Avoidance

I’m supposed to be paying bills.

But there isn’t enough money.

So, I am doing this thing that I do.  Some like to call it procrastination, but I’ve started to use terms that are more honest wherever possible, so this thing is called “avoidance”.

When the thing cannot be done comfortably, efficiently, without stress, or with relative ease, I avoid doing the thing.  “Avoidance”.

Right now it is about the bills, because there is stress, discomfort, inefficiency, and a bit of struggle involved in trying to figure out how to make money multiply without a magic wand or the art of alchemy to assist in the task.  I don’t know what to pay and what to leave unpaid.  I don’t know who might be gracious and who might attack the credit score I have been working so hard to improve.  I know that all of the things need to be paid, eventually.  And I know that one way or another, through begging or borrowing or more high interest loans that bury me in even deeper debt, things will be paid, but that doesn’t make the job of maneuvering and managing a too small budget less uncomfortable or less stressful, so I still want to avoid it.

A long overdue blog post is better than an attempt at bill payment … even one that details the stress I feel over the bill payment attempt.

I think that part of this avoidance is built into our DNA.  We didn’t survive as a species by running headlong into danger with great stupidity and zero planning.  We avoid situations that seem like losing scenarios as a matter of survival.  Avoidance helps us stay alive, in many ways, so it can be an excellent mechanism for the continuance of the human race—which is likely a good thing.

But there may also be a negative side to this tendency toward avoidance.  That negative side is the part that I think frequently trips me up and leaves me face down on the proverbial pavement of life.  It is the tendency of our culture to avoid any sort of suffering, pain, or pretense of unease—or dis-ease—whatsoever.  It is the glossing over of the lament in favor of pretending that all is well and good and easy, all of the time.  It is the lie that we don’t just avoid the things that are uncomfortable, but that the things that are uncomfortable don’t exist—and if they do exist, that something is wrong and needs to be “fixed” and fixed immediately.

If you’ve read anything else that I have ever written, you already know that I suffer from chronic illness, both mental and physical in nature.  Something will always be “wrong” with me.  And the desire to either “fix” or deny the existence of the problem is, therefore, always with me.  I’ve found, through many therapy sessions and lots of searching of my own spirit, that this desire is based largely on cultural perceptions.  It is shameful not to “work”, “have a job”, “do something with your life”, “have a purpose”, and it is shameful to “beg”, “live off other’s hard-earned money”, “take what I didn’t earn”, “play the victim”, “act sick”, “sit on my ass all day”, “be lazy”, or not “suck it up”, “get over it”, “take some Tylenol and get off my butt”, “push through the pain”, or to be like “my friend”, “my husband’s cousin”, or any number of other people and “run 5k’s”, “go to work every day”, “take care of five kids”, even though they have [insert one of my illnesses here] “just like you”.

Not only do I cope with my illness every day, but I deal with the public perceptions and the cultural shame that goes along with being chronically ill.

A court has determined that I cannot work—that there are no jobs that I can do given my particular limitations, diagnoses, skills, educational background, work history, symptoms, and the way that those things intersect with the job market in my geographical location.  “There are no jobs.”  That is literally in the court transcript for you to read, if you were to read through the lengthy hours of Q and A that were required for us to get to the point where a judge determined that I am disabled.

But that transcript doesn’t matter to probably about 85% of the people who I come into contact with in my day to day interactions.  It doesn’t matter because of this negative sense of avoidance.  I’m supposed to avoid suffering and illness and flaws and bad shit.  I’m not supposed to acknowledge that, but fix it, and fix it fast.  I’m not supposed to admit that I can barely sit at this desk right now because of the pain in my back.  I’m not supposed to admit that I’m at this desk and not a “work” desk because I am disabled.  I’m not supposed to BE disabled.  I’m supposed to take some Tylenol and get off my ass and run a 5k like aunt Janet from West Virginia!

Because we avoid suffering.  We get over that shit, or we lie about it, or we become the kind of people who complain all the time but only a small, acceptable, mundane amount of complaining that is socially acceptable around the water cooler at our jobs.  Because we are allowed to be moderately miserable all the time if we are still productive.  But real, serious, deeply affecting problems are not socially accepted.  Those we avoid.

I sometimes wonder who decides which challenges are acceptable and which are not.

When all the women have ovaries that stop producing more eggs, we call it menopause and call it normal.  When all the men start having limp, less adept penises and lower sperm counts, we call it “erectile dysfunction” and make a billion-dollar industry out of making them hard again, instead of accepting that aging men can’t always perform sexually on command.  It’s normal for a woman’s sexual function to change, but it is a problem to avoid and be “fixed” for a man?  Who decided that?  The pharmaceutical companies?  The medical professionals?  The sex work industry?  Who made this a thing?

And who made being chronically ill unacceptable but being terminally ill perfectly fine?  That question makes me sound like an asshole all the time, I know.  But it only makes me sound like an asshole because of the perceptions already infused into those terms.  Chronically ill.  Terminally ill.  One is a drain on society.  One is a sainted state worthy of all the compassion.  We all know which one is which.  I’m not the sainted one worthy of all the compassion.  I’m the other.  And I am an asshole for pointing out that there is a bias.  I am an asshole for pointing out that dying faster somehow makes you worthier of care.  (At least in the eyes of many in our society, that is—it doesn’t actually make you worthier of care.)

Who decided that I need a “real job” to be treated like a “real person”?  Who decided that I am allowed to be treated poorly because I am in a state of poverty—or that I deserve to live in an impoverished state if I cannot work due to illness?  Who decided that $750 per month is the amount that a disabled person who has less than 40 work credits should be forced to live on, making this entire post even a thing that exists?  And why do I not get any credits for the early years of my work history when I was delivering papers and babysitting, or for the years when I was working two part time jobs and going to school and raising a daughter as a single parent.  That was more damn work than I have seen most anyone do—ever.  And that doesn’t “count” for anything.  Who decided that doesn’t count as work? Who decided I get $750 instead of $3000 because of those years?  Who decided that my life isn’t valuable enough to be offered what I need to not be sitting at this desk, in pain, avoiding my bills like the plague.

If I had the plague, I would get more benefits.  Because it would kill me.  If you are dying they let you have a better quality of life than if you will live.  Oh wait … not socially acceptable.  We already went over that.

So, this avoidance, this thing that was written into our DNA as a positive survival instinct has somehow become a thing that we use to cover up and shame and deny and harm whatever is connected to our socially unaccepted suffering.  And I don’t know that I will ever get a complete, straight answer about how that came to be, or who determined and decided what was or was not acceptable, but I do hope that I will someday begin to shape the conversation around why we do this, and why we need to stop doing this.

We need to stop avoiding suffering and pain and bad shit that happens, because it happens to all of us.  It is part of the human experience.  And it is an important part of that experience. While much of my suffering was regrettable, and I obviously would choose to go down another path if I could, the person I am today was forged in the flames of that suffering.  Those challenges shaped me.  And they made me a better person.

They didn’t make me a better person right away.  In fact, they led me down a dangerous road to some very dark places.  But that happened when I was trying to hide and avoid and stuff away all of the bad things.  If I had been able to and allowed to cope with what I had experienced as a child, or a teen, in positive ways—expressing the pain and the betrayal and the confusion and the suffering openly and in a safe space—I would have avoided that road and those places altogether.  I might have avoided mental illness and chronic pain altogether.  (Nobody knows what causes fibromyalgia, in distinct terms, so I cannot know that for certain, but it is linked with stress and often presents in tandem with post-traumatic stress, so it is possible that without the PTSD there would be no fibromyalgia.)  Our society’s insistence that pain be hidden likely caused me more pain.

