Archive for the ‘introspective’ Category


A very important concept in fighting for Disability Rights is moving away from the Medical Model and towards the Social Model. Acceptance over a cure. Creating Universal Accessibility ideals that are helpful for everyone so that no one may be excluded.

To make it easier to understand I’ll give visuals:

This staircase is lovely, with a ramp built into it as an integral part of the architectural design.

The ramp is built into the architecture as art rather than an afterthought at Robson Square in Vancouver by Arthur Erickson

Robson Square in Vancouver by Arthur Erickson

 

 

 

 

 

 

 

 

 

 

This design below eliminates the staircase altogether in the form a beautiful circular, winding red ramp that everyone uses at the Ed Roberts Campus in Berkeley, California. It’s difficult to see from the photo below, but the doors are also wide and airy, and it’s reported that most visitors find this layout to be very warm and inviting.

Circular Ramp Ed Roberts Campus in Berkeley, Calif; example of Universal Design

 

 

 

 

 

 

 

 

 

The Greendale Villa near Disney World is known to be disability-friendly and uses Universal Design in its architecture. They even use it in their swimming pools.

Accessible Universal Swimming Pool at Greendale Villa in Fla.

Accessible Universal Swimming Pool at Greendale Villa in Fla.

 

 

 

 

 

 

 

 

 

 

The examples I gave are easy to understand because you can see them. They’re also easy to understand because they’re inclusive for people that have visible physical disabilities for people that use wheelchairs; parents using strollers or are holding a wobbly toddler by the hand; aging individuals or others who need a walker or a cane; people that have a cast on their leg and use crutches; a postal delivery person carrying or wheeling heavy packages; a student lugging around heavy books or an enormous art project; a caterer making a delicate delivery. The fact of the matter is that stairs are clumsy and difficult to navigate.

When it comes to the disabilities that you can’t see, the Universal Design within the Social Model is still not only an ideal, but a necessity. We’re not demanding that the world change to give disabled individuals “special treatment.” We’re hoping that the world will understand that a level playing field is the goal. We’re hoping that by showing care in being inclusive to all, people might start to figure out that disabled individuals are valuable and have as much to offer and contribute as anyone else does.

I see resistance to these ideas because I think some people believe that acceptance of disabilities means giving up, not trying, not caring, being willing to somehow not be enough of something. Human maybe? Even though disabled people are fully People, fully Human, no matter the disability. But for many people, the Social Model means that those who have disabilities have the audacity be disabled; to not hide the disabilities adequately enough to appear to have no disability at all or, worse, to not have overcome the disability or disabilities. The problem with resisting the Social Model is that the Social Model benefits EVERYONE. That’s how inclusion works. Funny, that.

Imagine these ramps that are inclusive of everyone as communication barriers that have been broken down for people that have mental health disabilities, developmental learning disorders, cognitive function disorders, traumatic brain injuries, intellectual disabilities, impaired vision, impaired hearing… and all of the other invisible disabilities that so many people forget about when it comes to universal designs.

It can be as simple as recognizing that there are multiple ways of communicating. Even a newborn baby can communicate through facial expressions, body language, different types of cries, different vocalizations, eye contact, and even how fast or slow they’re breathing. Someone that is classified as non-speaking and “incapable” of speech is still always capable of communicating.

So if you have someone that’s Autistic or has a speech delay and their parents have been told they’ll “never” speak because they seemingly aren’t verbal since they haven’t  (yet) communicated verbally, what do you think the assumption tends to be?

“My child can’t communicate and never will, and therefore they must be intellectually disabled.”

That sounds so dire, doesn’t it? I would bet my left butt cheek that their child uses body language, facial expressions, other sounds, or possibly even sign language of some sort to attempt to communicate. Pointing, shaking the head, refusal of performing a request and performing a different behavior instead… that’s all communication. It doesn’t mean that the child doesn’t understand what’s being said or asked; it simply means they need another way to communicate.

Hear this well: non-verbal learning disorders and delays don’t mean someone has an intellectual disability, or that they’re incompetent. While neurological disorders and other disabilities such as Autism and Non-verbal Learning Disorder and Sensory Processing Disorder and Cognitive Delays can co-occur, they are mutually exclusive of each other.

This means that you need to assume that your child or any other disabled individual you come across should be presumed to be competent. Presume they can hear you and understand you, and maybe even read. Maybe learn to use cards with images on them. Offer a computer keyboard or a tablet. See if your loved one enjoys drawing, painting, or a craft. Art is also communication. So is music. So is math. Everything someone does or doesn’t do is communication of some sort.

Disability does not make one less. It’s not something to be ashamed of. As someone with disabilities I’m not going to sugarcoat it and say that disabilities are fun and everyone should join me and have them. I’m not going to say that the challenges aren’t incredibly difficult, and that some obstacles don’t really seem impossible to ever overcome. I’m not going to say that it isn’t discouraging at times. Being disabled often sucks, but it doesn’t mean I’m miserable.

And that’s something else.

One big assumption about individuals that have disabilities that needs to disappear forever is that “being disabled means being miserable and life isn’t worth living.” That statement is a myth and it’s offensive. It’s why I found it heartbreaking, tragic, and ridiculous when people decided that Robin Williams’ suicide was understandable when they discovered it was so he wouldn’t have to progress with his disability rather than because it was part of his lifelong depression and, thus, “selfish” of him to commit suicide.

Life is more than worth living when one has one or more disabilities and it’s no one’s place to put value on someone’s life, to measure their worth or right to live or whether someone’s life is a tragedy based on the single fact that they have disabilities or make assumptions on someone’s suffering levels. Life is still worth being part of society, part of family and friends, and having society recognize that individuals who are disabled have just as much to contribute and deserve to earn a living wage, with voices and opinions that are strong.

