Bully

When I was a girl, I suffered from a medical condition that made it impossible for me to maintain control of my bladder.  I had a major surgery just before my tenth birthday that corrected this issue, but up until then, I was tortured by classmates and neighbors.  I was less than ten years old, and I vividly remember one neighbor picking up a rusty nail from a parking area across the street from our homes and suggesting that “we shove this up there so you can stop peeing your pants”.  I remember the taunts of “Christy Pissty”.  I remember being isolated, depressed, ashamed.  This is what children did to me.  Children that were seven or eight years old did this to me.

Where did they learn that hatred and violence?

In the fifth grade, after the surgery and the pant-wetting had stopped, there was this girl, Tammy, (her name is not changed to protect her identity, because she was a fucking terrible person then and she doesn’t deserve my protection).  (Also, I may be spelling her name wrong, but I have no desire to remember the correct spelling of the names of those who tortured me.)  Tammy was friends with Shawn.  Shawn had been my friend for many years, because our parents were friends and we grew up together.  Tammy had the strange idea that three persons cannot be friends together.  I’ve never understood this whole “best friend” thing, and feel like there is more than enough love to spread around.  Lots of girls somehow get an impression that this cannot be true, and that they need to secure the best friend status of one other, and eliminate any competition.

Tammy convinced Shawn to run from me on the playground.  Tammy took the time to create hand drawn cards for both Shawn and I, and then to deliver the whole cards to Shawn through the Kindergarten “mail” that was teaching them how to address letters.  I received a very large package through the Kindergarten mail service.  Everyone crowded around to see what I had been sent.  It was the cards, identical to Shawn’s, ripped into tiny pieces—a pile of hatred on display for everyone in the room.  Everyone laughed and taunted me.

Where did she learn this hatred and violence?

In high school, I became a nomad of sorts.  I didn’t connect with a single group of peers, because I had grown to mistrust people.  (Shocking.)  But I still wanted friends, obviously.  And many people failed me in this stage as well.  I would hang out with a group of boys that were nice and fun to be around, so people called me a slut.  I still had the influence of Tammy.  One Sunday night, I waited by the cold, drafty window that faced the street for my friends to pick me up to go out.  They never arrived.  “There wasn’t enough room in the car” was the reason that Shawn gave.  But they abandoned me, without a word.  Shawn felt the guilt and told me the excuse, but the rest didn’t seem to care.  And somehow I had been singled out as the one who wouldn’t go along.  I was the one crying tears of pain and loss and confusion all night.

Where did they learn this hatred and violence?

I thought college would be my respite.  New friends.  New opportunities.  It was going to be new and different and better.  And it was for a few months, until I started to have memories of childhood sexual abuse.  I confided in a few people.  Those people told other people.  Those people asked friends of my abuser if he had abused me. They asked him.  He said no. (Shocking.)  And I was immediately called a liar and a fraud and all sorts of other things.  I was once more isolated and shamed and abandoned.  I had failed my way out of college by the 3rd semester.  Not only was I finding it very difficult to find and maintain healthy relationships, but the lack of support made the weight of dealing with the memories and nightmares heavy enough to break me.

Where did they learn this hatred and violence?

I proceeded to live out my pain.  Drinking, sex, drugs, harboring runaways, and finally marrying a man who was violently abusive.  He never hurt me while we were dating.  It wasn’t until a month after our wedding that I was first physically smacked—backhanded in the kitchen while I washed dishes.  But the ways that he harmed me weren’t just physical.  Cycles of abuse include manipulations that most cannot imagine.  It is more akin to a cult than a relationship.  Isolate, degrade, shame, and then, once control has been gained, violence against your person.  Getting pregnant gave me the reason I needed to leave.  I would have stayed until I died, I suppose, were it not for the fear that my child would learn to be like me, or like him.

After I left him, I continued on the path of addiction and struggle, even getting involved in a less violent, but just as controlling and unhealthy, relationship.  But even after I left this second relationship, and I worked to regain control of my own life, and to find some peace and some safety and some stability, people kept being bullies.  Church friends would judge me.  Family would challenge me.  Poverty became a reason to treat me poorly, and being a single parent became a reason to shame me.  There was always someone, somewhere actively working to harm and humiliate.  There was never a place where I was safe from harm.  I was always attacked, in some form.

Where did they learn this hatred and violence?

