2/27/2014

Flashback Thursday: When I Need Reminding

Right now is kinda crappy--lots of things just not going well, depression leaching hope, so I thought I'd repost this piece to remind myself.  Plus I've been reading this book and it has some real nuggets of wisdom, if only I can hold onto them.

 "I learned to let go of the past by honouring painful memories rather than trying to shut them out through idle distraction and sensual indulgence.”
“Addressing the impact of critical life events is often simpler than we imagine. This frees up emotional space that allows us to move on in life."

“Depression arises when we perceive we have lost something of significance, perhaps something we judge to be essential to our happiness or future well-being. Our mind quietly latches on to a host of connected meanings, such as pessimistic views of the future and negative conceptions of the self (‘I’m a loser’). Such is the misdirected power of the brooding mind that it rarely stops at our actual losses.”

“Dark nights of the soul are not ailments to be removed or overcome, but are an acknowledgement that ‘progress’ through life is not necessarily linear, consciously directed or, at times, even possible. Sometimes we need to retreat to deeper spaces within us in order to process the pain of our existence. Sometimes we need to listen to the darkness in our hearts. In doing so, we can discover new resources in ourselves and become enriched as a result. The journey through a dark night takes courage and fortitude.”

Excerpts from “Mindfulness for Black Dogs & Blue Days” by Richard Gilpin. -It's a worthwhile book, deeply profound when you can latch onto it. And I guess that's part of it--learning to latch on, to reach out, grab onto mantras and ideas and the promise that there's a better tomorrow out there if you can crawl out of the hole you're in. That totally makes me think of zombies, so maybe there's hope.

So, onto a post I wrote when I wasn't in the hole grasping out zombie like.



"And I asked myself about the present: how wide it was, how deep it was, how much was mine to keep." Kurt Vonnegut







One of the things about teaching the same novel dozens of times is that lines reverberate in your mind, come to you unbidden, like whispers on the wind.




Time is a tricky thing. Billy Pilgrim, in Slaughterhouse-Five, has come "unstuck in time." He slams around willy-nilly, unable to control the experiences, unable to do more than passively observe himself and the action that swirls around him. Vonnegut once alluded that he too was unstuck in time, and perhaps that's a part of getting older, of getting stuck in one's past.





And yet, the wisdom of the opening quote hangs there like a jewel twinkling. Vonnegut may not have been able to hold onto that wisdom, to keep himself in the present, in the moment, but he knew that was where we are supposed to be.





The reality, though, is that even if we immerse ourselves in the moment, even if we exist fully in the now, it still slips into the past so quickly. The trick is to slide along with the moment into the next one while letting the past slip from us. It informs us, creates us, but does not have to bind us. We can choose to continually reinvent ourselves by holding onto this moment and squeezing it for all it's worth.





Vonnegut's question is a mantra worth repeating each day. None of it and all of it is mine to keep. And that, that realization empties me of baggage and lets me engage in the moment, free.



I hope, at least, and will keep repeating it until it becomes so.


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I should find it comforting that at some point I was in the moment and practicing mindfulness. I'm kinda pissed that someone who could write the above post could actually fall into the fucking hole, though. Just goes to show you--the hole is always there. Waiting. I'm gonna kick that hole's ass. It's pissed me off more than I've pissed myself off....I think.

Spring needs to get here. And soon.

2/20/2014

Not Even In Spite of...But Because of...Fear

The other morning I was getting ready for a meeting, one that was a little bit out of my comfort zone, and as I applied base to cover my decidedly red cheeks (yes, I flush when nervous or excited...yay me), I was mentally going through some affirmations...you know, to pump myself up.

And so there I was...smearing base on my face in no particular pattern and not really checking for lines or coverage cuz I was living in my head...and I told myself, "You're fearless." And then I dissolved in helpless laughter. To tell you the truth, I'm not even sure I finished putting the base on I was laughing so hard. And then I had to go find my Imodium and phenergan because that's what I do when my body chooses to be an ass and vote no confidence.