Part of making society acceptable, part of the Social Model needs to be dispelling myths and incorrect stereotypes about disabilities in general, and disability-specific. For instance, individuals who are autistic are not “suffering with Autism” and nor are they emotionless. They are autistic. Very often, in my personal observations, it seems that autistic individuals are more sensitive to emotions and they most definitely aren’t suffering due to their Autism. The suffering occurs from the treatment of others who may be abusive and less understanding, less accepting, and being in environments that are not disability friendly. For instance, lights that are too bright and music that’s too loud in a store that can already be disconcerting makes the experience nearly impossible for some. It’s an assault on the senses.

There are movie theaters that now offer sensory friendly screenings of movies. They will advertise a specific movie with the times, locations, and accommodations being made: raised lights; reduced level of sound for the movie; allowing wandering during the showing within the theater itself; allowing talking; providing ESL interpreters; allowing carers such as PCA’s to accompany without having to pay additional fees.  Universal acceptance, Social Model.

Assimilating universal designs into our society is an acceptance that everyone of any ability is valuable and worthy of having access to anything and everything. It’s a recognition that everyone’s needs are different. It’s difficult when much of society isn’t just afraid of acknowledging disabilities, but disgusted by them. There is a lot of fear of being seen as different, as Other, because once someone sees you as disabled, you’re also seen as weak and incompetent. There are a lot of people who try to take advantage of that perceived weakness, and there are those who use their physical intimidation to put themselves in a powerful position and misuse it. It’s called bullying.

For me to accept my disabilities relating to Fibromyalgia, depression, anxiety is not giving in or giving up. It’s not accepting a suffocating, negative label. It gives me a name for the obstacles I have to cope with, and a starting point to learn. It means that while I accept my disabilities I can still do my best to help myself feel better. I may have some cognitive issues and massive physical pain that would bring down a horse, but I am not weak nor incompetent. I have strong opinions. I’m a self-advocate and I advocate for my children and others. It’s not easy for me to accept my particular disability because it’s physically and mentally taxing. It’s scary to realize that it’s going to progressively get worse. That just makes me work even harder to take care of myself.

By the same token, by accepting my daughter’s Autism, I’m not throwing her to the wolves and giving up her, drowning her with alphabet soup letters and labels. Discipline doesn’t go out the window. Education doesn’t get tossed in the wind. I’m helping her along with her sisters learn about who they are, what they’re going through, and working out the process with them. We’re learning together how to identify their strengths, talents, interests so that they can learn how to best communicate and what their best learning methods are.

Along the way, we’ve figured out which clothing can trigger negative behaviors. We’ve learned which ingredients in particular foods and drinks to avoid. We’ve learned what weather changes can do to health. We’ve learned how to adjust our thinking, our language, our expectations. We’ve learned that these things change and are fluid and that being flexible as parents and caregivers is simply the best approach.

In doing so, I’m trying to make the world more accessible for her. I’m letting her be who she is without trying to change her. I’m not trying to make her “pass” for neuro-typical or, as those of us who are non-autistic are sometimes called by some people in the Autistic Self-Advocate Movement, Allistic. I’d like her to know that she can change her world. She does need to learn how the “Allistic” world works so that she can navigate it, but whether she ever appears to be like her non-autistic peers isn’t really on our radar.

Would you like to know why? Because I don’t want her to grow up believing that Autism is something she has to overcome or that she has to try to cover up in order to make other people feel more comfortable. She should never have to feel like she has to overcome herself or something that is such a major part of what makes her who she is at her core. Her pride in who she is should be empowering for her.

I see the discomfort people feel when they see my cane, see my pain, and they don’t know what to say. I see it in the faces of people who haven’t seen me in a long time and see me now, or those who just can’t get used to seeing me with the cane. That used to make me feel bad, and as if I had to apologize for it. Then I realized that I shouldn’t have to apologize for having a disability. The discomfort of others regarding my disability or them realizing my daughter has a disability isn’t my problem to work out. It’s up to them to figure out how to accept it and make it part of their reality. Maybe I’m not entirely comfortable with my own disabilities, and that’s okay because I’m learning and it’s a process. I go back and forth between accepting it and not… but as someone who is a do-er I tend to lean towards accepting and moving along so that I can find the new path.

It starts in the classrooms, and I’m hoping that these inclusive classrooms are encouraging children to bring their acceptance and generosity of spirit home to their families. If that happens, their parents bring it to work and it spreads.

We’ve learned that neurology is diverse and that they don’t need, or want, a cure. I’ve heard the words come from Sweet Girl’s mouth herself. She just wants to be accepted for who she is.She embraces her Autism and wants to be accepted. That’s all any of my girls want regardless of their neurology. They are not weak nor incompetent. They are not damaged.

We just need a pool that we can ease into rather than having to jump into all at once.

They Don’t Want an Autism Cure – The Daily Beast.

Read Full Post »


image

As a non-autistic mom to an autistic daughter, addressing the whole MMR Debate is probably the right thing to do right around now.  This is not a scientific, going to provide documentation and other specific proof sort of post because I’m not in the mood.  I’ve done it before and if you’re interested, there’s a link at the bottom to some of the things I’ll be referencing.  Plus I have a search tool on my blog.  And it’s my blog so I can include and exclude what I want.  I don’t get paid for this blog.  Ha.

The reason I’m addressing this now is because, of course, Measles is in the news nearly every day lately due to what started out as an outbreak that began in Disneyland.  To keep it simple: unvaccinated individuals that actively had or were incubating Measles went to the amusement park and passed it along to other individuals, some of whom were vaccinated with MMR and the majority who weren’t.  Of course the whole thing branches out from there and it’s getting bigger by the week.