I’ve gotten to a point where I can mediate between the world and my heart in more effective ways.  I’ve been in therapy and on medication for a few years now, following my diagnosis of PTSD.  I’m learning to care less about the things others say and do.  I’m learning to find self-compassion and self-definition, instead of relying on others to tell me who I am and what I am worth.

I still have the occasional bully in my sphere.  It is difficult to get rid of them altogether.  There are so many who are pursuing their self-interest at the expense of all others.  There are so many who are looking at their decisions only from their perspective, and ignoring the impact that exists beyond their own interests.

Where did they learn this hatred and violence?

And it is hatred and violence to ignore the plight of others in order to gain more money or status or freedom or stuff for yourself.  It is hatred and violence to isolate, to shame, to deny equal rights, to deny basic human rights, and to ignore the pain of others.

I was raised in a conservative religious setting, and I obtained two seminary degrees, so I often default to the bible when I look to quote something that expresses the ways that actions are rooted in hatred and violence.  The Good Samaritan parable of the enemy of the harmed caring for him when his own religion and state and race abandoned him to death is one of those very easily quoted parables.  Your own interests are not good excuses for not caring for others is the basic lesson in that story.  But there are also many passages that talk about putting first the interests of the poor and the refugee and the sick and the imprisoned and a host of others who may be marginalized.  There are also many that speak to the judgment that will come down upon those who do not have love as the basis of their actions.

I often find it ironic and sad that the place where I grew up, and the people I know from my history, were often so filled with hatred and violence while they assumed they were in the role of the good Samaritan.  They thought they were the hero in the story.  But they were not and are not.  They are the villains.  They are the bullies.

Since the election the other day, there have been numerous reports of hatred and violence.  Swastikas and n-words and the simple moniker “Trump” have been graffitied everywhere from the sides of cars to the doors of prayer rooms.  Muslim women have stopped the religious practice of wearing burqa or hijab out of fear.  Children are taunting other children, with deportation or isolation or death being named as the fate of brown and black and Muslim students.

Where did they learn this hatred and violence?

They learned it by watching a bully become the president-elect of their country.  They learned it from the rhetoric they hear in the news and around the dinner table.  They learned it by watching the adults in this country make the grave error of choosing a man who spouts hatred and incites violence at every turn as their leader.  They learned it by living in a society that places self-interest above the health and vitality of the society.  We would rather burn with big screens than live peacefully with one another and share resources.

Donald Trump is the Tammy of my current situation.

The threat to end healthcare for millions is a real threat for me. I am chronically ill.  I qualify for Medicaid under the expansion required by the ACA.  I will not have healthcare if that is repealed.  And, without the other ACA requirement of insuring people regardless of pre-existing condition, I will likely be uninsurable.  I’ve had about 200 appointments and four surgeries this year.  I take 18 medications right now.  I see between two and seven doctors per week.  All of this care keeps me in a state of disability, but a rung or two up the ladder from death.  Without this care, I will drop down to the death rung.  I die.

Without food stamps, without insurance, without housing assistance, and without disability, I die.  Losing any one of them will potentially cause the loss of all others.  My life is in danger, because we (and by “we” I mean the electoral college and don’t include myself at all) elected the bully.

When I was left crying that night by the window, left behind by my “friends”, I am relatively certain that all the people present didn’t want me to be abandoned and harmed, but at least one of them did. And by following the lead of that person or persons, friends that had been such for a lifetime were lost.  The effects were devastating, and each person who went silently along in that car was responsible for my pain, because they didn’t put an end to that pain.

Taking stock of my life, and seeing the ways that bullies operate, and the ways that their actions affect others, I am trapped in a serious situation once more.  After living through all the things that I have lived through, and enduring all the struggle while another profited from my demise, I see clearly the ways that electing a bully will impact the nation.  The people who have let this go on, and who have elected a bully, are committing themselves to the ideals of bullying.  They are allowing hatred and violence to win the day, and to rule the country.

I need to ask you, are you going to be the boy with a rusty nail, or the Tammy, or the abusive husband, or the manipulator/cult leader/champion for hatred and violence?

My childhood, my teens, my adult life—every moment and every experience—could have been radically different if the people around me had not been conditioned to consider themselves before others, above others, and in control of others.  The people around me learned it by watching other people (probably their parents) adopt and embrace individualism and reject care and compassion and empathy for others.  Whether you are using the choices one makes or the color of one’s skin as the litmus test for whether you shame and isolate and judge and harm, you are doing harm.  By considering only your own interests, you are doing harm.  By leading with your fear and reactionary instincts, instead of using facts and thoughtful consideration, you are doing harm.  By voting for a bully, you are doing harm.