But now that I am in a space where I am able to process and cope with and express all that I should have been allowed to express all those years ago, I am becoming strong and wise and good in ways I might not have were it not for the experience that I went through.

Lament shapes the spirit in beautiful ways.

Pain makes us compassionate, kind, understanding, gracious, loving, connected, and strong.  That is not something that we should hide.  And that is certainly not something we should avoid.

We still shouldn’t run, stupidly, toward danger without a plan.  But there isn’t a need for us to hide and avoid something that makes us compassionate, kind, understanding, gracious, loving, connected, and strong.  Frankly, hiding that seems like a stupid run toward danger … it probably is.  And that is probably why so many things about our society today seem so messed up, in the sense where one person refuses to lay down their “right” for the lives of, potentially, thousands of others.

We are in danger, and we are being stupid.  Because we have hidden so well and avoided so effectively the thing that makes us compassionate and kind and understanding and gracious and loving and connected and strong, that we have become the sort of society that breaks apart and leaves individuals to be slaughtered as “they”, somehow apart from us and without our compassion, rather than feel the pain of the truth—that we have become so unfeeling that we cannot mourn our own brokenness, so we deny it again and again.

We have put some imagined dessert to rights of the individual above the conscious collective of the society.  I now becomes more important than we.  And that is a grave error.

We, the people—that is how it begins.  Not, I the individual who wants a gun and an erection despite the compassion and the biological facts that are required for me to understand the world around me.

“I don’t suffer.  I don’t have pain.  I take a Tylenol and go to work.  I have rights.”

But that isn’t true.  We all suffer.  We all have pain.  We all have days when no painkiller will dull the ache we feel—be it physical or emotional.  And, most importantly, WE have rights—all of us together, in concert, and being accountable to one another.  The only way to accurately see that, is to start to uncover the pain and suffering and to acknowledge it, to express it, to cope with it, and to begin shaping yourself and your life into one that has compassion, kindness, understanding, grace, love, connection, and collaborative strength.

Stop the avoidance.  Embrace the lament.  Feel.  Suffer.  And come out the other side a better version of yourself.

Now, if you will excuse me, I need to suffer through paying my bills.

 

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I Should Be Packing Right Now

The journey to this moment has been long and hard and chaotic and sometimes frightening.  So, now that I am here, I am paralyzed.

This is certainly not the first time that I have fought my way through all sorts of trauma to find myself safe on the other side and stuck.  Just stuck.  It is like my self doesn’t know how to handle “normal” living. Which should not be surprising to anyone who knows me or my story well, because the great majority of my living has been disordered and chaotic and traumatic and totally fucking wrong.  It isn’t a shock to suddenly feel all weird and confused by normalcy and calm.

But it is a problem.

Sometimes you meet people in life whom you believe create drama.  I’m not one of those people, but I do believe that they exist. I understand why people could believe that I am one of those people, however.  Because I share a lot of characteristics with those people, I am sure.

I don’t create drama.  I’m not running around seeking problems and hoping to add them to my list of affairs.  But I do have a life that attracts many dramatic or uncommon or challenging events.

For instance, this past weekend I discovered that my daughter’s father may or may not be the biological child of the man that he and we have believed him to be the son of for many years.  And I found this out from the adult child of that man, whose stories while she was growing up, completely estranged from the “other family” the man had previous to the family he shared with her mother, are the proofs that we have for this new information.  Is he my daughter’s grandfather?  Not according to him.  But that doesn’t change much other than the storytelling gene might be really strong among the men of this particular family.  Or it could change everything, and my daughter, and the father she has never met and does not want to, might have a totally other family they are completely unaware of out there in the world.  And the grandmother she never met—who then is more unfaithful and dishonest a woman than we imagined, which is saying something—is the only one who would know the truth, assuming she is still living (as I mentioned, we don’t exactly keep in touch with her dad’s family).

See.  This creates all sorts of fucking drama.  I don’t want it.  I don’t need it.  It is confusing and chaotic and leads to all sorts of questions that I don’t know whether to answer or leave alone.  And it doesn’t just involve me, but a woman who may or may not be an aunt to my daughter, and a man who may or may not be her grandfather, and a daughter who may or may not want to know the answer to whether or not they are or whether there is an entirely other family out there somewhere.  But then, how do I help her find that identity if we have no way of accessing that information without contact with a family we don’t want to have contact with?

There is an aspect of the life I am now living that creates this complication.  It isn’t necessarily a simple choice to be or not be in the midst of drama.  Sometimes drama comes for you, and you need to figure out if there are any ways to avoid it, or ways to tackle it without becoming completely absorbed by it.

My therapist likes to say, and I am getting good at saying it before she reminds me, that there is “no such thing as normal”.  All of us have some things in life that others cannot relate to exactly.  All of us have some things in life that are relatable to almost everyone.  But there isn’t one way of living life, and there isn’t one way of living it correctly, certainly.

I know, however, that much about my life is uncommon or not very relatable for a majority of the people that I encounter on a day to day basis.

Not many of us can say that we were abused by a relative from a very young age and for an extended period of time, causing us to develop a complex form of PTSD that acts much like the trauma of captivity in terms of brain malformation, and because that disability and that abuse were not discovered or appropriately handled until well into adulthood, repeated traumas of all sorts were added on top of that early trauma, leaving layers and layers of trauma and pain and suffering and alienation and mistrust.  So many layers.  And then, because that trauma was not dealt with appropriately and all those layers were trying so hard to be forced into alignment with “normal” or at least “average” living during the everyday, our bodies took on that trauma and turned it into physical disease.  Or at least that is one theory, and one that I can easily wrap my malformed captivity brain around.  So, in the prime of our lives, as our little birds leave the nest, and we can go out and do anything we want, we are actually left with the option to A) live according to the very strict and challenging rules of the state regarding disability income and expense, letting decisions be made by another in most cases and feeling like we still have no agency all these years after abuses can supposedly no longer reach our bodies, or B) suffer and die.

And all the “normal” people will think that statement is overly dramatic.  But they don’t have the life where the drama attacks you in the calm of a sunny Saturday afternoon when you see a message about a man named Marvin.  They have lives without disordered thinking and layers and layers of trauma.  They have working dominant hands.  They have sisters who answer the fucking phone when they call—for the third time, to wish her happy birthday.  They don’t freeze when things seem good or average or positive.

They call that fucking Wednesday!

Wednesday.

To me it is like hell freezing over.  And, granted, the temperature in Chicago this week could probably freeze hell.  So, maybe that happened.

I don’t generally have the luxury of a normal day with positive normal things happening.  There aren’t many days when some aspect of depression, anxiety, trauma, abuse, addiction, violence, poverty, pain, or some other messy, bad, or unfortunate thing is having an effect on me or the things around me.  And it isn’t that other people don’t also have these struggles.  I know that they do.  I know many people who have similar struggles.  But I know very few people who have ALL of these struggles.  And the compounding effects are significant.

I carry the weight of a hundred traumas—not just three or four.  So, a trauma-free day?  That just doesn’t exist for me.  I cannot imagine it.  And it frightens the hell out of me.

I know that the more I work in therapy, and the more I work to repair or bypass the disordered thought processes that have become normative for me, and the more remedies and treatments I discover, and the more I work to deconstruct what others have crafted and build for myself a self and a life that I love, the more I will have days that are free of these traumas.  At some point, I may even become accustomed to “normal” or “average” days.  (God, I hope not! Lol) But I am not there yet.