Before I offer any opinion on this, which you can probably guess if you’re a regular reader, I need to get this out there:

Autism is not damage.  

It’s not damage caused by vaccines nor birth accidents nor “bad genetics.”  

It’s a difference in biology that creates a difference in neurology due to genetics.  

As a child grows, the autistic traits become more noticeable.  As a child grows, there may be things in the environment that trigger the traits that non-autistic people consider to be negative to occur more prominently and that’s why they’re called Environmental Factors.  

Most people don’t seem to know what that means.  They think Environmental Factors means “pollution, water quality, and food quality.” That’s only a partial truth.

From the WHO (World Health Organization):

Environmental health comprises those aspects of human health, including quality of life, that are determined by physical, chemical, biological, social and psychosocial factors in the environment.

I was going to say something really insulting and cutting about being anti-vax when someone is perfectly healthy but doesn’t care or understand a wit about social responsibility, but I’ll refrain.  

I was going to say something that had the word “rage” in it but I realized I don’t feel rage.  I feel pity.  

Ok, maybe a little rage.  I feel rage because people who don’t have the intelligence to at least state that they’re anti-vax because they “researched ingredients” even if they don’t know what that really means, don’t really know how to interpret what they find nor know which resources are reliable.

I feel rage because there are still people whose default position is “BUT AUTISM!” because THOSE individuals didn’t bother to find out the facts.  

Or maybe these groups? they chose to ignore the facts.  They choose the paranoid path that “they” give us limited information that’s not true. They think pro-vaccination standpoint is uneducated and misled.

There are some from both groups, of course, who willfully ignore actual science that’s been peer reviewed and completed by independent scientists who have no stake in the matter except finding the truth… who lose money for their efforts and aren’t affiliated with pharmaceutical enterprises.

There are those who can’t tell the difference between science and pseudoscience … and those who can but prefer the fringe and discredited pseudoscience.

There are those with “my opinion and my psychic say so” when faced with irrefutable facts and who will twist anything around to mean the opposite of what they actually mean to the point of accusing chemical biologists of making things up and being part of some “team” trying to control the masses by feeding misinformation intentionally.

Yeah.  That happened just today.

OF NOTE: Never, ever read the comments underneath articles.  No matter your viewpoint or opinion, just don’t read the comments.

I wrote this other post 4 1/2 years ago: 

Win For Autism Community: Andrew Wakefield Lost License | Ever So Gently.

It’s even more important now because this individual, this purveyor of deceit (Wakefield) is being held up as a misunderstood man whose honest research is being twisted and lied about. It’s not.

I was so full of hope in the ability of our society to bounce back from something that was damaging to the Autism Community worldwide and now it’s even more evident that it’s damaging to ALL individuals in the world who may ever become ill from vaccine-preventable communicable diseases… that are healthy and able to be vaccinated.

My faith in people in general and yes, particular individuals, isn’t nearly so high any longer.

I think it’s important that people keep the details fresh regarding what Andrew Wakefield did: he knowingly, intentionally, and willingly perpetuated a hoax regarding the MMR vaccine by falsifying a study and a paper that would earn him fame and legitimacy in the scientific community.

Let me phrase that another way.

The MMR-Autism paper written by Wakefield was without question proven dozens of times over to be fraudulent.  He committed a worldwide FRAUD and hoax by intention.  On purpose.  For fame and notoriety.  For the money that some people think doctors and pharmaceutical companies and scientists are “in it all” for. The people who use words like Big Pharma and think eating and living without doctors or medicine or “chemicals” will prevent any illness and block all communicable diseases.

Know this: Wakefield is reviled in the scientific community because he tried to pass himself off as a legitimate scientist.  This wasn’t some misunderstood poor doctor trying to help the world see that the MMR is harmful to neurology or gastroenterology for the majority of the population or even a significant segment.  

He wasn’t viewed as legitimate prior to the Lancet posting that harmful, damaging, ridiculous paper and wasn’t … ISN’T viewed as legitimate by the science community afterward.  The editor at the Lancet at that time didn’t catch that they had previously refused his other paper/s on other subjects that were ALSO FALSIFIED because they were in dire financial straits and needed to publish something.  It was simply bad timing that Wakefield (I can still barely type his name without wanting to disinfect my fingers and keyboard) submitted that horrifyingly damaging paper. Within the past 2 years the Lancet retracted that paper and apologized.

All that said:

There needs to be a dialogue about Vaccine Safety.  If there’s anything this entire debacle has shown the United States this is true.  

I’ve always been of the state of mind that we need to know what medicines we’re giving our children, why we’re giving them, how they’ll affect our children, how necessary they are, and the efficacy.  

I’ve always believed that even if parents make ridiculous choices we ARE entitled to choose how we parent.  

We need to get more people to figure out that short term side effects are not vaccine injuries.  

We need to get people to figure out that correlation of timeframe and other events is not causation.  

That opinion is not fact.

In regards to vaccines, I would not liken them to pulling a trigger on a gun if we do inject our children or if we don’t by risking them to highly communicable diseases unnecessarily.  I detest that comparison when either the pro or anti sides use it. The fact is that vaccine injury and allergies exist but in a miniscule segment of the population. The personal stories people tell make it appear like a lot but personal interpretation leaves a lot of room for misinterpretation and exaggerations in retelling.

However: When we demand that The Government steps in to legislate and compel people to have medical procedures done, to take medicines we would otherwise refuse, we are going down a slippery slope.  We are giving away freedoms that once we give them away will be nearly impossible to get back.  It becomes easier and easier to give more and more freedoms away.

