Why…?

For quite a while, I’ve felt like I really don’t have a group of people that I can really call a core  ‘community’.   Yes, I’m a Christian, but   I am tolerant of others’ choices for their own lives, even if I don’t understand them, or in some situations have any interest in hearing about them ( I don’t want to hear about anybody’s sexual interests… not. my. business.).  I refuse to shun the person.   Why do I have to believe the same as some other human?  Just because they’re a pastor or Bible teacher doesn’t mean they got it right (just watch late night TV preachers… they cast a shadow of doubt on a LOT of Bible teachers, no matter what level.)   I do believe that many are good pastors… but I won’t support any preacher who cherry picks which people are worth their compassion and attempts to understand.  I won’t support any preacher who promotes intolerance.  God made us all.  Period.  And we’re all flawed. Period.  Not one of us is better than the other.  Why do Christians tolerate intolerance?  I don’t have to agree with someone to understand that the choices based on the free will GOD gave them is their prerogative- and it doesn’t have to be mine.  I don’t have to shun them.   I feel like  an outcast most of the time.  I feel shunned by the ‘shunners’.    Add to that that the country is going down the tubes, and I really don’t like most people.     Why do people insist on continuing to prove that they are best avoided?   Or simply say they’re  one thing, and then never back it up?

I haven’t been a regular church goer for a long time (work hours when I was working, then  medical issues that make being away from home for more than a brief time logistically difficult).   Now the folks who went to the church I grew up in will take THAT statement as the reason for all of my frustrations… but my personal faith in God/Jesus is  stronger than ever.  God is the only constant and hope I have.     I KNOW what it was like growing up in a  subculture of evangelicalism- and as a kid I loved going to church.  It was a great experience in the youth groups, choirs, and babysitting in the church nursery.  I truly loved it.  Since it was essentially my only source of social contact, there were no conflicts.  I was still ‘one of them’.  We all believed the same. For the most part.  My folks enjoyed a glass of wine now and then, and dad might have a beer (one) once in a while, where as many were convinced that even one drink was a sin (drunkeness is a sin… a social drink is not, imho).  But the ‘big stuff’ was all part of the church teaching.  Without any personal thought involved. Back then, it was just how things were.   I’m very thankful for a solid church upbringing (and the vast majority of my core beliefs are the same);  it was a consistent environment.  It just didn’t allow for exposure to the actual world as a whole.   I had no idea that things could even BE all that different among other people.

As a kid, it really didn’t matter to me what or who was out ‘in the real world’, since school and (figure) skating were my pretty much my only exposure to people who didn’t go to that church (there was the trip to Europe in the summer of 1977, where I first saw men openly holding hands while walking down the streets of Amsterdam, and hookers had storefront windows with literal red lights that glowed if they were ‘busy’).  It was a time period where society wasn’t as cruel as it is now, and the anonymity of the internet wasn’t even on the radar- so any criticizing, mocking, and name-calling was done in person, and ONLY among  very close friends- unless it was overt cruelty towards strangers.   I was a kid, so not really expected to know any different.  People were simply more decent.  The ‘don’t ask, don’t tell’ philosophy had little to do with anything related to sexual orientation in my world,  but included politics, money,  and religion when being amongst folks whose views weren’t already known.   Why did people find it OK to reject others as ‘the enemy’, when they don’t even know them, most of the time based on assumptions from one comment?

Well, then I grew up.  After nursing school, I moved 1200 miles away on my own to start out my life out from under the shadow of being “the principal’s kid”.  I was not only in a different state and overall culture, but was in a city that had  a huge variety of people whose demographic groups I’d never encountered.  The first cross-dresser I ever saw was at a Walgreen’s checkout.  He was buying the make-up for himself, which I hadn’t even thought happened ,   until he turned around and smiled politely at me with full face make-up (foundation, mascara, eyeliner, blush, lipstick).  I was gobsmacked !  Where in the world had I landed? Why does the church exclude simply informing the youth growing up about the various types of people in the world, and how best to show kindness?  Why don’t they teach about using one’s brain to determine if a situation is safe- and not just a blanket “help your neighbor”?   Though now, I’d guess that there is some exclusion clause to avoid anybody gay, who’s had an abortion, or is on food stamps.  Those issues seem to earn rejection without regard to the person who is struggling because of them.