So, while I should be rejoicing in the fact that I probably have an apartment, and that all the pieces of the puzzle are fitting together for my move to the northside, where it is safer and I am closer to amenities and friends, I am, instead, writing this.  Because, I have been packing for months through chaos and threats from my landlord, but now that I have the promise of new owners and another lease, I don’t know what to put in a box.  I’m completely stymied by the normalcy of it.

Can I really be getting a decent apartment in a good neighborhood?  Can that be true?  Can I be inside the margin?  Am I allowed that?

Or is the bottom going to fall out and the earth is going to swallow me up, proving that hell hasn’t actually frozen over, but it was just waiting for me to be lulled into a false sense of security before it devoured me?

That question would sound like insanity … except for the fact that the bottom has been dropping out and hell devouring me for the last 35 years.

Yes.  I should be packing right now.  And by later today, or at least tomorrow morning, I likely will be, but for the moment I am processing this news slowly and cautiously—not wanting to get too happy too hastily, just in case.  Not to believe in the good before the good proves itself to be existent.

Yes, people of the Jesus-loving variety, I know what faith is and I need no proof-texting from the book of Hebrews.  I graduated from two seminaries.  But that definition means nothing to the malformed captive brain.  Only proof of the existence of the good works, and the only good guaranteed is that which comes from within, frankly.  I can only control me.

And you can’t control me either, so that is probably a good point to state, just in case that isn’t self-evident.

I don’t make life complicated.  It made itself complicated over time.  And it now doesn’t become easy because I want it to become such.  I don’t create drama.  My life has had lots of events that were traumatic and the traumatic brings along the dramatic.  The trauma doesn’t disappear because I want it to, and the drama doesn’t either.  I need to deal with them, cope with them, work through them.  And that takes time and hard work.

I don’t actually believe that my apartment with fall into hell.  I don’t believe in a literal hell, so that can’t be a thing I believe.  (I wrote a paper on it once for one of the classes in one of the seminaries.  I received high marks.)  But I do believe that the world should be kinder to those of us who have struggled much in our histories as we seek to find stasis in our present.  It isn’t as easy as it looks.

It is easy to believe that walking on flat, solid ground takes no effort if you have never been out at sea.

Stasis isn’t a given in a life that has been largely characterized by turbulence.  And choosing stasis isn’t easy when turbulence feels more natural.  Choosing the unnatural thing continuously until it no longer feels abnormal, or hard, or foreign is a great burden.

Change of any kind is difficult.  But changing patterns in this manner—taking what feels wrong and trying to tell your brain over and over that it is right, despite all sorts of triggering objections, is excruciating.

Packing right now is a devastating choice.  It means hope beyond all telling, and if things go wrong and this apartment doesn’t happen, it means pain that I cannot ever express—not ever … I don’t have the physical capacity to express it and even now, imagining having to express it at some point makes me feel like I must vomit.  That is what this means to me.  That is what choosing stasis means to me.  That is what “doing the normal thing” has invested in it.  I feel like my head might explode and I want to vomit—that is what normalcy is doing to me right now!

I’ll do it.  I’ll get there.  But after almost 5 years of therapy, with 20-some medications, and in the best physical and mental state I have been for some time, this is still an excruciating moment.  So, the next time you cannot understand why your child hasn’t finished their spelling homework, or your neighbor is dating another loser, or your grandpa gets all weird when you mention that son he rarely talks about remember this post.  Remember that sometimes choosing normal is extremely difficult and painful.  No matter how much being and having something—anything— “normal” is what we want.

Be kind to one another.  And for heaven’s sake somebody come over and help me pack these fucking boxes!!   lol

Next

I’m not certain if control issues were inherited or ingrained, but my mother was the pinnacle of having things in order, and bits of her need to control all the things all the time were handed down to me, and I handed bits down to my daughter.

It isn’t always a bad thing to want to be prepared.  It isn’t always a bad thing to desire control over a situation.  As a person who felt they didn’t have autonomy and agency at many times in her history—and even in the present moment—I am a big supporter of having some control over what happens in my life.  I like to be prepared.  I like to know what is coming, whenever possible.

But I also know that life isn’t controllable.  Life isn’t boxed up neatly and organized and cleaned up and put into order.  Life is chaos.  Life is dynamic.  Life is unpredictable.  Choose your own adjective—but the point is, you cannot maintain control of all the things all the time.

For almost three years now, I’ve been living in a situation that magnifies a lack of control a thousand times.  It has not been easy for me.

It isn’t that I am just like my mother, and need all the preparations and all the order and seek them in an anxious and worried manner that cannot allow for others to see the internal chaos—the private chaos that all the preparations are meant to hide.  I also have, whether inherited or ingrained, my dad’s propensity for being laid back and letting life happen, while offering peace and calm and love to everyone around you as a counter-measure to life’s chaos.

One of my employers, many years ago, said of my dad, “Dave is the kind of man whose pants you could light on fire and he would say, ‘Hmm. It’s a bit warm in here.’”  And that was one of the best descriptions of my dad’s manner of being that I ever heard.  I’m not that chill and laid back, but I am at least, I believe, half that laid back.

But the other half.  The half from my mom.  The half that wants order and shuns chaos. That half is feeling tortured right now!

The living situation that magnifies my lack of control, and the dependence and humility and trust that not having that control forces me to develop, has, in many ways, helped me become less like my mother and more like my father.  I’ve started letting go of control.  I’ve started asking for help without shame.  I’ve started to trust in divine providence.  But the last few weeks of this living situation have brought out the control freak in the most unflattering ways.

After almost three years of waiting, I am now 25 days from my disability hearing.

25 days.

I’ve waited more than 25 months for this day.

And I am terrified, because I have no fucking clue what happens next.

The other day I emailed the paralegal that is working with my lawyer to prepare my case.  I asked him what my next steps were.  I asked him what I do now—after I dutifully went from doctor to doctor, asking if they agree that I am disabled and getting their detailed documentation on record when they did agree.

The paralegal said I do nothing.

Nothing.

Next I do nothing.

Oh. My. Fucking. God.

I am completely incapable of doing nothing with 25 days standing between me and the decision that determines how, or even if, I survive from this point forward.  I can’t do nothing while a stranger—a man I have never met—looks over all of those detailed documents and decides whether I get the assistance I need to live independently, or whether I am forced into some other sort of situation, where I don’t have the right to the freedom and independence that people who are not sick all the time take for granted.

That freedom and independence might not be granted in that courtroom.  Or maybe it will.

Either way, I don’t know what comes next.

This ominous unknown “next” is looming before me, and I am told that my response right now should be to do nothing.

I’m not doing well with that.  All the parts of me that desire control and preparation and order are screaming out in pain.  All the parts that need to know what to do and need to know how to best prepare for what is coming are feeling tortured.  I forget to breathe sometimes.  There is a tightness in my chest, on occasion, that I can’t be sure is from my current respiratory infection, because I have a suspicion that it is a sign of panic instead.

I emailed the paralegal again today.  I asked him what happens after.  What happens after I am awarded benefits?  Do I get them right away?  Do I have to wait even longer?  Does my fundraiser need to sustain me for two more months?  Eight more months?  When do I get the $21,000 that the state wrongfully withheld from me while they argued that I wasn’t “disabled enough” and could do “some unskilled work”, even though my medical records and my work history told a very different story?  On what day do I feel vindication and validation?