And when we legislate medical procedures and medicine, we’re infringing very closely on causing harm to individuals who literally medically would die if they were forced to undergo what the majority of the population would be safe with.  We would be forcing a need for them to waste precious time and money litigating their way out of medical procedures.  We have enough of that occurring already with disabled individuals that we presume are incompetent because “we know better.”

I think it’s one of the most important conversations that we can have with each other.  

I’ll be honest, though… the instant someone says “Big Pharma” they’ve lost all credibility and all I hear after that is “blah blah blah invalid paranoia blah.”  

As soon as someone automatically and broadly tells me that science, scientists and doctors are all in on some enormous worldwide conspiracy with The Government/s to make us all sick and give us cancer in order to make money and control us, they’ve lost all credibility.  

As soon as someone tells me that I simply haven’t done the “right” research, and that their propaganda with pseudoscience and their wacky holistic family practitioner who thinks catching moonlight in a GMO-free poison ivy leaf bowl is good medicine is a great scientific resource and their web site should be “looked into” they’re no longer credible.

When I’m told that their opinions are more educated and valuable than peer reviewed scientific research that has been supported repeatedly… well you get the idea.

I think that dialogue mainly needs to occur with our doctors regularly. I think our nation needs to stop being afraid of education and science.  

Living a paranoid life sucks. The MMR Debate and Vaccine Versus Autism Debate are NOT the ways to go about discussing Vaccine Safety.  If you want to debate MMR and its veracity, don’t ever attach Autism to it.  

First and foremost this is because while Autism might be a difficult neurological difference for individuals to live with (not the parents, the individuals themselves) causing them various disabilities of varying degrees at various times, Autism is not a tragedy.  Ever.  It is not a vaccine injury.  It is not damage.

I’m really tired at the moment, so I’m sure I’ve missed a lot that I wanted to address and probably didn’t say all of what I wanted to very eloquently or with as few words as I should have.  Or, you know, succinctly.  :-)

Edited for grammar. ♡

Read Full Post »


This morning… bright, sunny, and cold… I saw a white Winter rabbit.  I’ve never seen her before.  Usually I see brown or grey rabbits in my yard, as my yard tends to enjoy heavy rabbit traffic.  We even have a rabbit hole or two.

This rabbit was special.  She was so white she almost glowed against the drab dying grass as we near Winter on the calendar.  She was round, pure white, full grown, nibbling at something, and although there’s plenty of noise on my street due to construction workers and equipment replacing a water main she seemed happy and calm.  She wasn’t skittish even though I’m certain she was aware of her surroundings.

Seeing The White Rabbit felt like everything stopped for a moment.  The background noise of the construction seemed to muffle.  I felt more aware of the sun’s insistence on continuing to rise higher in the morning sky.  My breath caught in my throat and my heart started to beat faster.  I remembered a prayer I made, asking God to help alleviate my pain, help me control my anxiety and the creeping White Tiger of depression.  I remembered asking God to help ease some of the fears and lift the heaviness of burdens… not to remove those burdens but simply to help me carry them without the oppressing weight and near-suffocation.  I asked for him to send me a sign that he heard me.

I just know that The White Rabbit is God touching my morning.   Maybe she could chase away the White Tiger.

You can skip this paragraph if you like because I’m about to take the long way ’round.  Now, I’m really not superstitious.  I believe in God, I believe in Jesus and the Holy Spirit.  I’ve blogged through my spiritual journey and occasionally share my thoughts.   I believe that the core faith is my path, politics be damned, and that it’s the best path, and yes the correct path or I wouldn’t have chosen it.  As a default in being a more, mmm, progressive Catholic I tend to lean away from believing in things like totems, animism, polytheism, and the like.  I don’t judge anyone who does believe those things; they’re just not my thing.

My point, after the long way ’round, is that I don’t believe this was a totem or spirit animal even with Native American and First Nation (indigenous/native Canadians) in my family tree.  I suppose it’s possible, but not likely in my mind.

This is why my White Rabbit feels like God sent her to touch my morning as a sign that he heard my prayer. It felt ethereal, and very similar to past events in my life that felt as my own personal proof of God in my life.  I can’t explain it if you haven’t experienced it although maybe in a future post I might.  I have a few stories you might enjoy.

So I did some research online.  I thought it might be fun just to see what white rabbits mean as signs in my Native heritage and in other cultures.  I found something unexpected, but it feels like reinforcement that The White Rabbit, MY White Rabbit was meant specifically for me.

“If Rabbit has hopped into your life:

Reminds us to examine and utilize the tools we have within ourselves. Although our instincts are innate, they also need nurturing and development. Rabbit meanings deal primarily with abundance, comfort, and vulnerability. Traditionally, rabbits are associated with fertility, sentiment, desire, and procreation.

It may also indicate a need for more planning or to check those plans already set in motion. Do not box yourself in a corner. Be aware that you may also need to examine the kinds of foods you eat. Perhaps a vegetarian diet, if only for a short time, can help you strengthen and heal.”

via Rabbit – A Message from one of our Spirit Animals.

 

I connected with The White Rabbit for a reason.

I realize this sounds somewhat, mmm, fantastical and probably delusional and even superstitious.  That’s ok.  However this happened, even if it’s pure chance, it felt important and needed.  That feeling, and the emotions associated during the brief encounter were validated for me.  My prayer was validated.  And I can’t imagine anything more important right now.

God is love.

 

 

P.S. This was my prayer:

 

Dear God,

I’m having a bit of a hard time lately.  I need your help.  My physical pain is higher than usual, and I think it’s my new normal.  It’s increasing my anxiety and ability to cope with everyday tasks and burdens.  Please send your Holy Spirit to ease the pain, and ease the burdens so that I might continue to carry them and follow through with tasks and participating in life events.  Please help me so that I don’t let my loved ones down.  If you read my blog, God, you know about my White Tiger.  Please keep her at bay.  She’s getting too close to me.  Please, please let me know you’ve heard me.  I don’t usually ask for a sign, You know that, but this time you also know that this control freak needs to know that she’ll get through it all.