Where did you learn such hatred and violence?

And why don’t you seek to unlearn hatred and violence and, instead, live in love and peace?

Why do you choose to remain the bully?

 

More Than I Can Handle

 

There is this common statement among those who choose a Christian religious base for their belief system.  I hear it often.  I hate it more every time it is said.

“God won’t give you more than you can handle.”

I call bullshit.

I am dealing with more than I can handle.  I’ve been dealing with more than I can handle since childhood. And every day I wait for the moment when pretending at control is overcome by the chaos of being overwhelmed.

So, here is the thing I need to say:  either the Divine absolutely gives out more than one can handle, or the Divine isn’t a part of the equation at all.

Please do not misunderstand and read that as “God doesn’t exist”, because I won’t challenge anyone on that point.  I believe in divine intervention and live a spiritual, but not religious, life.  The existence of some Divine source is a part of my belief system.  And it does not need to be yours.  If you are not religious, I suppose you could ignore this post altogether.  (But I hope you don’t.)

The statement that the Divine will not let you be overwhelmed, however, is bullshit.  I’m overwhelmed right now.  I was overwhelmed two days ago.  I was overwhelmed last week.  I am consistently given more than I can handle.  And if the Divine exists, and I am overwhelmed, then god does give you more than you can handle.  If the Divine does not exist, then the statement is just bullshit from the very first word.

I’ll try to elaborate without getting into a weird rant or too many details.  When I was a child, I was sexually assaulted repeatedly.  I couldn’t cope with that.  It was too much.  And while my actions were often a cry for help, they went unheard or were misunderstood, so I was marinating in more than I could handle.  I was feeling so much pain and shame and confusion that my brain literally stopped knowing about the sexual molestation.  I had a complete dissociation from the events.  My brain shut those events and any and all memories of those events down.  They were tucked away in a place I didn’t have full access to, and they didn’t become known to me in a conscious way until my first year of college.  And when I became aware of those events once more, it was more than I could handle again.  I became depressed, suicidal, and easily enraged.  I was a mess.  I dropped out of college, moved away, dropped out of another college, harbored a runaway, became a drug addict, and got married.  All of these events were too much to handle.

My husband was violently physically and psychologically abusive.  I got pregnant, got divorced, had my baby, went on a blind date, and started a relationship with a man who influenced my return to drug use and eventually became physically abusive, as my ex-husband had been.

Too much.

And then, it would seem, I “got it together”.  I worked hard, cared for my daughter, went back to college, got a master’s degree or two, and ended up working in Chicago.  While these years seemed like the most excellent years of my life to the onlooking outsider, inside of me there was just as much struggle as there had been in years past.  I smoked a lot.  I ran often.  I did everything asked of me, until I could not do it anymore.  What most don’t know about those years is that my kitchen was a mass of dirty dishes half of the time, I was drinking too much, I was fired as a teacher’s assistant because I didn’t have enough time to read and grade papers. I failed a few classes. My daughter resented me for leaving her with others and not hearing her needs often or well.  I was struggling to keep it together, and looked fabulous on the outside, while the inside was being ripped and torn into ugly, bloodied chunks of flesh.

I had become a master of pretending at a very early age.  It took a lot for me to fall apart in front of people.

But behind closed doors, nightmares and weeping and screaming and praying and begging for the pain to end kept on happening.  They didn’t stop as I grew up and developed and became a “responsible adult”.  They just got pushed under layers and layers of façade.

Around 2010 was when things stop staying hidden.  I couldn’t control it anymore.  Tears would come at the most inopportune time.  The lack of sleep from nightmares and insomnia was causing my body to suffer.  I started experiencing chronic illness, and I started to look and sound like a person without hope—crazed with the desperate state of my psyche and the onset of more and more symptoms of illness.  I was breaking down in front of people, instead of doing it behind closed doors.  And people ran away rather than be sucked into my despair.

It’s hard for people who are not given more than they can handle to watch you crumble under the too much.  They don’t understand it.  And it is frightening.  But what I think is the hardest thing for those people to come to terms with is that the platitude they have believed is not true.  Some of us are given way more than we can handle.