The problem with living with an anxiety disorder, especially over several decades (all of the decades I've got on me) is that even when one's brain is all fearless and shit, insisting "I got this, no really, I do," the body is doubled over in laughter and spasms not agreeing at all. The only solution to this conundrum is a delicate, fine balance of anxiolitics and meds to control the GI tract. So far the only solution to being beet red is base...which I don't always finish putting on...

One of my other "coping" mechanisms is giggle fits. Uncontrollable, unpredictable giggle fits. You know, because my body likes pretending the Joker has gassed me at the least convenient times, like when I'm in front of a class lecturing.

So there I was the other day, keeping the makers of Imodium and Phenergan in business, laughing uncontrollably as I flashed through all the times I've been anything but fearless.

Can you imagine fearlessness? You could do anything, no problem. But I don't know that you would do the things that matter most because fear goes with investment and care. When you care deeply about something, when the stakes are incredibly high, fear is a necessary companion. Fear motivates. Fear makes you think.

No. I am not fearless. I am full of fear. Surrounded by it. Steeped in it. Intimately familiar with it. It is my dance partner.

And because I know fear so well, anxiety is always there, as well. It sits in my stomach, twists it, makes my heart feel as if it will break free from my chest, and keeps my mind revving at full throttle.

I know anxiety. I know fear.
And still, I act, because when I am fearful, when I am anxious, I am motivated toward change.

And my body knows how to catalyze that fear and anxiety into comic relief so that I do not take myself too seriously.

I am fearless. Oh, heavens no, but like a perennial joke that never loses its connection with our funny bone, saying that never fails to lighten my heart and put a smile on my face. And then I'm ready, whether I remember to smear the base on both sides of my face or not. And that's good enough.

2/12/2014

Would you like?

Breakfast in our house is an eat as you want affair, which makes it sound self-serve and easy and quiet, which it most certainly is not.

Rick leaves first, and he gets to get ready in a quiet, slumbering house, except for the dogs and cats who are pains in the butt first thing in the morning because they want to eat. But still, he gets an hour of solitude...

I'm up next, at seven, and Lily is usually right behind me. She's a sweetie and has gotten really good at pouring coffee for me and helping me with breakfast as she gets hers. If it's too complicated (cereal, blueberries and yogurt), Bobby gets that for me.

Bobby takes care of himself, but there's lots of Lily and me hollering to get his attention so he can remember his morning routine.

Rosie is always the last to wake up, and often it's because one of us has taken the yorkie back to lick her awake. Rosie needs choices for breakfast, and often none of the choices sound good to her, so you have to go over and over the choices until she caves and chooses one. Lily now takes care of helping Rosie with breakfast.

If you're around for all of the morning fun, which I often am, it's interesting and loud and entertaining, often punctuated by Val's loud barks and constant shifting from person to person in an effort to get breakfast shared with her.

It's a long drawn out process, and yay, lunch, which is also done the same way, is only a few hours away. Thankfully, the girls are on a frozen burrito kick, so Lily skillfully nukes away, trying to get everyone to eat an exploded burrito.

Supper, which Bobby happily makes, is slightly quicker, but there's still a lot of "Would you like?" going on, as everyone gets a custom version of the base meal because Bobby is all about kicking it up a notch.

Okay, so meals and snacks are a bit of an elaborate production, but everyone eats, and the level of cooperation in making sure everyone eats is wonderful to see.

It's also neat to see the girls take on more active roles in their self-care and in helping with the house. They've still got significant gaps in some life skills areas, but because they are often hidden, it's hard to know what to cover until the hidden is made visible. In the meantime, the three kids work as a team, interdependent and cooperative, even if a bit loud and argumentative. It's comforting to watch them work it out together, to sit back and let them. It gives me confidence that together the three of them will be able to navigate the world and be okay.

It's also a lesson for me--to see that asking for help and accepting other people having different skill sets is a perfectly normal part of their world. No ridicule. No belittling. Sometimes wonder, but never judgment.