Thank you.  You’re awesome and I love you.

Amen.

Jessica

Read Full Post »


Today I am very grateful for:

 

  1. My daughters
  2. My husband
  3. My mom.  Totally my mom.
  4. My three dearest and best lifelong friends, who no matter how long it is in between talks or visits, it’s as if it was just a weekend ago; they’re the most forgiving, loving, generous people I’ve ever met
  5. The best office mate ever, who has become another one of my very best friends… and as important to me as my left leg :)
  6. My boss, who I also count as a dear friend and is one of the most inspiring and understanding people I’ve ever met, and I consider my life better for knowing her
  7. My sweet cats, who always know when I need a purry snuggle
  8. Great neighbors
  9. Box fans
  10. My daughters would want me to say “air conditioners” so: “Air Conditioners”
  11. Fresh mozzarella
  12. Avocados
  13. Iced coffee
  14. Iced tea (yes, they each have their own wonderful, separate, delicious qualities so they each deserve their own entry)
  15. Daily pain management
  16. Being able to order pretty, stylish plus sized tops and dresses on Amazon
  17. My Kindle… seriously, so many benefits I can’t even count
  18. Having a working car
  19. Having a cell phone
  20. Paper towels
  21. A working shower
  22. A working washer and dryer, especially since right now our dishwasher is dead, dead, dead
  23. A day off with my youngest girl even though I really, really need to be at work
  24. The fact that it’s beautiful and sunny today after the days of rain and terrible barometric pressure
  25. Did I say my Kindle?
  26. Common sense
  27. Kitty nail clippers
  28. Blue kitty kibble, especially since it’s helping Luna get healthier and healthier skin on her paws every day
  29. Having a good job
  30. Doctors that care about my health
  31. CHEESECAKE
  32. Volume control, especially the mute button, for the TV
  33. Chocolate
  34. Salted caramel, especially the salted caramel core from Ben & Jerry’s
  35. The camera in my phone and upload-ability to FB and when I remember, Instagram

Read Full Post »


Source: https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&docid=NuIqSZjxBauA8M&tbnid=S6HgtM3YkTX2-M:&ved=0CAQQjhw&url=http%3A%2F%2Fhittingthewall.paulglover.net%2F20130509-fibromyalgia-awarness-day-2013-show-someone-in-pain-you-love-them%2F&ei=QSgwU-n5OcK0yAGF8oGwCA&bvm=bv.62922401,d.b2I&psig=AFQjCNEOFLYng877JZKQ1bt8jREYuBaWug&ust=1395751334502767

Fibromyalgia Awareness: Pain Flare Up

I’ve been working my way through what feels like an endless flare and as each day goes by, it seems harder and harder to get through.  Of course I still get up each day and as each individual day goes by, the day is harder to get through.  It’s par for the course, really, but this has been a really long flare that’s been going on for well over a month.  I’ve had mini-flares within the flare.  Weekends let me know just how badly I’m really taking care of myself during the week by slamming me with the CFS.  I wish I could give in to it, but 3/4 of the time I really can’t.  When I do, it’s sweet heaven and drifting into sleep, pained as it is, gives me the only relief I can get sometimes.  I’m still on a half dose of my Fibro med and have about seven days left on it before I can titrate up.

But now? During this past week specifically? The CFS is starting to kick in during the week.  I’m having worse trouble in the mornings not just getting up out of bed (that’s always a given) but waking and shaking off the grogginess.  I’m afraid it won’t be long before I can’t hear the blaring alarm that’s next to my head nor feel the vibrating phone alarm under my pillow.  I’m feeling the CFS at work now.  I’ve been successful in shaking it off at work, but I’m worrying about reaching a point where I can’t shake it off so that I might not be able to drive home. I already keep my cane close by and use it frequently.  During my flares I use it nearly constantly.  My balance is much worse; I can fall over out of nowhere for no reason; my sciatica gives me bursts of searing pain and completely goes out on me; I get other back pain and myofascial pain and other random pain that requires the support of the cane so that it helps ease things.

I was out at the store a week or so ago to run an errand and a lady came up to me to tell me that she used to use the same cane.  It’s purple with colorful flowers all over it.  I thought she was coming over to be nice.  Then she said,

“I was at a therapy session one day and my physical therapist saw my cane and asked me why I used it.  I told him why and his response to me was to throw it away and just stop using it.  And do you know he was right? It was the best thing I ever did.  You should do the same thing! It will be the best thing you ever do! You’re too young to use a cane!”

The smile that I’d had on my face must have faded instantly and I must have had daggers suddenly shooting out of my eyes, because the smile she had been showering me with faltered.

“That’s so nice for you.  I don’t suppose you have Fibromyalgia like I do.  I wish I could just throw away my cane.  I’ve done physical therapy but it not only didn’t work, it made my chronic pain disorder worse.  The cane helps me relieve some of the pain, but without the cane I wouldn’t be able to rely on my balance and I would fall more often.” 

Then I saw a light bulb.  I had been afraid I would see a slack jaw.

“Ah, I have a friend that has Fibromyalgia.  My mom, God bless her, had it too.  I understand.  Bless you.”

Then her smile returned and I felt at ease again enough to return her smile.  As I continued shopping I started to feel a different kind of unease and my frustration returned because I kept turning that incident over and over in my mind.  As I’ve gone over the past week (or more) I’ve continued to think about it.  I’ve been trying to figure out why it continues to nag at me.  It’s more than the immediately apparent unsolicited advice.  It’s more than the rampant incorrect assumptions being dumped all over me in that exchange that lasted all of 3-5 minutes.  It’s more than how quickly a seemingly positive random interaction soured.