Because some of us are given more than we can handle, we need help.  Help, need, care, and the like are not things that most want to offer, so they cling to the lie and insist that god won’t give me more than I can handle.  But I know that is just an excuse not to get involved in the pain of others.

Empathy hurts.

Walking into the center of another person’s trauma is painful.  Feeling what they feel is terrible, because it is completely and utterly too much.  And nobody wants to feel what I feel.

Nobody wants constant physical and emotional suffering.  Nobody wants to face fears and be struck down and struggle through depression and suicidal thinking and destroy relationships through mistrust and sob with such intensity that you need to sleep for three hours to recover the ability to stand.  And, on one hand, I don’t blame you for not wanting to experience what I experience.  On the other hand, leaving me to suffer alone and offering me platitudes that I know are lies makes me despise you for not standing in solidarity.

Because if you cannot handle what is coming at you every day, and if you are overwhelmed, you need others to help carry the weight.  I have approximately six people who help carry the weight in a consistent and generous and loving way.  One of them I pay, because she is my therapist.

I understand more than anyone how heavy and exhausting and painful carrying the load of my life is, but I don’t have the option to step out from under that weight.  I have to cope, shift, manage, and try not to be crushed forever by that weight.

There is another saying—less religious and more true—that I sometimes use.  “Many hands make light work.”

A heavy burden becomes light when there are twelve people lifting, and not just one. I would love for us to acknowledge our avoidance of the burdens in the lives of those around us.  I would love for us to accept that the only way to make things better is to add our hands and help carry the burdens of others.  I would love for us to admit that there is a lot that is overwhelming, and that it won’t go away because we pretend that god makes life easy enough for us (or hard enough for us, depending on your perspective) in relation to our ability to be weighed down.

You don’t keep placing items in a grocery bag until it breaks.  You open and fill a second bag.  You disperse the weight, balancing things out and making certain that there isn’t too much pressure in one spot.

(Yes, I just unintentionally made a grocery bag analogy to suffering.  But I can’t really think of a better analogy right now, so it stands.)

So, we are given more than we can handle.  Which is why we need others supporting us.  All of us need others to carry a bit of the weight at times.  That looks different at different times and in different spaces.  But none of us is immune to being overwhelmed.

My life has had too much to handle for a really long time.  I get better at handling it through coping strategies.  But I still haven’t worked through all the burdens or had the weight lifted.  I still make valiant attempts at handling it all.  I still pretend I am well while I am carrying immense pain just under the surface.  But I fail all the time.  I hurt all of the time.  I feel too much.  I need too much.  I falter too much.

And my only hope is that others might find their way toward helping, and that hands would be added, and that my burden may become light.  Help me Obi Wan Community, you are my only hope!

I hope that empathy might become something that we embrace, despite the hurts, because it also brings shared joys.  I hope that generosity rules the day.  I hope that we start to dissect the lies that the platitudes reinforce, and come to understand that we need one another to survive.  I hope that we find the strength to share, to respect, to dignify, and to accept.  I hope we leave behind individualism, judgment, marginalizing, and rejecting.

I don’t know that this is an eloquent post.  It is a needed expression.  Mostly, I need to say it, because it is boring a hole through my mind.  But I also hope that it is heard and accepted.  Because I have always known that the Divine isn’t giving me any number of things to handle or not handle.  The Divine gives me an assist when all the things are too much.  The Divine doesn’t give anyone burdens for the fun of watching us struggle.  And the Divine doesn’t give burdens to prepare us for assisting others in their burdens.  The Divine is the opposite of burden.  The Divine is love.  And whatever is burdensome is what we need to fight against, not for.

When racism tears apart a community, we fight against that.  When illness strikes a body, we fight against that.  When fear creates divisions, we fight against that.  When poverty leaves people in the streets, we fight against that.  When little children are violated, we fight against that.  When women are not given a voice, we fight against that.  When gun violence steals lives every day, we fight against that.

And we fight together, in solidarity, and as one entity.  Because there is more in each of those situations than we can handle, and ridding our society of these evils requires our many hands, working together, to unburden the most vulnerable.