And what happens after if I don’t?  What happens if the judge does not offer me vindication and validation and $21,000 in back-payments?  What happens if I can’t work but the judge says I must?  What happens if I can’t hold down a “real” job for any significant length of time?  What happens when my physical and mental state deteriorate as I lose time for self-care and therapies and coping strategies that are essential to my wellbeing?  What happens when I become what I was three years ago—a bed-ridden mess of pain and mental anguish?  What then?

The part of me that needs to prepare and create order and keep things neat feels like she is being drowned.  She is choking on the unknown as she tries to remember how to breathe.  She is suffering and dying.

The part of me that is laid back and offers peace and love seeks to console her.  She is nearly inconsolable.  No amount of meditation and diaphragmatic breathing and coloring mandalas seems to quell the shaking of her frame.  So, the peace-filled part accompanies the out of control part to my desk.  Together they research and add and subtract numbers, experimenting with all the possible sums and trying to find a way through the chaos.  Trying to determine what the next stage might look like—what “next” might be.

The two parts sit together on the yoga mat, trying to clear my head of negativity and fear and shame and confusion and stress.  The two parts sit together and recount all the things for which I am grateful.  The two parts sit together on the sofa, trying to distract from the chaos by watching Netflix and becoming invested in a fiction instead of hyper-focusing on my reality.  The two parts sit together as I attempt to do nothing, and to go about life as usual—therapy, doctor visits, gym, pool, massage, yoga, meditation, food prep, cleaning, baths, walks, updating the fundraiser.  They try to help me live my life as though it were “normal”, and try to prepare for the worst while hoping for the best.

But they aren’t succeeding in any significant way.

I am stressed beyond comprehension.  I half expect to have a stroke before my court date arrives.  But then the other half reminds me that I have waited for 30 months, I can wait 25 more days.

And the decision on the 21st isn’t necessarily the thing that I fear the most.  It isn’t the thing that might make or break me.  The thing that might make or break me is whatever comes next.

I don’t know if the making or the breaking comes next.

And I don’t know how to prepare for either.

I don’t know how to do nothing.

I am terrified of what comes next.

I’m not sure how to survive the next.  Because I can’t figure out how to be prepared for next.  And I have no control over what comes next.

There is this strange mixture of hope for the future and dread for the future that is happening within my person.  And while I talk about myself as two halves to make the point that both of those are present, I am only one person, feeling all of those feelings, and being both the hopeful and the dread-filled woman, simultaneously.  It is a strange feeling.  It is terrible in many ways.  I feel at odds with myself.  I feel like I am out of control as I fight with my own psyche.

But today I realized that there is reason for hope.  And that reason is my parents.

I get the worrisome and ordered parts from my mother.  I get the laid back and love-offering parts from my father.  And that combination of traits created a long-lasting marriage.  It wasn’t always the perfect relationship, but it was beautiful even through the difficult times.  And it worked.  It lasted until death parted my parents.  Those two parts made a beautiful whole, that endured all sorts of struggles with strength and grace.

My court date falls on the day after what would be my parent’s 48th wedding anniversary.  It comes just three days after the 2nd anniversary of my mother’s death.  The unpredictable chaos of life, and the melding of personalities into a loving relationship are both represented in this week in June.  The caregiver, my father.  The lost mind of one who never stopped striving for control, my mother.  The ways that they stepped and swayed and moved toward and moved back made a dance of life.  It made a dance of the things for which no one could have been prepared.  It made a dance of the struggles, because the two sat together.

I see that which was passed down by my mother and that which was passed down by my father, the two seemingly competing aspects of my personality, and I know that all is not lost.  I know that these two parts can work together to recreate that dance.  To step, sway, move forward and back, and to find the way through even the most shocking and unexpected moments in life.  They found a way.  And I am a part of each of them, so I can find a way also.

Grief hits harder than you might expect in the second year after losing your parent.  I’ve been avoiding that subject lately, preferring to focus on what I need to be doing to get through the next 25 days regarding my hearing, my livelihood, and my important planning for the future.  But today, knowing that I am instructed to do nothing, and that the disability case is out of my hands now, I sink into the truth that it still hurts a lot to be without her—without them together, and the ways that they interacted.  I still have my dad, of course.  And I am so grateful for him.  He is a rock of support that no other can rival.  But I miss my mom.

That is a thing that I was not prepared for.  It is odd, because we had years to prepare for losing her, but I never expected that the mother whom I argued with and struggled to understand and who I strived to please and never gained approval from would be so missed.  That in the weeks leading up to an important moment in my life, I am looking back to the weeks that lead up to the end of hers.  That I would have to look at her picture to remember all the details of her face.  That I would suddenly be relieved that I have nothing to do, because I think what I should do—what I need to do for myself—is to be sad and grieve, and let this season be about more than the dance I am doing internally as I struggle toward my disability hearing, but allow it to also or instead be about the dance of my parents, and the overwhelming emptiness of the space next to my dad, where my mom used to dance beside him.

I’m so grateful that I am made up of the stuff of both of these amazing individuals.  I’m so lucky to be a part of them, and to be their legacy in the flesh.  (As an aside, I am the only one in the family who has a child that carries on the family name—and we are a little bit too proud to be the ones who bear the name of that legacy.)

I still don’t know what comes next.

And I’m still a bit terrified, to be honest.

But having witnessed lives that pressed on through the good times and the bad, in sickness and in health, for richer or poorer, until death parts them, I feel stronger.  I feel a little less helpless and a little more capable.  Because I am the product of those lives.  I am an embodiment of those promises.  So, if they could make it through whatever unexpected trial or joy might be coming up next, I can also do so.

I’ll meet what comes next.  I’ll lean into whatever comes next.  I will overcome whatever is next. Or be grateful and enjoy what comes next.

I am the dance.  The two parts sit together and create a good life out of whatever comes their way.

The two parts sit together and discover what is next.

Sleepwalker

I once, according to my dad’s telling of the tale, came downstairs from my room, obtained a jar of jam from the refrigerator, took a spoon from the silverware drawer, and started to eat jam directly from the jar.  When Dad questioned me, and asked what I was doing, I became defensive.  Whatever was happening in my head, it was determined that jam eating in the wee hours was normal and not an offense of any kind.

And that is a fun little anecdote regarding the sleepwalking of my childhood.

There are many.

My dad also tells tales of other sorts of sleep disorder, however—sleep terrors and nightmares.

Sleepwalking is rare.  Estimates place the percentage of the population that completes complex action while asleep around 1 to 15.  The phenomenon is a sleep disorder, and it is usually associated with either sleep deprivation, stress, or both.  The combination of this disorder with those of nightmares and terrors is even more rare.  It is hard to say how many people might suffer from all three, because the one experiencing the events often has no recall of the events.

In the past few years, I started to sleepwalk again.  While I have no recall of the events, I have evidences of the events.  One morning, bread was laid out on the kitchen island, as though I were preparing to make a sandwich.  Another morning, I woke to toasted bread, still sitting in the toaster but stale and cold.  On yet another occasion, I woke to near-freezing temperatures and realized that I had turned the thermostat all the way down as I slept.

It wasn’t until I mentioned these events to my sleep specialist that I started to understand the presence of sleep disorders is directly related to stress.   And in my case, that stress is related to a loss of bodily autonomy through chronic sexual abuse and medical testing and treatment for bladder and kidney issues.  Usually adult sleepwalking is tied to and triggered by childhood stressors.  My sleepwalking (along with incontinence and suicidal thoughts) returned shortly after a visit from my brother, and repeated arguments that took place during that time.  The insistence that I do as he believed I should, and the lack of respect for me and my autonomy that such insistence belied, threw me right back into that childhood self with symptoms of extreme stress.

