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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Wanting solid info from the RMV

September 7, 2011

It’s not like I want to have a handicapped placard.  I would like nothing better than to be healthy enough to not need one.  Since I do need the placard, I use it.  I just wish I knew more about the laws around it.

After a lot of searching, I finally found some info here and here on the MA RMV web site.  After all that searching, the site doesn’t inspire confidence.  For example, it provides information on handicapped plates, but when I tried to get one years ago, I was told they aren’t offered anymore, only placards are offered.  Either I was given wrong information, or the site is very out of date.  Both seem very possible.

Now, try finding info on where you can use it!  #7 in the FAQ seems to be the place, but it’s incredibly vague (and wrong.)  Can I use it in HP Van spaces if I don’t have a van?  It doesn’t mention that.  I can disregard some parking meters but not all – that’s NOT HELPFUL!  Why can the MA Port Authority manage to not exempt placards?  Do others do it too, or is it just them?  Please be specific!  And about all U.S. States recognizing the MA placard, well, maybe that should be more specific too.  Parts of Washington D.C. didn’t, the last time I was there.  I also stumbled upon a city in Connecticut this summer that didn’t recognize them.  Why is this?  And why doesn’t the web site mention it?  And according to the FAQ some parking rules must be followed but not others.  What if there’s a 2 hour parking limit?  Do I need to obey that?  If so, doesn’t that run counter-intuitive to the exempt meter rule?  If not, then say so!

I know many people who have had the same frustrations.  When I call to ask questions, I can’t seem to get someone on the phone who knows what they’re talking about.

These placards are provided by the state RMV.  Many rules apply to them.  Would it be so horrible to let us know what those rules are?

 

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Bodies going bezerk

September 6, 2011

Any day can be unpredictable when you’re dealing with an autoimmune disease, but some are worse than others.  My guess is that today’s problems are worse because of my meds, but it could be the conditions themselves, or the weather, or just randomness.  Who knows?  I sure don’t!

A dog accidentally scratched me the other day while we were played.  It left a mark, but didn’t break the skin or anything.  The next day, there was a small bruise.  Today there are 5 bruises, some large, and they’re blue and sensitive to touch!

Sunday night I got what I thought were 3 mosquito bites.  The next day there were at least twice as many.  Today there are even more!  Maybe they aren’t mosquito bites after all?  Maybe my body is telling me something?

And then last night pain set in, along with some swelling.  Great.  It hasn’t gone away yet.

I was doing ok a few days ago, and now my body is going haywire.  I don’t know what caused it.  I don’t know when it will go away.  In the meantime, I’m treating myself to a night of tv and unproductive web surfing.  Productivity can wait until I’m feeling better.  Tonight is about relaxing.