I want to be like my kids. Interdependent and understanding, willing to ask a dozen times "Would you like...?" until I've found out what others around me need so that I can help them get it.

2/11/2014

Not Ill, Not Sick, Not Diseased

The history of how societies over the centuries have treated the mentally ill and the different is not a pretty one. In fact, it's a downright ugly one, one that rivals America's treatment of the indigenous people of this country and the Africans brought over in slavery.

In fact, the power structure of wealthy white men has much to be ashamed of. As Lily keeps noting as she reads her college history textbook, we were real douches. She's blunt with her language, much like her mama is. And given that's our one rule in the house--don't be a douche--she's well-acquainted with the concept.

Of course, I remind her WE weren't, but our ancestors were. I also note that we still have a long, long way to go to treating all people equally.

Minorities, women, people with disabilities...the list of people who are marginalized in this country is extensive. Government respects people with money, respects the power brokers, not the broken and powerless.

Even people who purport to support those who are disadvantaged are often revealed to be prejudiced and not as inclusive as they claim to be.

How are we supposed to change the world, bring equality, equal protection before the law, and true inclusion to all people if we, in fact, don't honestly believe all people should have a seat at the table?

We are well and truly screwed. The stakeholders in any discussion about a minority group are the members of that group. That has to be the bottom line.

We can be allies to the stakeholders, but when we take over the discussion and claim to understand them better than they understand themselves, we are arrogant and, let's be real, more than a little douchey.

We all have intersectionality--we belong to more than one group and we can experience prejudice and discrimination for different things at different times, or for multiple things at once.

Nowhere is this more evident than this Post by The Feminist Breeder (TFB) and the thousands of comments (plenty of comments have disappeared as various individuals have been banned, which is a shame, as it hides an important part of the exchanges).

The woman who writes as the feminist breeder has recently had her son diagnosed on the spectrum, which she wrote about on her closed website (you must pay to read), but a couple posts on her facebook page really activated autistic advocates to try to explain to TFB why her comments were hurtful to the autistic individuals.

You see, TFB wants a cure and to prevent future autistic individuals from existing--that's what prevention would mean. And that triggers a lot of autistic adults who've grown up being told they are broken and need to be fixed, people who see autism as an integral part of who they are, and who also believe that there are often tremendous assets to being autistic. They feel that cure and prevention is tantamount to eugenics and it scares the hell out of them, especially as Downs Syndrome fetuses are aborted at frightening levels (approaching 90 percent).

So what responsibility do parents of autistic children have to autistic adults we meet online? What role do we play in shaping how the world sees autism?

We all know how Autism Speaks and anti-vaccine groups have created tremendously damaging stereotypes of autistics and many of us stand against a perspective of autism as tragedy.

That doesn't mean we don't acknowledge the challenges in raising autistic children in a society that is not made for them nor particularly flexible or understanding. In fact, many of the problems we face as parents have more to do with society's reaction to autism than it does with our children.

Our schools, our stores, almost everywhere we take our children is set up to be at the very least unpleasant. Harsh fluorescents, crowds, loud noises, you name it. It doesn't help.

We learn ways around that when we can, but sometimes there are things we can't alter and that leaves us struggling and our children struggling. Some autistics react aggressively to their environment, lashing out.

Wouldn't you lash out, too, if your environment was overwhelming you, if you were having demands made on you that are out of your ability to understand or do, or that you find painful?

Wouldn't you lash out if time after time you patiently tried to explain how you perceive the world only to be dismissed by experts and parents who think they understand autism better than you, who are living it, do?

How would you feel if you heard constantly that who you were, your very identity, was ill, sick, and diseased and something to be eradicated?


Understanding where people are coming from, understanding when our language is threatening, is really important.