Then throughout the past week or so, I found that I was paying more attention to how people respond when they realize I’m using a cane or I’m in visible pain.  When they can “see” my invisible disability by proof of the cane they’re very polite and smile and will give way.  People sometimes will offer to give me their place in line if they see I have fewer items in my cart/basket.  People are even more compassionate if I have my girls with me and they’re on their best behavior with me.  If I’m feeling tired and I’m sure it’s on my face, again, people are even more compassionate.  If I’m moving slowly, carefully, and purposefully, people are kinder and gentle.

But only if I’m smiling.  Only if I don’t let the pain visibly show too much in my face and posture.  Only if I can manage to control vocalizing unexpected bursts of severe pain that take my breath away.  Because if I’m not smiling… if I look like I’m ready to cry… if people can see just how much pain I’m in and maybe even hear it then the discomfort is palpable.

As it turns out, my pain and discomfort and feelings of sickness due to the pain aren’t really about me.  Of course not, why would my disability be about me? The things I go through are about everyone else.  I’ve always known this on some level, but I didn’t realize until recently just how much.

I can’t just deal with my pain and try to get through it.  I have to help others through my pain as I’m trying to cope with it myself.  I have to reassure them and explain it to them.  Until I thought about it, and thought about specific recent incidents in a new way, I didn’t realize just how much effort it takes to put up the appearance that my pain isn’t nearly as bad as it is even when it’s so bad that I can’t hide it and it breaks through and takes my breath away and I shriek.   I realized that I could not only see the discomfort others feel over my pain but that I was actively pushing against it trying to care-take others’ feelings and worries about my obvious pain… even strangers.

I reassure people that I am, in fact, all right (fine, even) and “this is normal for me.”  Because somehow, if “it’s normal for me” then I must be used to it and I must have a high pain tolerance.  I do have a high pain tolerance, but come on.  Pain is pain.  Severe pain is severe pain.

People will ask with fear, “Are you all right?” and I can tell that they’re hoping I’m going to minimize the situation, brush it off for them.  It’s rare that I tell the truth about how bad it is.  It’s par for the course.  It’s my normal, yes, and I have to get used it.  I have to endure it. Even when my baseline pain increases, I just have to get used to it.

I have to say I’m fine because it’s expected.  No one wants to hear the details of pain or what Fibromyalgia is like or what it means for my life and my family.  No one wants to know what struggle it is for you to even be standing up right in that moment.  You suddenly feel like you’re that elderly relative that’s asked how they’re doing and they give you the laundry list of every single ache, pain, illness, bowel movement, skin tag removal, kidney stone, colonoscopy, and family gossip because you see That Look come over the other person that lets you know they just don’t want to hear it.

Except I’m not really all right. I just can’t let anyone know how “not all right” I am because pain like this? Nonstop, constant, chronic pain that has severe flare ups? It’s taboo.  I’m not really supposed to say, “No, I’m not all right.”  If I say that then that implies, apparently, that I have expectations of other people to actually physically or verbally or emotionally help me and I shouldn’t impose that on people when it’s not their business and they don’t know what to do.

Maybe that’s what’s most uncomfortable for other people.  It’s uncomfortable because they don’t know how to make it better (they don’t have to make it better), they don’t know what to say or do, they don’t know what’s appropriate because there’s no rule book.  If someone else’s pain can’t be easily soothed because it’s more than surface pain (or what I call Less-Than-Labor-Pain Pain or for men to relate, Less-Than-Kidney-Stones-Stuck-In-Your-Urethra-Pain Pain that never, ever stops) this “look” comes over someone’s face.  This look that says my pain is not only uncomfortable emotionally for them but it’s an inconvenience.  I’ve put them into a position where they have no choice but to think about and deal with something that they haven’t ever had to think about before.  I’ve put them into a position where they can’t actually help.  I’ve put them into a position where they have to witness someone else’s pain and discomfort and yes, agony, and they don’t know the right thing to do.

 

What’s right is:

  • Please, try not to make someone else’s disability be about you
  • Please remember that those of us who have chronic pain are not lazy or making it up
  • Please don’t judge us as drug seekers… we are trying to relieve pain that causes many people to commit suicide; and if we are on pain relieving medications, don’t assume that we’re addicts.  If the medications work in some manner then they’re doing their job
  • Please remember that we are not intentionally inconveniencing you no matter how frustrated and annoyed you may feel over our pain
  • Please understand that we are not choosing this and if we had the choice we would make it stop forever and ever, Amen
  • Please know that without a doubt, we have tried every natural non-narcotic remedy that we can think of because we are desperately afraid of the mere whiff of appearing to be a drug seeking narcotics addict even if the pain relief medication/s we take are not narcotics nor addictive
  • Please remember that as uncomfortable as you are about someone else’s chronic severe pain, that other person is far more uncomfortable than you are 24/7
  • Please treat people with respect… not just people that have disabilities, but all people and that way when you see someone that has a disability you don’t have to wonder how you’re supposed to treat them
  • Please don’t apologize
  • Please don’t assume that you’re required to help unless we ask you, but we always appreciate heartfelt offers of help
  • Please be compassionate

 

Do I sound bitter? My apologies.  This flare up over the past nearly-two full months is having an effect on me that’s not pretty.  I’ve had ever-increasingly worse CFS due to the pain.  I think I said that already.  Fibro Fog is sort of chucking me on the chin here.  It’s easy to tire because the pain comes on so badly that all my body wants to do is attempt to sleep in order to escape.  Soon I’ll be allowed to titrate up from the lowest dose of the medication I’m on, which should help, so I pray that my insurance won’t take the stance that I’m a drug-seeking addict even though my prescription isn’t for a narcotic.  You know, because they’re idiots.