I happen to be one of the most vulnerable, because life tossed all sorts of challenges at me, and so my plea for justice—the unburdening of the most vulnerable—ends up being a plea for my welfare also.  I beg for hands to help on a regular basis through my fundraising site.  But I want, today, to express that there are so many more burdens than mine.  And there are so many who do not have hands helping at all, where I have a few.  So, I’m not just advocating for myself.  I’m advocating for all the poor, disabled, homeless, captive, imprisoned, endangered, devastated, depressed, and unsupported victims of all the ills within our society.

Lend them a hand.  Live in solidarity.  Challenge your assumptions and preconceptions.  Dig deep into your heart and your mind, and figure out why you let burdens continue without intervention.  Smash those excuses that keep you from moving toward empathy and solidarity and understanding and care.  Do things that change lives.  Do things that save lives.

And stop saying that god doesn’t give us more than we can handle.  Stop spreading that lie.  Start spreading love.

 

Same

There is this way of speaking that has taken over much of the communication between me and my daughter, and some of my friends as well, I suppose.  We shorten things.   It just seems like a whole lot of flourish and extra syllables isn’t necessary or important.  And while, as a writer, I am a huge fan of the flourish and the big words, in life they aren’t always helpful.

So, when we are thinking, “I completely agree and have a very similar perspective on this issue”, we instead say, “Same”.

I’m in the mood for pizza.

Same.

I can’t believe the state of the world and am grieving deeply over the pain and wounding that is overwhelming millions.

Same.

I wish that I could be in La Jolla right now.

Same.

I’m overcome with grief and don’t know how to express anything clearly, but everything hurts.

Same.

Yesterday I received news of the death of a good friend of my parents.  And all day I was feeling the weight of grief.  I was feeling it not just over the loss of her life, which is definitely significant and important, but also I was mourning the loss of my own mom.  And I was drawing all sorts of parallels between the lives of these two couples and feeling for those going through what I and my family went through a year ago.

All day I wanted to reach out to the daughter of the deceased wife and mother.  But there were not words.  There weren’t words when my own mother died either.  And the platitudes and “she is with Jesus now” assurances helped not one bit.  In some cases, they did more harm than good.

So, in the evening, I finally realized that what to say was that there was nothing to say—that nothing makes that pain lessened and nothing changes the complex feelings and nothing brings back the mother that you long for now more than you ever did when she was alive.  And I reached out with exactly that: an assertion that nothing would help and that I wouldn’t pretend it might.  I offered my love.  I offered my listening ear.  And I offered my sympathies.

And she shared a huge piece of her heart in reply.

As she expressed her feelings and her struggles and her joys and her surprise and her pain, I realized that all of these long years, we have been living a parallel life.  As she spoke of her many-faceted emotional state and the journey that she had been on as her mother became sick, her father became a care-taker of sorts, and her mother passed, I could have replied with that often used, “Same”.

We were sharing a history, but doing so apart from one another.

When we were kids we played together when our parents got together.  And it wasn’t as though we didn’t enjoy hanging out, but over time, as we became old enough to not be dragged along to our parents’ social events, we stopped spending time together.  And there were times when we connected over the years—running into one another at Christmas or a special event when we were all present once more.  But those little interactions became cordial and socially acceptable, instead of times when we played with abandon or shared secrets or did all those things that come easy when you are young, but cease to be so as you grow up.

Peter Pan had the right of things, in many ways.  Growing up steals much of the honesty and joy and many of the dreams which childhood allows, and even encourages.

What was stolen from this woman and myself was the opportunity to share our similar journeys.  Until last night, we had not had the opportunity to bond over shared experience, or to support one another.  It took the death of both of our mothers to recognize one another on a path we had been walking together for years.

I’ve been thinking much today about this sameness, and this similarity, and this shared experience.  I’ve been thinking that we all felt the weight of struggles alone, and all of this time we could have been bearing them together.  I have had other childhood friends express feelings that I have struggled with: I’m not enough, I’m not good enough, I cannot compare with person X, I don’t fit in, I can’t do anything “right”, I didn’t want to treat person Y like that but wasn’t brave enough to put an end to it and went along with the crowd.   All of this time, we were all young women (and a few men) who felt alone in our struggle.  We were not alone.

We are not alone.  We are united in this struggle.

The organizer in me wants to shout from the rooftops that we need to come together and fight against our common enemy.  But the pastor in me knows that such a strategy isn’t necessarily the right approach here.  What might be helpful is for me to express continually my struggle, and to allow others the safe space to express their struggle.  Because SO MANY TIMES I find that we are coping with the same feelings, and have so much in common, and could be bearing burdens together.

I’ve said before, and will say again, that I label myself as “spiritual but not religious” because organized religion has left bad tastes in my mouth time and again.  I believe in the Divine.  I don’t name it in terms of a triune god, but I believe.  But one of the things that many religions teach, and that I think is a divine directive, is that we share in one another’s burdens—we carry the heavy shit together to make it lighter.  And for some reason the place where I grew up chants the religion like a name at a boxing match, but also chastises individuals and tosses burdens onto their backs while they whisper behind their hands at the failures of those individuals to carry the load.

It is a sick practice, really.  It is wholly other than the divine imperatives to care for and love and welcome and heal and help everyone—like literally everyone.  All of those imperatives tell us to help carry the load, not toss it on the back of another.

I broke under the weight.

So many people I know broke under the weight.

And still the weight is piled.  My daughter experienced that weight when we moved back to that area.  And I left, rather than have her live in that place and in that way where you never feel like enough and people are constantly trying to hide their brokenness by breaking the person next to them.

Today I see that we can fix this.  Today I see that we were fighting the same war, but we were all at different battle sites.  If we could have been honest then, in our adolescence, and shared how we were struggling, we could have become a powerful force for change.  We could have swept that town of gossip and lies and shaming that keep the focus off of the problems of one, only to shatter the life of another.  We could have united to bear one another’s burdens.  We could have lifted the weight and held one another up and shared a journey.

We didn’t.

But I am committed to doing so now.

The past doesn’t change when we change in the future, but it can transform in some ways.  It has the benefit of perspective, and new perspective can shed light on events, even though the events themselves do not change.  And I am ready to look at this childhood in this place with these people in a new light, and with new honesty and connection and trust.  I believe that looking at it in this way will transform not just the past, but will transform us as women and men who thought for all these years that we were alone in our struggles.  Knowing we were in it together and talking about it together in this later stage of life empowers us.  It lets us acknowledge and release the bad and lets us acknowledge and embrace the good.

And that doesn’t happen overnight.  And some events you don’t get over completely—or at least there are some I don’t think I will recover from completely.  But knowing that the burden is shared, and that I am not the only one carrying the weight of those events puts me well on the way to recovery.

So, here I am, people of my youth (and any other time period, really).  I’m standing open to receive and to offer with honesty, with trust, with grace, and with understanding the journeys—mine and yours and ours—and the events and the feelings and the burdens.  I’m here, committed to change, committed to new life, committed to carrying the weight together.

Let’s all try to open up.  Let’s try to do it before any more of our parents die.  Let’s know that the circumstances of our childhood don’t define us.  Let’s know that molds were made to be shattered in order to exhume the beauty within.  Let’s know that we don’t need “thicker skin” or to keep our business private or to hide or to hurt.  We are allowed to be—in all of our ways of being we should feel comfortable and free and alive.  Let’s stoop under the weights of our friends and neighbors and partners and brace ourselves underneath, helping to lighten the load a bit.  And when enough of us are willing to stoop down and take some of that weight, we all find relief.

Community.  I’ve studied it for a long time.  And I keep coming back to this idea, that burdens are borne together, or we are crushed.  So, in order to survive, we need to start looking at the plights of those around us and responding with the short and effective communication that my daughter and I have come to use so frequently.  Same.

There is a quote I use often, and love from Lilla Watson.  “If you have come to help me, you are wasting your time; but if you are here because your liberation is bound up with mine, then let us work together.”

It is time for us to work together.  In my childhood community, in my current community, in my social circles, in my city, in my country, in my world, and in my universe it is time for us to work together.

It is time for us to understand that the liberation of one is bound to the liberation of all.

We can only be free when we are free together.  We can only bear burdens with all of us carrying the weight.  We overcome only because we do so together.  And we do so together because in many ways we are all on the same journey—not just in the specifics of events or feelings, but in the sense that we are all evolving and developing into a better version of humanity (or we should be, at least).

We are meant to look to the person next to us, to see their experience and their perspective and the events that shape them and to declare, “Same”.  And if we cannot do that, we will be crushed under weights we didn’t imagine would ever be placed upon our shoulders.

I think we see that in the news every day of late.