Getting along with my brother is an impossible task.  He wounded me in ways that can possibly (I hope) be forgiven, but can never be forgotten.  He created a vacuum in my life that sucked in all sorts of damage, abuse, and pain.  And while some would argue that the “victim card” isn’t a thing that I get to “play”, the fact is that I am a victim of horrible abuse that does not stop affecting me.  And having a perpetrator of abuses in my physical space, and having that perpetrator tell me what to do, is an impossible to ignore affront, whether it is meant to be or not.

People talk about “finding their inner child”, like it is a fun and freeing thing.  But my inner child is terrified, wounded, confused, and under mind-altering levels of stress.  I don’t want to find that—ever.  But I don’t get a choice, because that child finds me on a regular basis.  She returned in a blink of an eye after that visit with my brother.  And she didn’t leave.

I began sleepwalking again because that child started running the show while I slept—the early expression of my post-traumatic stress coming back into my experience.  This is often the case with sleepwalkers.  If we do it as adults, we likely also did it as children.

I don’t know that I eat jam from the jar in my sleep anymore.  But I am definitely exhibiting the stress that I did in childhood within the circadian patterns that I currently experience.

The nightmares I can make go away.

I didn’t know that was possible until a few years ago, when the nightmares were increasing, and the trauma of the past was leaching from me and leaving a trail of symptoms across my life.  It was at that point that I was finally properly diagnosed with C-PTSD.  And that diagnosis brought the beloved off-label use of blood pressure medication which stops the nightmares.  Or, to be more succinct, it stops me from engaging with the nightmares or remembering the nightmares.

Minipress, or prazosin, as a treatment for PTSD, was discovered incidentally by a Dr. Simon Kung at the Mayo Clinic in Rochester, MN.  The medication had been around for decades, but it was not noted as an effective treatment for nightmares due to PTSD until 2012.  Thankfully, I receive medical care at a teaching hospital that uses cutting-edge treatments, and I started on prazosin mere weeks after my diagnosis. My brain can still engage with flashbacks and nightmares, but my body is prevented from interacting with that engagement, and I remain asleep and unaffected by the subconscious terror.  It still amazes me that this is possible, after having interacted with this terror for over 30 years.  I am in awe that we can simply shut off that terror during the night.  And I am extremely grateful for Dr. Simon Kung’s work to find, study, and disseminate the knowledge that I, and many others who suffer PTSD symptoms, can experience peaceful sleep.

While the medication doesn’t prevent me from sleepwalking, it makes my sleep much more consistent and much less traumatizing.  Having sleep, the restorative and balancing action your body requires, become a source of fear is a terrible thing.  And being able to participate in and enjoy sleep is nothing short of miraculous for my beleaguered and exhausted self.

I feel like this turned into a term paper, and not a blog post.  But it is important, apparently, for me to recognize and report about the challenge of suffering symptoms of stress and trauma during the night … and to present alternatives.

Because, as someone recently told me, people need to hear my stories.  And I am committed to the telling not just because I think it might assist others, but because speaking truth is freeing.  Expressing the challenge and the need and the struggle and the fight and the overcoming of obstacles and the strength and joy and relief of that overcoming is important.  It is such because my voice is my only chance at regaining the autonomy lost as a child.  My voice is the only thing that can offer that child some peace and restoration.  That young self, and my triggered adult self, both need to know and feel and trust that there is a path to good, and that we can walk that path and find that end.

I might make sandwiches or eat jam from the jar in the night for the rest of my life.  I might, just as easily, find the release of stress that I need to stop that sleepwalking from happening any longer.  And it is necessary for others to see this hidden-by-the-dark experience, and to validate that experience.

Because while I don’t fault those in my life for not knowing that I was expressing in my quirky sleepwalking moments the grave burdens of an abused child.  The science wasn’t there.  The advocacy wasn’t there.  The skilled psychiatric specialists were not there.  The only thing that my dad could see was a girl doing weird things—expressing the inexpressible in the ways that my subconscious self could.  And it couldn’t express it well enough, or loudly enough, or clearly enough to spare me the trauma … but at least I tried to express it in some way.

I can express it now.  I’m determined to express it now.

I’m determined to give that child a voice that can be heard, understood, and validated.  I’m determined to let her speak, to cry, to scream out the things that her jam-eating, sleepwalking, nightmare-having self couldn’t quite manage to express.

That little girl experienced chronic, escalating, sexual abuse.  That little girl also had doctors and nurses poking around in her most sensitive and sacred parts without any sort of trauma-informed care.  That little girl was lost in a sea of pain, and she nearly drowned in those deep and dark waters, as the waves beat her and threw her against the rocks.  That little girl needed to say that she was dying from the weight of trauma and shame and conflict and fear and confusion laid upon her tiny chest—crushing her ribs, puncturing her lungs, and making it impossible to breathe.

That little girl also needed others to hear her and to offer validation and to acknowledge the injustice and offer hope and comfort and help.  She still needs that.

I try to offer it to her.  But it is hard to trust just one voice (especially when so many deceptions have been spoken in your experience).  It is hard to assure her that she deserved safety and autonomy and privacy and justice and good.

It is hard to assure my adult self—this grown-up version of that girl—that she deserves safety and autonomy and privacy and justice and good.  It is hard to believe that my voice can make a difference.  It is hard to believe that I am heard.  It is hard to find validation.  It is hard to find hope and peace.

But that little girl fought hard to survive.

And I am going to keep fighting her fight.

Breakthrough

Sometimes I write a whole lot of stuff and then I just file it away, never to be seen again.

Unless I die and someone figures out my laptop password, divulging all of the secrets within the “Current Writing Projects” folder, there are thousands upon thousands of words that will never be read by anyone.  And that assumes that whoever cracks my password bothers to read my work.

I often feel like writing for an audience makes my writing rather shitty.

In my undergraduate studies, I got a less than fabulous grade in my advanced expository writing course, even though many in the class considered me a fabulous writer.  But I didn’t follow the process that my professor so wanted me to adopt.  My first draft was never handed in on time, and my final draft was usually my first draft with more words tacked on the end.  His process, I believe, was not how I wrote well.

Now, that professor and his colleagues and his many protégés would likely argue that I can’t be writing well if I am still handing in rough drafts.   But I made it through two master’s degrees without a second draft.  And I still feel as though writing in ways that aren’t very stream-of-consciousness, throw-words-out-without-thinking, and blurt-whatever-comes-to-mind are ways that are less successful for me.

I may be wrong.

That happens surprisingly often, given those aforementioned multiple degrees.

But even if they are correct, and my writing would be improved by having a more traditional, tested process, I can’t seem to do it.  Or, more accurately, I can’t seem to love it.

My whole life is sort of like this, I think.  The more traditional and tested, the less enjoyment I experience.  I’ve always been the headstrong, impulsive, unbound type.  And the moment that people set expectations and made rules to hold me in, I suffered.  Some would imagine that the impulsiveness and the chaos of anarchy were what hurt me.  But I truly believe it was being caged that broke me, not being capricious or catapulting into life.