I know how my children's autism affects me as a parent. I am not the expert on living with autism, though. My children are. And each of them has a different experience, because their autism impacts them differently.
My Lily and I are the most similar, and I can see my BAPpiness best in her--we relate to each other, see the world in very much the same way, and so I could, with some confidence, say I understand where she's coming from in many ways. However, her autism also creates differences between the way our brains work. We are similar but not the same. She clearly has issues that rise to the level of being disabling in this society, whereas I am able to get by easier--I am not disabled by my BAPpiness. Uncomfortable in some situations, too obviously literal in my thinking at times, but I can and do navigate the social and work environments successfully without the need of assistance.

So, even though I have glimpses, it would be arrogant of me to think I understand what it means to be autistic.

My brother has mental health issues and drug addiction issues. I can talk about what it's like to be his sister. I can't speak for what it's like to be him.

What I can talk about from the inside out is anxiety disorder and depression. My family can talk about what it's like to be on the outside, how my issues affect them.

To pretend we are experts on experiences we have not had is arrogant. We have an obligation, if we really believe in respect and equality, to listen to those living the experience. They know it from the inside out. If they tell us our language is harmful, we should listen and take care with our rhetoric.

I have three kids on the spectrum.  I can talk about what it's like to parent them, but I cannot talk about what it's like to be autistic.  I can talk about their behaviors, but I cannot talk about what their interior reality is like. I can extrapolate, but I could be horribly wrong, so if I really want to know, I have to ask them. And then I have to listen to them.

I cannot and will not treat them like their autism renders them ill, sick or diseased. Their brains are wired differently. They experience the world differently, and it is only by respecting their experiences and listening to them that I can help build a world they can fit into.

How can I do any differently for them or any one else struggling to find his or her place in the world today?

2/05/2014

Why Positive Change is So Slow: My Way is the Right Way

Do you remember when George Bush said he never thought twice about his decisions--he made them and was done? 

How many times have you engaged in or witnessed someone so zealously committed to his or her beliefs that relationships were torn apart over something that might have been relatively small in significance?

How often do you, when you are talking to someone,  find yourself getting stony when you realize the person holds a different viewpoint and you can't imagine how he/she doesn't see it the same way you do?

What is wrong with people? We all think it, sometimes hundreds of times in a day, when we realize not everyone sees things the way we do. Sometimes we argue till we're blue in the face. Sometimes they do. And in the end, each person's more convicted to his or her belief than before the conversation began.

We've certainly seen it in the anti-vaccine/pro-vaccine divide, the alt-med/med divide. Hatred, contempt, and ugliness are rampant when the two sides in these debates come together to discuss thing. 

All over a difference of belief or a difference of perspective.

Sometimes over the use of one word or a single sentence.

When we get someone or many people chiming in to share how they perceive it, we may double or triple down and become even more entrenched.

Sometimes, we all get lucky and everyone considers other perspectives and empathy for the other people's positions is gained, and we walk away better, more open, more accepting. 

Often, though, that's not the case.

And when we become entrenched and certain we are right and anyone who feels differently is wrong, we all lose. Positive change becomes impossible.

Why do so often feel the need to chime in when someone shares a belief or a practice that we don't follow? Why do we have to judge the other person negatively? Think we're better than that person, more enlightened because we believe x while he believes y and who in his right mind would believe y?

We're not going to agree on everything. We may agree on very little. That ought to be, within reason, okay. If we believe in being kind to others, willing to learn and grow and listen, then why does it matter if I'm conservative in my approach and another is liberal, or if one person is Christian and the other person is atheist?

Shouldn't core values like making the world a kinder, more accepting place for diversity trump other differences?

I think it should, but I'm not going to go beat up on you over it. It'd negate my core belief. And that doesn't make me better than you or make me right and you wrong. It means we're all different and we're all walking our own paths and those journeys are often hard enough without adding bullshit to it.


2/03/2014

I Wanna Sleep: Dealing with Complex Health Issues and Chronic Fatigue--Looking for Grace

Here's what I know: people, even those who love you dearly, can get tired of hearing you don't feel well. Doctors get frustrated when they can't fix you, and in previous decades, when the psychosomatic view was prevalent when they couldn't find a "reason" for your ailments, I got used to doctors shrugging their shoulders and dismissing my complaints.