I was also a young nurse during the early years of the AIDS crisis.  I’d never known anybody who was gay (that I knew of at the time- later on I found out differently).   Even church hadn’t really mentioned homosexuality much.  It was a ‘given’ that men loved women, and women loved men.   Women wore makeup, men shaved their faces, and things were supposed to be all “Leave It To Beaver”.  I knew the terms- polite and otherwise – for homosexuality and what it meant- but that was it.   I had no clue that even in my own family, that there were those who were ‘different’ (neither of the two I knew back then were ‘out’ at that time, then two more became known when I was much older).   I wouldn’t trade them for anything.  All four (known) are/were (one is no longer alive) stand-up folks, and simply a joy to be around.  Why shun an entire demographic group?  Were they not also created by God?

I have no idea how many gay men I took care of who had full-blown AIDS (“HIV positive” really didn’t happen without already being very ill… the disease wasn’t identified until various symptoms of full-blown AIDS had already developed; now, antiretroviral meds enable those with HIV to live much longer, and with a decent quality of life).  In the early years, HIV was an automatic death sentence.  There was no hope at all, like there is today.  Most of their families back then, and even their partners, had kicked them to the curb.  Families were ashamed, and partners were terrified to be associated with someone who had “it”.  But what I learned was that these human beings were going through horrific, long deaths, that left them just alive enough to realize they were never going to be OK, and that they’d been abandoned.  Why  shun those who need compassion?   I also learned about the dangers of stereotyping when an entire heterosexual family died from AIDS after the wife gave birth to the son, but needed a blood transfusion- with blood that wasn’t tested for the virus- then breastfed her son, and had normal sex with her husband.  All three died.  Nothing they did had them ‘in the closet’, or on anybody’s ‘judgement’ list.   I was beginning to understand that things weren’t always ‘this or that’, ‘black or white’, or even ‘because of’ assumptions.   All of these people had names and stories, and there simply wasn’t time or desire to judge or hate.  They needed compassion.  Why not just reach out to anybody who is hurting, without judging?

Why the contempt for those who need help?   There is an assumption that the majority of those on welfare are just bums. Why  choose to believe the worst?   It takes a LOT of hassles to get help !  And even then, it’s a sub-poverty existence.  I’ve been on disability since 2004, and until I was eligible for Medicare 2 YEARS after getting Social Security Disability (not the same as the private employer-based disability insurance I paid for when I was working), I  would have had to spend $2000 per MONTH before I was eligible for Medicaid benefits. Each month.  That would have meant no apartment, utilities, medications, food, etc…  So the government sets the income cut-offs for getting help  to exclude the majority of people who need help.    How does it make sense for someone who is medically disabled to not have access to medical care, including medications?    Why are only some people worth taking care of?   Would Christ look at someone who  is sick, hungry, naked, and/or homeless and kick them to the curb?   Not the Lord I learned about !  Remember the sheep and the goats?    There is some belief that people in this country are taken care of no matter what.  That is false !   People die here daily because they can’t afford medications or treatments.   And it’s not just cancer.   Why is that OK?