I know that some of this stems from the unhealthy personal history of which I sometimes share bits and pieces.  Feeling captive—being captive—made me desperate for freedom.  I needed to run.  I needed to fly.  I needed to be shot out past the orbit of Earth and end up in the sky, preferably somewhere amid Cassiopeia.  I’m not sure why.  The queen has simply been the place I wanted to be since we had a star-gazing event in the rural backyard of my grade 6 teacher.  That constellation beckoned.  The moment I could, I ran, I flew, I threw myself toward the heavens.

But there were always new sets of rules and people who tricked me into believing I wanted to be caged once more.

This weekend, I read a lovely bit of my daughter’s writing.  She wrote about me.  And she wrote about how I became tethered to the ground by my own body and mind—how I lost my confidence.

I spent all that time seeking to be free, and then my own body and mind caged me.  I finally broke out of the orbits of family, partner, religious tradition, patriarchy, and expectations that were not meant for my good but for my compliance, and the thing that pulled me back down was my chronic illness.

I haven’t been myself in a really long time.  Some days I don’t even know who that self is, or how to find her.  The weight of fatigue and pain and mental anguish grounded me in ways that nothing and no one else could.  And that devastates me.

And suddenly, all I want is to run, to fly, to be thrown to the heavens.  But I don’t even know how to begin.

Caged.  Subject.  Tethered.

Some would say that as age sets in we become more “grounded”, and they mean that in this sense where you gain stability and live out your years with calculated and wise decisions.  And when any of us stray from that trope, we are cast into another—the mid-life crisis sufferer.

I’m in that forty-something stage that may or may not be mid-life.  I’m not average, so I cannot expect that my life span will hit the average either, frankly.  And some people might think that my recent propensity for bright-colored hair or new tattoos or parties with my daughter and her friends or casually dating a string of inadequate suitors are symptoms of this mid-life crisis.  But those people would be wrong.

My desire to find myself again, and gain my strength, and live unfettered and free, and restore my confidence, and be the kind of woman I love to be is leading me down the road I am travelling.  And that is not a crisis.

That is a breakthrough.

That is me learning to own the parts of me that existed before and between cages.  That is me learning that the Christy who fought to be free is the Christy that is naturally occurring.  That is me learning to fly once more.

I may not be good at careful and calculated.  I may not be good at decorum and expectation.  But I am good.  And I am best when I am set free—allowed to embrace my own way, and to chase my dreams without the weight of expectations, rules, secrets, tethers, and ties.

I think that this journey began with me crawling from a pit of despair, and I have a long way to go before I can spread my wings, but I am on that journey.  My feet are on a path, and that path is leading to my best self—no matter what the critics say.

And I am starting to believe that I can one day make it back to the queen in the sky.  Soon I will remember how to fly.

Wide Awake

I woke to a crash at 5:00 this morning.  My daughter’s cat has finally managed to do what I have been anticipating for some weeks now—she broke some shit.

I investigated the crash and found that the beautiful orchid that was thoughtfully gifted to me after my recent hip surgery was currently lying on the living room floor, surrounded by chunks of clay that now resembled an exhibit in a museum rather than a pot.

Thankfully, the orchid itself was mostly intact.  Though, being a living thing, it has the opportunity, as do all living things, to experience shock, so we shall see if the trauma of being knocked to the ground has a negative effect in the coming days.  (Fingers crossed that it stays beautiful and blooming for a long time.)

I swept up the bits of pottery and a bit of dirt.  I put the orchid into another pot and placed it back onto the television stand where it resides.  And then I tried to return to the warmth and comfort of my bed to sleep again.  But the cat had started a chain reaction.  Because I was awake, the dog assumed it was time to be up and about, so he continually nudged me and licked at my hands until I gave in to his demands and took him outside.  And then, because we had begun the morning routine, he decided he should also have food.

While feeding him, I realized that he was out of water, so I filled that.  Then the idea of water alerted me to the extreme dehydration that was causing my tongue to stick to the roof of my mouth.  I drank two glasses of water and, when that didn’t seem like enough hydration, I downed a Gatorade.  And then, after using the bathroom, I went back to my bed once more.

But sleep would not come.  I was now wide awake.

As is customary, I began to think about all sorts of things while I laid there hoping for sleep.   I have medications that help me sleep at night.  I take the first at 7:00 pm, and take the last at 9:30.  There is a complex system of getting my brain and my body into a sleep state.  Sleep doesn’t come easy for me because of a few illnesses that I cope with, but I have developed a great system over time, and most nights sleep comes with relative ease.

Morning is another story.

Once I had begun the routine of the morning, I couldn’t get back to sleep.  And, while my brain wasn’t as functional as I would have liked—I sent a text to my daughter that said “don’t gorget” when I meant to remind her “Don’t forget to ask about time off for xmas”—I decided that if sleep would not find me, I would simply get up and do things.

The words “wide awake” kept returning to my mind in the semi-dazed moments when I was still struggling to sleep.  And while I can understand the connection in the literal sense—my inability to sleep—there was something beyond that use of the phrase that kept coming into my consciousness.  I couldn’t help but think about what being wide awake means in a more proverbial sense.  I couldn’t help but think of how I became the person that I am today, and how that person is one whom I consider “wide awake”.

People often use the word “enlightened’ as an insult when they respond to what I post on my blog or my Facebook page.  Many seem to take offense when I express my views, and they react by making sarcastic and rude comments.  A fair amount of those comments includes mocking my “enlightened” state.  This past week, I had multiple people slinging verbal attacks at my blog comment section.  And those attacks included that term “enlightened”, used as a pejorative and not a compliment.

But as I laid in bed, and remained wide awake, I had the overwhelming feeling that enlightened is exactly the correct statement to describe me.  I am wide awake.

Let me elaborate.

I have been through transformation after transformation.  And some of those transitions were not easy or came at great personal cost, but life doesn’t easily become other.  We like to stay in our little bubbles of safety and familiarity and commonly held understanding.  We don’t like change.  We certainly don’t like change that takes deep thought, definitive action, and amazing strength.

I never had the luxury of a bubble.  The place that is safe and familiar and commonly held never existed.  And that safety and familiarity will likely never come to fruition.  Mostly because the amygdala doesn’t heal after long-term exposure to abuse, fear, stress, and captivity in developmental stages.  You just keep on being in fight or flight or freeze mode for what seems like eternity, but is actually a lifetime.  Some people might comment here about how devastating and sad and sorrowful that mode is, and how it needs to be fixed.  But they would be wrong.

Here is why:

I’m always afraid, but that fear has made me capable of enlightenment—not in the pejorative sense, but in the literal sense.  I have been given this strange and difficult story to live out.  But because it is strange and difficult, it offers me reflection and recognition that many do not experience.

I’m wide awake.

When you see things in the light which I have seen things, you need to change the way you think.  You cannot come into contact with new ideas and different experiences and come out the other side with the same thinking you had before those things happened.  You cannot see what I see and know what I know and not change the way you participate in life.

I’m an addict.  And many people I know would say that this is a choice—a moral failure on my part.  But those people are not addicts.  Addicts know better.  We know that there is no amount of choice and will power that can keep you clean or sober in an environment where drink and drugs are present.  We know that this is a chemical imbalance in the brain, and a weird reaction in our pleasure center hastily throws us into the rock bottom of substance abuse.  We can manage this disease.  We cannot cure this disease.