I did get medically discharged from the army reserves for fibromyalgia back when it was  "all in my head," some 25 years ago. It's nice knowing that progress has been made, that some reasons for fibromyalgia and chronic fatigue have been discovered, so that my issues are treated as something other than me being a hypochondriac. However, there's still a lot of work to be done, because once you've got the fibro diagnosis, docs are pretty willing to lump any symptom you have to fibro or to the cluster of comorbid conditions that go along with fibro, like IBS and migraines, which I've got.

I've been seen dozens of times over the last three years for my diabetes, for recurrent strep, sinus, and urinary tract infections, am on a daily antibiotic for the prevention of the urinary tract infections. When I complain about the fatigue, the crushing exhaustion, I'm met with understanding and empathy, but with little to do about it other than to be told that it's chronic fatigue due to my multiple health issues and that it's something I will have to live with--rest, rest, and more rest. When I complain that my blood sugars are high, it's because I'm sick. The problem is I'm sick more often than not. Let's up the damn meds.

At any rate, for three years now (really, three freaking years), I nap one to two times a day as my schedule allows, and the last ten days it's been most of the day, since I've been sick with ear infections, my chronic sinus infection, and what I thought was the flu, but was likely an upper GI bug mixing with the other stuff and making me miserable.

I'm improved now, with the GI bug resolved, but my right cheek is still bright red because of the sinus infection, and that redness has spread to over my eyebrows. And yet today is day five of antibiotics. I can carry out small tasks, but just the act of getting dressed requires a break, as it wears me out.

And yet, I'm going back to teach today because I have to. Even though I will have to plan pit stops so that I can catch my breath and get my blood pressure back down--something that's been documented high twice at two doctors' visits but been attributed again to being sick. I can see their point--I'm allergic to beta blockers, so treatment will be complicated. And, hey, maybe it will go back down...

And the doc and FNP are used to that complicatedness--I'm off lyrica because of the side effects. Off victoza, because of the side effects, off nexium because of the side effects. No preventatives for my migraines because of side effects.

A lot of shit I simply have to deal with.  And that is part of getting older. It is. And attitude is an important predictor of perceived quality of life. I had one grandmother confined to her wheelchair, completely dependent on others for everything, but man, she had grace and humor, and I think, looking back 30 years (she'll have been gone 30 years in June--yet remains a fundamental role model and guide to me all these years later), that she was not unhappy. She smiled a lot, laughed, joked, and overall, dealt with her challenges in a way that shaped me and helped make me the person I am today. My other grandmother, who had bipolar among other health issues, was mobile until her stroke which caused her death. She was the opposite kind of role model. She always complained. She was bitter. 

Look, both women could have dealt with no disabilities and still had the opposite personalities, and undoubtedly did before they had their health issues. Personality is important, but I think perspective is even more important. My maternal grandmother was a different person and was able to cope better than my paternal grandmother. She was fun to be with and I liked her---she was a wonderful person.

My paternal grandmother and I had a complicated relationship. She wasn't easy to deal with, but I know she loved me--her care at making me my favorite meal at my birthday--her meatloaf and scalloped potatoes doused in bacon grease and followed by strawberry cake and strawberry ice cream showed me year after year that she cared enough to go to the effort. She's been gone 19 years now, and I still smile thinking of her meals. And it's the meal we try to replicate each year at my birthday. So it's not that I disliked her--I loved her. I just hated seeing her always unhappy. Although, I also think she was happiest when she was miserable and had something to complain about.

I want to take the best of them with me. Have always tried to. Next to my mother, they were/are the most important female role models. And I know I'm a blend of all three of these women who deal with and dealt with challenges that make and made finding grace a challenge.

Grace and a little bit of bacon grease when the grace isn't forthcoming. Maybe my paternal grandmother had as much to teach--when you can't find the laughter or the grace--comfort food lovingly made is almost as good.