After all, I have laundry to do.

Read Full Post »


3rd quarter of 16th century

3rd quarter of 16th century (Photo credit: Wikipedia)

Jesus was a really nice guy who gave us lots of inspirational things to do to improve our relationship with God.  That’s the really short story about Jesus.  The longer story is that he was also sort of a political anarchist, socialist, Rabbi, religious-questioning, upheaval causing, strong willed, strong tempered, advocating, free-health-care giving, free-food-giving, carpenter from a quiet family of carpenters and Rabbis whose mom had to marry a cousin from the other side of the family so she wouldn’t be stoned to death for carrying the Son of God.

Whew.

Being the kind of guy Jesus was, I think that even though he “handed the keys” over to St. Peter I often wonder if he has questioned that decision every day since.

Oh don’t worry, people, I’m still a devout Catholic.  But I tow the more tolerant Catholic line.  I believe in what feels more Catholic than what the common traditional misinterpretations of the Bible tout.  I love gays and lesbians.  I’m a registered Democrat.  I’m liberal with some conservative leanings.   I think the current Republican ideology is repugnant and morally corrupt.

Due to some issues that have cropped up in the past few years, this is an issue I’ve been doing a lot of thinking and research on.  I don’t have all of my sources handy but most of them overlap.  I’m borrowing a lot of phrases from a lot of different sources because I just don’t have the links any longer.  Spiritual abuse.  Abuse by church leaders and other people of faith.  It’s actually a huge issue.  It’s a painful issue.  It’s damaging to one’s soul, heart, and relationships.  Unfortunately, most people that engage in the abusing don’t even realize that they’re being abusive.   Often times they’re even abusing themselves.  The saddest part is that it’s often inflicted on children and other family members.  Therefore, the abuse is overlooked or downplayed or simply  not recognized because hey, they’re behaving the way they are out of love, right? And besides that, when claiming that what they’re doing is for God that justifies a whole lot of sins.

Spiritual abuse isn’t usually intended to hurt other people.  Many people do it and, as mentioned, they don’t even realize what they’re doing as being harmful.  After all how can one claim an expression of a relationship with God to be wrong? How can one claim that a system set up to help people spiritually might be harmful?

Do you know how to tell when someone is spiritually abusing someone else? These are some signs as agreed upon in the Catholic Church and across Christian denominations.  There are certain people who need to pay attention to this and check their own attitudes and behaviors to figure out if they’re perpetuating spiritual abuse.  Unfortunately, those who need to see this and see themselves in this post the most won’t.