We join in sorrow over things that were caused by a refusal to bear burdens of another.  Discrimination doesn’t hurt us personally—that is the burden of the gay or the black or the Muslim—so we don’t enter the fray.  And we are seeing the results of that failure to stoop and lift with our fellow human beings.  When we don’t bear the weight together, people break.  But there are consequences felt throughout the entire community when those individuals break.  You can’t escape the aftershock of the seismic events.  So, why refuse to help hold the weight that might prevent those events?  Ignoring the problems of others doesn’t work.

We lift together, or we are crushed.  All of us.  The whole of humanity.  The entire planet.

And saying it that way makes it seem an enormous task.  But it really just starts with us listening and bearing the weight of the feelings and experience of another.  A world full of people caring about the person next to them is a world that resembles what most would see as a heaven or a paradise.

That heaven, that paradise, is achievable in the here and now.

It can happen if you open up and share your journey, and listen well to join in the journey of another.  It will happen if we simply love one another, care for one another, and bear one another’s burdens.  It will happen when we hear the struggle or joy of another and can respond with a genuine agreement.

“Same.”

 

 

 

 

Cancelled

I am scheduled for a mammogram later today.  I’ve spent about the last 2 hours debating with myself about whether I do or do not wish to reschedule that appointment.

I can make it.

But I don’t want to worry about it.

But I feel well enough.

No, I don’t feel well.

But I could push through it.

But my head hurts already, and I think I may be getting sick.

But maybe if I just wait a bit I will feel better.

Except I need to hop in the shower and wash off all of the lotions and deodorants and such from yesterday.

I don’t have the energy for that.

Right.  You don’t.

Okay, I will reschedule.

But it takes forever to get in again, and I have surgery coming up in a few weeks, and then I won’t be able to get out and do it.

 

This isn’t an event that has great significance.  I get a mammogram every year, and the past several years of having them done, plus multiple ultrasounds and an MRI, have left my doctors with some confidence that the abnormal mass in my left breast is not cancer.  So, it isn’t like I NEED to be there today.

But I feel like I am always cancelling things.

It is true.  It is really hard to know your boundaries with fibromyalgia.  My body used to tell me in real-time what it needed.  Now it can take hours, days, and even weeks for my body to express that I have overdone it, and that my muscles and joints and brain function are not going to cooperate with my plans for the day, or the week, or the rest of my life.

This disease cancels life.  Not just the annoying little appointments that we all feel like putting off, but the good and beautiful things too.  Time with friends, celebrating with family, going to events … they are all cancelled.

Recently I created a wish list on Amazon of things that I would love to have to make my life easier and to keep me functioning at a higher capacity. Even those needs had to be cancelled, because life throws curve balls and supports I usually depend on were removed, and my financial situation is dire. I’ve had to ask people to support my fundraiser instead and to offer money to pay the bills and keep me alive.

It isn’t really a bad thing to shift focus in that manner.  Obviously, I consider basic needs of tantamount importance, and I am more than grateful for anything and everything that is offered me.

But I feel like even my expectations for living have been cancelled.

And I mean living is the expectation, not that I expected to live with certain comforts.  I am afraid my life might be cancelled.

This is probably difficult for people to grasp.  And I don’t blame anyone for not understanding the depth of my suffering in this moment, or the challenges that I face, or the need that I experience.  I would not have been able to grasp any of that until the last few years happened, and disease became my life, in some sense.

And cancelling became the way I approach life.

I was watching a video of Brene Brown discussing trust the other day. I only got through half of it because I needed to get on the bus and get to yet another appointment (one I couldn’t easily reschedule).  But one of the key components of trust that she talks about in the video is reliability.  She posits that reliability is doing what you say “over and over and over”.

I am not reliable.

I say that I will do a thing, and then the thing is cancelled, or rescheduled, or abandoned because I cannot do it.  My body and my mind won’t let me do it, so it isn’t always my fault, or demonstrative of my personal character, that I cannot follow through on what I say I will do, but the fact remains—I cannot be reliable in the way Brene Brown suggests I must be to be trustworthy.

When I started to exhibit symptoms of fibromyalgia, I had no idea that I was exhibiting symptoms of fibromyalgia.  This is common.  It takes five to seven years on average for people with this disease to be properly diagnosed.  And because of that it is often difficult to even determine onset.  But when I look back several years, and when I talk with my daughter about our history together, I realize that I was already cancelling life as early as 2007.  She would ask to go to the pool, and I would say we can do that tomorrow.  But when tomorrow arrived I would claim that I didn’t feel well, or that I was too tired, and we wouldn’t swim.  She still resents me for cancelling all of those times.  She understands now that I was in the earliest stages of my illness at that time, and that I didn’t mean to be unreliable and to become someone whose word she could not trust, but she remembers the way that she felt let down all of those times, and all the excuses I made for not following through.  And that pains me, just as my physical body pains me—or maybe sometimes more.

