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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Thankful for so much; Today: Housecleaner

September 5, 2011


There’s a lot to be thankful for in my life.  I’ve spoken before about friends and about family.  Today I’m thankful for something simpler: my ability to pay a housecleaner.  Once each month, someone cleans my apartment for me.  For some people this sounds like an unimaginable luxury.  For others, once a month would never be enough.  For me, this has been a wonderful experience.

I am perfectly willing to live a less-than-spotless home (actually, I prefer it.)  What I am not willing to do is to spend entire weekend
days cleaning, then resting from said cleaning.  Scrubbing the tub can wipe me out for hours.  I can’t clean all of the floors in one day.  By the time I spend 4 Saturdays getting one part of the apartment clean, the rest is disgusting.  Instead, I can save my time, energy, and joints
by having someone else do all of this.  Having someone come more often might be nice, but since I live alone with no pets, and I’m not a total slob, once a month works, and it’s more affordable.  She is coming tomorrow with her group.  They will accomplish in a couple of hours what it would take me many Saturdays to achieve, and they definitely do it better than I would.

Could I spend the money on other things?  Yep.  Do I want to?  Nope!  Sure, I could eat out more, or put the money towards a trip.  There are so many things I could spend it on.  But for less than the cost of many cell phone plans, for less than what some people spend drinking each month, for less than a fancy meal, I never have to clean.  Ever.  At all.  Sure, I wash dishes between her visits, and wipe down kitchen counters.  I do not vacuum, clean floors, scrub the toilet, clean the tub, dust, or do any of those other exhausting, pain tasks.  I don’t miss it a bit.  Do I feel guilty?  Not at all.  Sure, I used to feel some middle class guilt, but I don’t any more.  She saves me pain and exhaustion.  I pay her in a down economy.  When I do the math, I come up with 2 winners and 0 losers.  Works for me!

As I said, I am so thankful for my ability to hire someone to clean my house.  And I’m grateful for the wonderful job she does.  I’m very excited for her visit tomorrow!


Germs: Prevention or Paranoia?

September 4, 2011

When your immune system isn’t what it should be, it’s extra important to avoid germs.  Well, obviously some germs are ok.  Some are even good for you.  But then there are certain viruses and bacteria that we need to avoid.  In the next month I’ll get my flu shot.  I wash my hands a lot.  Beyond there, how much more can I do?

When someone is clearly sick, I try to keep my distance.  I try not to get too close to a sick co-worker or friend.  When people seem to be healthy, I tend to assume that they are.  Sure, they could be carrying something, but I don’t want to be paranoid.

So that takes care of the black and white, but what about the gray?  What if a person was sick, and now they feel ok, but they’re still

coughing?  What if it’s one of those hacking coughs?  Is it ok if they were sick 2 weeks ago?  What if it was 2 days ago?  And then there are still trickier situations.  What if my friend is fine, but her kid is sick?  Obviously I’ll stay away from her kid, but should I still meet her for dinner?  Maybe going out is ok, but we shouldn’t hang out at my place, in case she’s carrying around some germs.  Or maybe that’s being overly cautious.

I don’t know what the answer is.  I know I caught a “cold” a few months ago.  My friend had it for about a week.  She didn’t miss work, just felt lousy.  She was asymptomatic when we had lunch together.  Even though we weren’t that close, didn’t hug, didn’t share food, I caught it.  I was sick for two weeks.  I missed five days of work.  I felt horrible.  My immune system just couldn’t seem to fight it off.  So I know I have to avoid colds.  But I can’t live in a bubble, either.  Where’s the balance?


How private is too private?

August 30, 2011

After 5 weeks of posting almost daily, suddenly there’s been silence.  Is it a coincidence that this happened when I moved to a new site?  Nope.

I was so excited for this move.  I immediately told two of the only people in my world who know that I write this blog, and asked them to share the link to the new site.  I should have been more specific, because one person shared the link with mutual friends who would of course figure out that I am the author.  One figured it out immediately and emailed me.  I was so upset, I was ready to shut down the site on the spot.  Luckily, a friend gave me some good advice, and I waited.

Now, I know I was a bit overly emotional from the Prednisone and Plaquenil and the resulting lack of sleep – who wouldn’t be?  Still, it went deeper than that.  I felt so exposed.  How would you feel if someone posted a naked picture of you up at work?  I might be ok with that, but I couldn’t handle this.  This was much more personal.  So I’ve been wondering, why is privacy so important to me?  And how private is too private?  What’s not private enough?

I’m always shaking my head at the fools who post very inappropriate things on the web for all to see, then are surprised when it reflects negatively on them.  If your personal web site has pictures of you drinking with friends and flipping a car, then sure, you might have trouble getting a job.  But this site isn’t like that.  This site is a place for me to vent my frustrations, and for others to find the comfort of seeing that others have similar experiences.  This site is constructive, not destructive.  Still, what I write is very personal, which is why I chose to set it up anonymously.

I always knew someone might figure out my identity at some point, but I didn’t expect it to happen to soon.  I’m starting to get used to the idea of these few people knowing, but I still can’t write under my own name.  My friends and family know about my illnesses, of course, and know many of my symptoms, but I keep a lot of the real, deep fears to myself.  We all have things we keep private.  I know I’m more private than most.  But am I too private?

I suppose there’s no real answer to this question.  I have to tell myself it’s ok to not know.  But I still wish I did.