I’m a divorced, single parent.  And many people would say that this, also, is a moral failure on my part.  But those people weren’t living in my household, with my abusive partner, and experiencing the terror of never being able to control what happened to me.  Domestic violence survivors know that you cannot go back and start over.  We know that the violence escalates, and it doesn’t reset at the beginning when you reach a terrible end and decide to “try again”.  Instead, you pick up where you left off—in a terrible state and creating greater and greater catalysts for further violence.  Sometimes you just need to leave.  Sometimes your life, and the life of your children, depends on you leaving the violence behind.  But that isn’t easy.  Domestic violence survivors know this.  And those still in abusive relationships know this too.  Because when you have been manipulated and conditioned in ways that leave you isolated and without resources, there isn’t a safe place to go or to be.  It is much harder to start life over with nothing than it is to stay and suffer through the abuse, in many cases. We know this.  We cope with this.  We cannot “fix” this.

I am disabled.  People constantly misunderstand or deny that fact.  “Get well soon”, is an offensive statement.  Because I know what it is to be in pain every hour of every day and night.  I know what it is to have to mourn the life you planned and worked for and ran toward.  I know what it feels like to always be unable and to always feel insufficient and to constantly be in need.  It doesn’t feel good.  And the people who say “get well soon” and who suggest I edit my life or my lifestyle in particular ways do not know that feeling.  They don’t have to mourn the loss and feel the pain.  So, their “solutions” are not only impossible to carry out, but they are reinforcing the idea that I am faulty, not good enough, and not accepted as I am.  I understand this disability in ways that most never will.  (And thank the Divine for that, because I don’t wish this experience on anyone.)  I manage this disability.  I work to be my healthiest self.  I cannot get rid of the disability.  I can’t “change it”.

I am pro-choice.  This is one of the things that makes so many people use the term enlightened in sarcasm and mockery.  This makes so many people think I am a moral failure.  But I live in spaces where choice is essential.  I live in a space of poverty.  I live in a space of fear, of scarcity, of abandonment, and of desperation.  And I should never be forced to bring a child into that space.  I was molested, assaulted, and raped.  I know what it is to not have agency in your life.  I know what it is to not have agency over your own body.  I know what it feels like to be used and owned and threatened and left alone in shock and disillusionment, because other people didn’t listen when I cried out for help.  So, I know what it is to need control over your own body and your own life and your own choices.  Because I cannot let another determine what happens to me.  That cannot happen again.  I cannot have someone else control me—not after all that I have endured.

I’m wide awake.

I understand why people reject my ideas.  I understand that they cannot see from my perspective.  I get why they don’t want to hear and accept and work through the things that I say or write.  It is hard work to change the way you think and behave.  It is hard work for me too.  But I know that I need to keep living my life with eyes wide open, and accepting even the most difficult and dangerous of facts and stories.

I didn’t get where I am today without struggle.  Struggle was often the catalyst for change, because I was shoving myself forward in ways that meant I met many others on my path, and I encountered facts and stories that I couldn’t have encountered if I hadn’t been on that path.  And my path is a rare path.  Not many travel through all the levels of hell that I have walked through.  So many have not had the terrible blessing of a hard life with life-altering experience.  It is awful and wonderful.

There is a quote that I think might be helpful to increase understanding here: “It was the possibility of darkness that made the day seem so bright.” ― Stephen King

For those of you who prefer religious text to horror and suspense novelists, there is also this passage from Ephesians 5: “but everything exposed by the light becomes visible, for everything that becomes visible is light.  Therefore, it says: ‘Awake, O sleeper, and arise from the dead, and Christ will give you light’.”

I am wide awake.

Many people look at the darkness that is expressed in my posts.  They think that these supposed “moral failures” and the challenges that I face are evidences of evil, and of a need for change.  And maybe I got to this place because of darkness, in some sense, but that darkness made the light possible.  I shine out all the brighter because of the dark.  Darkness isn’t necessarily a thing on its own, technically speaking.  It is the absence of light—or of light perceptible by the human eye, at least.   Light shows up, and then we can see clearly, because of the reflective and refractive rays that show up as colors and shapes that we could not discern in the darkness.

Everything that becomes visible is light.  And light is what makes everything visible.  Yes, I know that is circular reasoning.  It is also true.

Here’s the crux of the matter:  I believe that my life is full of light.

I’m wide awake, and the sun is shining down upon me.  It took a while for it to get here, and I watched it rise over the city this morning, but it is now shining down upon me.  And the light shines out all the brighter because of the contrast against the darkness.  Was it devastating and sad and terrible to be harmed in my history?  Yes.  Was it difficult to find my way beyond the pro-life stance that I adopted to fit in with my friends and neighbors and to step into the truth that science and experience offered, becoming pro-choice?  Yes.  Was there much that seemed dark and damaging and defeating in my life? Yes.

But there was also light.

There was love, support, grace, the voice of the Divine, strength, fortitude, passion, and purpose.  There still is.  It just looks a bit different than I had imagined it would.

I’m wide awake, because I let the light of truth transform me, over and over again.  Each time I encounter something that doesn’t make sense, or challenges my current belief system, or shakes me out of dissociative states and requires I be present and thoughtful, or offers a story that has new perspective, I let the light shine upon it.  And that light transforms my ideas, my actions, and my person in many ways.

Last week there were people who called me names in my blog comments, and made all sorts of assumptions about who I am and how I think and what I do.  But today that doesn’t bother me.  Because this morning I was wide awake, and saw clearly (with help from some insights borrowed from a friend) that the upsetting thing about these interactions was not that I am morally bankrupt or doing life wrong, but the upsetting thing is that these people are not letting light shine in darkness.  They are not stepping into truth and letting it transform them.  They are not listening to my story, even though they may be reading my words. And they are not doing so, because it is very hard to do.

Darkness gave me what others lack:  the opportunity to distinguish the dark from the light.  Darkness pushed me toward the path of the light of truth.  Escaping the suffering meant moving toward a new way of thinking and being.  And that way of thinking and being is better than the way of my past.  Truth and light shine in my present and my future.

I’m wide awake.

I understand my situation, and I know my value, and I feel my emotions, and I acknowledge my weakness alongside my strength.  I live in the light, and I seek truth.  If you believe that you can know better, and understand more about my life and my history and my current situation or actions, feel free to make your suggestions, but please do not be angry when I tell you that I don’t need your input right now.  Because I am walking the path of light, shining out in the midst of the darkness, and I don’t necessarily believe that your comments are contributing light.

I know what I am doing.  I know when what I am doing is helpful and when it is not.  I can own the times that it is not helpful.  But I have an awareness regarding my life and my situation that you do not share.

I was recently reading a book from the Song of Ice and Fire or Game of Thrones series.  I was talking with my physical therapist about watching the show versus reading the books, and I told her what I have told others:  I like reading the books, even though I know from the show what is going to happen, because the books offer you internal monologue that the television series cannot portray.

I think that this applies to my life too.  Others can share my experience to a degree, but they are not allowed the privilege of being inside my head, and feeling and knowing and understanding the depth and breadth of who I am and what I believe and why.  You are missing the monologue that shapes the story in important ways.  You are reading from your perspective and not from mine.  And if you do not seek my perspective when you read my words, then you are not practicing the empathy that is required for change and connection.

My perspective is important.  And yours may be too.  But insisting that I do not know my own situation or life experience or whatever else pertains to me, and that you know a better way of being me, simply because you say so (with no facts to back that up whatsoever), is not only uninformed, but it is offensive.  It is offensive because I am an aware, educated, experienced, adult.

There’s more to me than people know.

And I am wide awake—shining light on my life and my surroundings to continually seek truth.

Whatever I am, and whatever I do, I do it wide awake.