Why can’t we just disagree, and not be told “Oh, it’s no big deal” (well, to me it might be !), or “get over it” (why should I, when the person who told me this is still bitching about Obama, and called Mrs. Obama the ‘n’ word repeatedly- from her holy evangelical tower?).   Why can’t we just understand that everybody views things in different ways EVEN when we all believe in God (for those who do) ?    There isn’t just one ‘flavor’ of Christian !!  It’s a little like the four gospels- each author had a different viewpoint, but that doesn’t make any of them wrong !    Matthew was a tax collector.  Mark never actually heard Jesus, but followed Peter, and interpreted for him when needed.  Luke was a doctor.  There is no consensus as to who specifically  wrote the Gospel of John- as well as 1 John, 2 John, 3 John, and Revelations.   But all four loved the Lord.  Why is it so hard for Christians to understand – and tolerate- that the belief in Christ is so much more important than the specific  issues that are argued about?

Why has it all ended up like this?   And why does it seem like people would rather be nasty, or not understand that it’s OK not to agree on everything, even if we believe in the same God?   That one baffles me.   I’m just glad that God knows my heart- and those who judge me are really judging themselves.   I might not tow the evangelical rope any longer (I prefer ‘non-denominational’)  but I still believe in the same God of my childhood… and miss those who were part of it, but now seem to prefer to push people away.    Why is that so ‘bad’?   Why has it become so much more preferable to simply avoid humans?   Even (and sometimes especially) those who had been church ‘family’….  it all hurts my heart.  Mostly because they’re so unaware of how much it hurts to suddenly not be ‘good enough’ because I don’t mirror all of their rigid beliefs.

 

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What NOT To Say To Someone Who Is Disabled or Dealing With a Serious Illness

I think most people are trying to be helpful or supportive when they make comments to someone about their health and/or treatments, but there are some things that  those who have not experienced the situation should just stay quiet about.  Some things are just not helpful, and some are ‘enough’ to ruin a relationship.  These are some of my ‘just don’t say it’ things:

1.  “You look OK.”… to me, that means “there must not be anything wrong with her- she’s just a wimp and making a big deal out of nothing”.  You spend a day in my body, and get back to me.  Diabetes, seizures, neuropathy, chronic pain, migraines, degenerative joint and disc disease, and a multitude of other disorders have no outward symptoms that scream out their identity.  There is a fine line between “You look OK.” and “You look good”.  When “You look good” is said following a long fight with an illness or its treatments, and someone is ‘coming back’ to their ‘usual’ self, I never found that offensive.  It’s a totally different situation.  But “You look OK” = “buck up and get with the program, you sloth.”   Trust me.  I’ve tried the best I can, and managed to get 8 years more to work with the initial medications (once the right ones were figured out). Going on disability was NOT my idea.  My employer at the time told me they couldn’t have me around (go figure, I was passing out all the time).

2. “Your doctors sound like idiots.” (opinion usually based on the online ‘research’ that is mostly from sites that are trying to sell a product– and have an 800 number at the bottom of the page, and/or ‘proven’ by someone with a plumbing or agriculture background).   Many times, this is ‘pushing’ some sort of Eastern or alternative medicine instead of the treatments that have been researched and gone through trials, with proven success rates that are better than not having that particular medication or treatment for that specific problem.  I have no issue with alternative medications, and use homeopathic headache medication as well as herbs and supplements for headache prevention/ minimization … but I have run those past my doctors before taking them. I also use Western medications for the same problem.  While I was on chemo, I took NOTHING that my oncologist didn’t approve.  There were very specific things I couldn’t have because of the type of chemo I was on.  There was  a massage/aromatherapy person who came by every day I was in the hospital, so some alternative things were offered.  I’ve been offered various products/ideas to replace medications by well-meaning friends.  Here’s the thing- it’s my body.  I trust who I trust, and it’s not someone online I’ve never met.  It’s not someone who has never seen me or my test results.  It’s not someone who has no interest in me if I don’t buy their products. When I have decided to switch doctors, it was MY decision based on how I felt about the care I was getting.  And, I never trust anybody who has credit card acceptance comments and images at the bottom of their ‘professional’ page.