  • When you believe that a church leader’s words have such great weight that you make yourself vulnerable to them and believe that the leader is more knowledgeable in the faith than you are then you might also believe that the church leader is more important and their words carry more weight, their opinions carry more weight, and therefore what they say is taken as gospel (so to speak).  A loss of your own willingness and ability to think for yourself and utter submissiveness to a church leader rather than to the true gospel, rather than to God, is a sign of being spiritually abused. Willingly giving in and giving yourself up to this knowingly… is willful ignorance.  It goes against Jesus’ direct teachings.
  • When the focus gets subtly changed from being about someone’s emotions to being about the person or their state of being it’s abusive. When the “point” is about having to live up to some standard or else be labeled negatively and even being told that their spiritual relationship with God is being questioned, that’s spiritual abuse.  For instance, to tell someone that they’re “not Catholic enough” or “a cafeteria Catholic” is spiritual abuse because you’re telling that person that they’re not living up to some standard set of beliefs and behaviors established by other humans rather than focusing on their feelings about God and their relationship with God.  So if you hear someone say, “If you don’t attend church every single week and attend Reconciliation every month, then you’re not a true Catholic” that’s spiritual abuse.  If you someone tells you, “If you don’t believe that gay marriage is wrong then you’re going against God” then that’s spiritual abuse.
  • When one is told that it’s unacceptable to question an “authority” (either a church leader or someone who considers themselves educated in the church or a theologian) because somehow, that person is above questioning.  People or that person being held in high esteem may even be believed to be “above error.”  Questioning church authorities labels you as wrong and rebellious and sinful.  This goes against Jesus’ very own teachings directly from the Bible.  He taught us to question EVERYTHING including and especially so-called church authorities.  Questioning church leaders and supposed authorities and supposed educated religious people of faith should not and does not make you wrong.  A leader’s position does not make their opinions on spirituality superior.  People are not to ever neglect their own needs in favor of what the supposed authority states is more important.  To inform others otherwise and insist upon it is spiritual abuse.  Church leaders ARE FALLIBLE.
  • If a spiritual leader tells you to treat what he has said “as if Christ himself said it” then it’s spiritual abuse.  NO MAN ON EARTH ought to be treated as if he were Jesus Christ speaking.  So the Pope is supposed to be infallible when he’s on the chair as the Holy See.  That’s not very often when he’s on that special chair, by the way.  When you’re Catholic, that’s the one exception.  When he’s not on that throne thing? The Pope is fallible, every word.  He is not Jesus nor is he God incarnate.  He’s a religious leader and a pretty darned important one.  He’s the head Bishop.  But even a good pope, one who is not corrupt, will never say to treat his words as if Christ himself said it.  A good pope is humble.
  • When someone is being told by church leaders and others in their own faith that they MUST live a specific way under a specific set of rules that include affiliating with a specific political party, voting a specific way on certain issues, voting for particular candidates and threatening that there will be “spiritual consequences” if they don’t do as they’re told… that’s spiritual abuse.  There are in fact a set of rules to live by in Christianity.  They’re called the Ten Commandments.  Jesus himself supplemented the Ten Commandments.  We call Jesus’ own commandments The Golden Rule.
  • Being encouraged to engage in compliant self seeking (which focuses on seemingly obedient actions) rather than on the actual relationship with God and true obedience is spiritual abuse.  In other words, keeping a score card detracts from the relationship with God.  True humility and true giving does not keep track.  Someone who gives of the heart never remembers… someone who receives never forgets.
  • When a church you attend has “unspoken rules” that you dare not break or you risk being shunned, that’s spiritual abuse.   Especially when it means that your loyalty and faith will be called into question.
  • When the wants of the church leader and even the church are put above the needs of the faithful, that’s spiritual abuse.  Just think about various denominations where illegal actions of priests are not reported to police so that they can be “handled from within.”  The needs of the victims are ignored and made insignificant.  The supposed doctrine is even put above victims’ needs at times.  That’s also spiritual abuse.
  • When there is a lack of balance in daily life and lack of balance in the approach to living, and that imbalance is encouraged and enforced, that is spiritual abuse.  When it’s self-encouraged, that’s another problem.   When literally every single aspect of life is about religion, God, and living and breathing religion without any sort of balance…. even the Church recognizes that that’s not healthy.  A good pastor will advise his flock to live a balanced life that includes God, but not one where there is exclusion of normal, healthy activities and interactions.  For example, a priest that tells his flock to avoid all medical intervention, even those that could be life saving, and to instead devote all time to prayer is spiritually abusive AND giving bad advice.  A priest that tells his flock that even recreational sex between married spouses is wrong unless the entire purpose is to procreate is being spiritually abusive and setting that marriage up for failure.  A priest that tells his flock that the only healthy and acceptable social activities are church based or church approved is being spiritually abusive.  A priest telling a married couple that going on birth control is wrong even if getting pregnant could kill her and she wouldn’t survive a pregnancy and/or a resulting baby wouldn’t make it to term without severe deformities and premature birth and being incompatible with life … that’s spiritually abusive.  And anyone that would encourage and spread these ideas is being spiritually abusive.
  • It’s a stereotype to believe that Christians believe they’ll be persecuted for their beliefs, but there’s a basis in that stereotype.  When this particular paranoia does exist, the paranoia that the faithful of the Christian faith are more enlightened but hated for it and everyone else will therefore try and persecute and destroy the faithful… it’s harmful and abusive.  It’s abusive to those who are not Christian but it’s also harmful to those who ARE Christian.  It creates an Us Versus Them mentality that’s pervasive and unjustified and automatically creates Insiders and Outsiders.  It pushes people away from the faith who might otherwise have given it a chance.  It creates a self-fulfilling prophecy.
  • Creating human agendas that are not Christ-like, but selfish agendas that go against what Christ taught, are spiritually abusive.  Believing and encouraging others to believe that one and only one faith/denomination/system/ideology/idea is right and threatening that believing otherwise is going to have a spiritual consequence is abusive.  Jesus never once said, “If you don’t believe in me or God you will go to hell.”  What he said was he would show us the path to God and all we had to do was choose to follow him.
  • Using scare tactics and the threat of humiliation are spiritually abusive.  Period. Full stop.
  • True faith is not secretive.  You should not ever have to hide your faith no matter what it is.  If you are Christian, Muslim, Atheist, Agnostic, Hindi, Buddhist, Taoist, Wicca, Animist, Spiritualist, Pagan, Humanist, Secularist, etc.  If you have to hide your feelings and your faith or feel that you risk punishment from someone else, that’s spiritual abuse.
  • Abusive thought patterns: black/white, this/that, either/or, us/them, good/bad.  This is call Dichotomous thinking patterns.  People who believe this way believe that their interpretations are the only right way and all others are wrong and there’s no room for error.  Anyone who disagrees is wrong.  If you disagree with them, you’re not “enough.”  Again… abusive.
  • Evangelistic zealotry that is myopic.

 

So what do you do about this? How do you deal with it? Recognizing the signs are the first step.  I’m sure I’m missing many signs but these are the ones that have stuck out the most and the ones that seem to be the most agreed upon that occur not just among some religious leaders but in families and with individuals.   They were the ones I was also able to recall most easily.

I’ll spare you as to why I was inspired to post this now, tonight.

Read Full Post »


Today, I’m truly grateful for…

  1. My daughters.
  2. My husband.
  3. My friends, even when it’s been a while since speaking.
  4. My family, including my in-laws.
  5. My lovely goddaughter.
  6. A roof over my head.
  7. Warm blankets.
  8. Heat in my home.
  9. Hot coffee.
  10. Cats to snuggle with.
  11. Antibiotics.
  12. Coworkers that I enjoy and respect.
  13. A job that I enjoy.
  14. Ricola.
  15. Whoever thought of body brushing.
  16. Whatever the “Plus” is in Puff’s Plus
  17. My husband having hooked up the water to the filter thingie in the refrigerator and we get cold water from the fridge by pushing a button.  Who knew a simple pleasure could make so much of a difference?
  18. The girls still enjoying their Christmas gifts and old toys alike.
  19. Being a grown-up and getting to decide what will worry me and what won’t.
  20. My android phone. How did I manage for so long without one?
  21. Icy melt.
  22. Delicious vegetarian recipes.
  23. How much better I’ve felt since eating vegetarian.
  24. My daughters’ teachers.
  25. Being able to kiss and hug my daughters every morning when they wake and every night when they go to bed.
  26. Watching my daughters play together on a snowy day.
  27. Fuzzy slippers.
  28. Door to door delivery service from the internet.
  29. Pretty nail polish.

 

Read Full Post »

Older Posts »

Follow

Get every new post delivered to your Inbox.

Join 824 other followers

%d bloggers like this: