned what to do if someone has an epileptic seizure in front of us and what to do if a diabetic needs insulin.  This was long before I had any health problems of my own, and as far as I knew, none of my friends or family had any problems either (I was wrong, but hey, I was a kid – what did I know?)  Still, I paid attention.  Obviously this program had a real affect on me, because I remember it all these years later.  Imagine what would happen if we offered programs like these in each grade, adjusting the material for each age group.  Imagine how much more understanding the next generation would be!

People make a lot of incorrect assumptions.  Sometimes the person is at fault, but very often they just lack the knowledge needed to make informed decisions.  Let’s help them by giving them the knowledge they need.  Let’s educate them!

 

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