I still cancel, and with much more frequency than I did in previous years.  My disease progressed as it went undiagnosed and untreated for those years.  It got worse when I moved to the Midwest from Arizona, and suddenly climate changes, lack of access to healthful organic foods, and less swimming were affecting my body without me being fully cognizant of the effects of these changes.  And by the time people were taking my pain and fatigue seriously, I was on the sofa for a year and a half.

I’ve fought my way back in many ways, and I spend far less time on the sofa at this point.  But the reason that I do much better at living with my illness is that I am better at setting boundaries and better and listening and anticipating my body’s reactions.  Even though it doesn’t tell me in real-time that it is suffering, I can plan more effectively to make certain that I don’t overwhelm myself.  Proactive scheduling, approaching life in terms of my own needs instead of the expectations of others, and being more aware of my illness and the ways it presents and affects me have helped me cancel less … in part because I try to do less.

But I still cancel.  Over and over and over, I cancel.

It is difficult not to apologize for cancelling.  It is difficult to accept it as a symptom of my illness and not as a mark of poor character.  It is hard to feel like I can be a good person, a good friend, a good partner, or a good mother when I cannot commit to things fully and cannot be reliable.

And I wish that there was some positive spin that I could add to the end of this post—some nugget of wisdom that brings us full circle and expresses the self-awareness and growth and determination that I so love to share.

There isn’t.

This is one thing I have not yet figured out.  I still don’t have a beautiful lesson from this experience. If there is a lesson at all, it might be that I am not defined by my symptoms, but that isn’t the way I feel.

Last night I was crying to my dad, as I was telling him about crying to my dear friend Luke the night before, and saying how upsetting it was to look back on my life, and to have knowledge of all the things I have overcome and all the ways I have survived, and to think now that my own body and the illness that plagues it is that which I am unable to overcome, and the thing I may not survive.  I know, in the logical sense, that my body is not killing me, but what I feel is that I won’t survive because of myself.

There isn’t a way to fight against yourself and win.

There may be a way to fight against your disease and win, but that is much easier when you are fighting a cancer, which you kill in order to save yourself, than it is when the thing that you are fighting is incorporated into your entire being.  My own synapses, my own cells, are hurting me.  I don’t have the luxury of separating out what harms me and what IS me.  They are one.

My disease becomes my life.  Hurting is my life.  Confusion is my life.  Cancelling is my life.

There isn’t a way around that fact.  There is only acceptance of that fact.  Or at least that is the way I currently view things.  And I would love to view them differently, but I don’t know how.

I might still go and have my mammogram today.  I might not.  But either way I will continue to struggle with myself over my boundaries and my unreliability and my inability to be as I wish I were—living without constantly thinking about breaking and ruining life.  Living without always considering dying.  Living without worrying that I won’t make it beyond this state, or that this is how it always will be.  Living without cancelling so much of my life.  Living with the constant challenge of seeking to accept life as it is while simultaneously wanting to improve upon my life.

I know it is a constant process, and I know that it will always be such, and I may never arrive at a destination in which I sit and feel like I have completely accepted myself and my way of being in the world.  And I think it is like that for everyone, the healthy and the sick alike.  But today, in this moment, all that seems to matter is that I have, once again, fought with myself over the desire to cancel and not cancel.

I suppose that is how I must approach this fight—moment by moment.  And I suppose that I will eventually start to recognize both the challenge of making it through an event and the cancelling of an event as good and helpful and right.  Because each time I power through, and each time I cancel to rest, I am making a decision to do the best that I can for myself.  And as long as I keep focusing on that—on what is best for my care and for my survival—I am likely choosing well.  Even if my choice makes me appear unreliable.

And, at the end of this post, I have made a decision.  I will reschedule my appointment and deal with the mammogram another day.  Today, my spirit, and my body, and my aching legs and head all need me to rest and to care for myself by cancelling.  Today, cancelling is care.  Today, cancelling is good.  And, at the very least, I can always claim that I am caring for myself over and over and over.