And now, I think it is time for a nap. 😉

Plans

Yesterday I received a rude message.  It made accusations against me, because I had posted on Facebook both an update to my fundraiser, requesting donations to pay bills in May, and a request for pictures of items my mother had painted, to utilize at my tattoo consultation.  In the mind of the one offering the rude message, these two things were linked, and I was asking for money to pay for “luxuries” like tattoos.  This is untrue.

And I could probably create an entire book about how paternalistic judgments of how the poor are “allowed” to spend their very limited resources are completely unnecessary and unwarranted and unwanted.  Trust me. The poor have a far greater understanding of thrift and priority and hard work and collaboration and kindness and care than most people.  Until you can hold a single $5 bill in your wallet for two months without spending it on anything, or furnish a household using only the items others discard, or own a wardrobe where every article of clothing was purchased on clearance or secondhand, don’t tell someone with limited resources how to use their money.  They know far more about money and value than you could imagine.

But I won’t focus on the aforementioned paternalistic judgments today, because what I have been pondering more fully is the idea of making plans.

The tattoo artist I met with last evening is booking appointments for January right now.  If I choose to have him do this tattoo (which will be an amazing commingling of what I had imagined as 2 tattoos), that honors my mother and my daughter and covers most of my right arm, I will need to wait until next year before any inked needle pierces my skin.  So, last night we talked about design and created a plan.  I spent no money.  And I used the Facebook comments as a forum for explaining that I had spent no money, nor would I spend fundraising money for tattoos, or any other personal entertainment or luxury items.

But later I was thinking about how great it is that I am even making plans for next year.

When you have as much disease plaguing you as I do, and when you have so few resources that you aren’t sure how you will make it to next week, you could posit that plans are something superfluous, and that the present moment is the only time and place where the focus should lie.

I think that would be a sad position to hold.

Please don’t misunderstand. I work very hard to live in the present moment—to put the past behind and to reduce anxiety or worry that comes from looking forward.  I love the present, and being present in each moment.  Mindful living, where you fully embrace and enjoy each moment as it is, without judgments or adjustments, is living that I am working toward every day.  I meditate, and color mandalas, and do yoga, and work to taste my food rather than devour it, and allow all sorts of sensations and emotions to arise and coexist and leave without trying to change them.  Being mindful in the present is extremely important.

But the future, and living toward it, is also a beautiful thing.  I sometimes wonder if my life will go on for many years, or if my days are short in number.  Especially lately, in the face of testing for early onset Alzheimer’s disease, I think about what my end might look like.  And while I am not worrying over it, and will accept my end with as much grace and compassion as I am able, no matter what happens, I love the idea that I am still planning a future.

I am planning a wonderful future!

I was browsing in a boutique last night.  And the first thing I said to the sales woman when I walked in was, “I have no budget for clothes right now”, but that wasn’t where we left things.  I also told her that I love every outfit that comes up in that boutique window, and I nearly give myself whiplash as my bus goes by the shop, and that one day when my finances are better I will definitely be in to purchase some clothes.  As the conversation continued, at one point I commented, “I in no way believe that my past or my current situation define what happens in my future.  I absolutely believe that I will have better circumstances in the future than I have today.”  The shop keeper echoed my statements, and we had a lovely philosophical discussion about the practical subjects of our lives.  And that moment was filled with hope.

Later, while I was walking down the avenue, I reflected on that conversation, and on the earlier tattoo consultation.  I decided that plans are a sort of miracle for me, and likely for people with situations similar to mine.

I cancel plans often.  There are many days when my health hijacks everything and leaves me in a state where I cannot do what I had planned to do.  But despite the fact that I cancel often, I keep making plans.  I could sit at home every night rather than disappoint others and upset calendars with rescheduling.  I don’t.  I keep placing meetings and social events and mating rituals into the little boxes that frame my time, even when I know a good percentage of those boxes will later be altered.  I keep living, even when life isn’t easy.

Realizing that I keep living in these little ways brought up thoughts of long-term planning.  And I also noted that I have long-term plans.  I plan on having a home filled with things and people and animals I love.  I plan on growing old.  I plan on getting married, or living in a long-term partnership.  I plan on being near the beach.  I plan on having resources.  I plan on finding a way to create art that funds my existence.  I plan on having enough and not feeling any lack.  I plan on having a full and rewarding and beautiful life.  I plan on being covered in tattoos!

There is so much future hope in the way I live today.  And, interestingly, I find that the more time I spend focused on being present in this moment, the more positive my plans for the future become.  The more meditation and mindfulness exercise and mandala coloring I do, the more full and rewarding and beautiful my future life seems.

A few weeks ago I had a date with a man, and when we eventually got around to setting a second date, he followed up the planning with a “we will see what happens” comment, that sort of felt like it gave him permission to flake out on the second date.  At the point when he began to flake on the second date, saying he was still stuck at work, I abruptly ended my connection with him.  I didn’t do it to dump him first, or because I thought he didn’t like me, but because he seemed to be in this space where “we will see what happens” trumps “we will”.  I didn’t want to be in that space with him.

I want to live in a space where planning for a great future happens, and speed bumps are slowly and carefully overtaken, but that doesn’t make me turn away from the fabulous things I see ahead. I want to live in a space where the best and the most and the loveliest are assumed.  I want to plan for a life that is outrageously good.  And I want to put all sorts of energy into the present, in order to fight for that future.  I don’t want to see what happens.  I want to shape what happens.

This week has been filled with conversations with a lovely woman.  And she and I have been looking for a time and space where we can have a first date.  And while there are no plans set in stone, and no little boxes on the calendar that currently hold her name, we both see only a future where we get to spend time together.  “We will be in touch.”  “[We will] talk soon.”  “We will find a good spot.”  “We will do that another time.”  “I will teach you about that.”  “I will show you when I see you.”  “I’ll tell you that story when we go out.”

A future planned together, even without definitive plans, is far superior to not committing to anything that might sound like a plan for a shared future.  And a future planned with good things and fullness and love is far superior to waiting to see how things transpire and what life hands you.

For many years now, I have been a “we shall see” type of person, who would wait for what life handed her and then cope with the consequences.  But the last couple of years have brought about something new.  They have brought out the “I will” person.  And she plans for the best possible future, even while the present threatens to overwhelm her and the past pulls at her ankles, attempting to drag her underground.  She assumes that better things are coming.  She believes that life will offer her more.  She knows that the divine wishes her survival.  She knows that she is allowed to—meant to—thrive. She makes plans.

I make plans.  And they are not based on what I currently see around me.  They are based on what I know lies within me.  And what lies within offers all beauty and fullness and goodness and grace and love.  That is the future I am planning toward.

So, on a day next year, I will have Joseph add some fabulous ink to my right arm.  And I will pay for it with money I have earned, either through my slow and steady work or through my long and arduous fight for disability payments.  And I will shop in that little boutique, and take some of those coveted clothes from the mannequins in the window and put them on my body.  And I will weigh less and cope with my illness more. I will be more self-compassionate and I will trust and love others more than I do today.  I will have an amazing partner, and get married in a pink dress, and live on the waterfront, and travel to beautiful places and have money in my bank account and on and on and on…

Because I plan to live the best and most treasured life I am capable of living.  And even with over twenty forms of illness to live with, I am confident that I will be capable of living in amazing and wonderful ways.  If at some point those plans need to be cancelled, so be it.  But I’m not going to cancel a beautiful life before I have planned one.

I’m going to plan one, and do my best to see it through, with every little box of time containing something or someone amazing.

With every little box marked “LIVE”.