I must admit, I have been annoyed by doctors I’ve heard about and gone off the rails with my responses- but once discussing the situation with the person- and I more fully understood what was going on, all was well- and bottom line, I respected their gut feeling about what was going on.  🙂 But, nobody needs to hear that their doctors are idiots… they’re depending on those doctors to be sure they’re still going to have a normal lifespan.

3.  “You should/shouldn’t eat X, Y, or Z.”  During chemo, it could have been lethal to eat fresh fruits and vegetables that someone else didn’t peel, because of the microbes that can still be on them even after washing. Because of the immune system ‘attacks’ from chemo (and in the case of the leukemia I had, the cancer itself long before the chemo kicked in), there are times when an otherwise harmless ‘bug’ could cause a fatal infection. Produce is covered in ‘normal’ bacteria, fungi, spores, and viruses- a normal immune system handles them with no problem (they can’t all be washed off).   And when my absolute neutrophil count (ANC) was below a specific number, I couldn’t have any fresh unpeeled produce around (and wasn’t given permission to peel them myself even with a mask and gloves– the risk was just too great).  I’d already had a couple of nasty infections from otherwise puny things that caused delays in chemo and/or the need for extremely potent IV antibiotics for 5 straight weeks, or antivirals for 3 weeks (BAD ear/neck infection,  and shingles during the first year).  Normally, fresh produce is felt to help prevent certain cancers… but with chemo and the effects on the immune system, it is critical to not violate the food rules !  It’s all temporary.  Better to go with what is likely not to cause more problems !  When it’s not potentially lethal, then of course- fresh foods are the way to go 🙂  There was also a very strict ‘don’t eat’ on things with a lot of Vitamin A, since one of my primary chemo medications (ATRA) was essentially a form of Vitamin A in mega form.  Vitamin A is fat soluble, and can become toxic in the body since it builds up (so can E, D, and K).   I had very specific instructions about not eating Vitamin A ‘heavy’ foods (carrots were a particular ‘loss’).

4. “Oh, disability must be just like an early retirement!”  Seriously?  People think this is some sort of ‘perk’ ?  My life was taken from me in terms of everything I knew to be my normal life.  I still grieve the loss of being a  working RN.  I’m having to make 2/3 of my income ‘work’.  I can’t leave home without medical equipment.  I have 32 pills to take on a ‘good day’ when I don’t have to take anything for an ‘as needed’ situation.  I’ve had to deal with Medicaid (a joke- they don’t help much at all, and it’s humiliating to need it), Medicare (very expensive to be on), the Part D prescription plan (which limits my access to the best insulins due to cost), the legal system, with bankruptcy prior to Medicare (extremely shameful to have to do that), etc.  It’s been hell.  Yes, I have many things to be thankful for- but this is no picnic.  I’d much rather be doing 40 hours a week and being useful. Now, it hurts to make a sandwich or empty the dishwasher.

5.  “Well, when you finally feel like it, we can ______.”  Don’t hold your breath, sister !   “Chronic” and “disability” don’t mean this will run its course, and I’ll be fine.  How I wish !   “Degenerative” means I’m going to decline.  I’m the one who should be having more trouble accepting that- why is it that others just can’t grasp the concept that some things can’t be fixed?   Don’t make it sound like it’s somehow up to me for this to all go away.  Don’t make it sound like I’m just not trying hard enough. Don’t make it feel like this is my CHOICE !  When someone says ‘finally’ it implies that there’s something voluntary about all of this.  If there were, I’d be in a way different place, working, and living a ‘normal’ life.

I’m doing the best I can.  If I were physically able to do more than I can, I’d be doing it.  I feel fortunate to be able to take out the trash and not need 2 hours to recover.  I’m always glad when I get home from the grocery store, and didn’t have to stop unloading the car because I felt like I was going to pass out.   I’m adjusting the best way I know how, which is to try and be thankful for what I have left that I enjoy, and am glad that no matter what happens to me, I still have God.  Some people don’t understand that.  For me, He’s a lifeline. ❤