character

Cancelled

/ christyterese / Leave a comment

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.

When The Pain is All That Is

/ christyterese / Leave a comment

When I was younger I used to write late at night often.  I was a single mother, trying to raise a child and finish college and figure out life all at once.  The late nights and the early mornings were the times I could write without taking time away from my little girl.  Early mornings were usually reserved for assignment completion, since my brain was fresh and unencumbered by the thoughts of the day to distract me.  But at night, the emotions were what flowed onto the page.

I used to write with ink pen and notebook … I suppose most of us did.  But for me it was an emotional expression that needed the feeling, the movement, the flow.  And you could tell whether I was feeling nostalgic or angry or confused by the way the letters formed and the speed with which they formed and the strength with which I pressed the pen to paper.  I wouldn’t have made it through those years without pouring thoughts on paper.

Now I rarely stay up past ten at night and can’t use a pen or pencil for more than a few minutes at a time, so that pouring out has largely disappeared.

But tonight is a different story.

Tonight I am letting it flow, in lots of ways.

The past few days have been an ongoing assault for me.  Early December reminds me of death, and death reminds me of my mother’s death, and my mother’s death reminds me of all the other deaths, and so it goes with grief.  The more loss you have experienced the more deeply each loss is felt, because they tie themselves to one another in some strange cosmic or cognitive way that none of us fully understands.  But I don’t need to understand it to feel it—deeply.

So, I am in the middle of this grief spurt, of sorts, where feeling anything seems difficult and feeling something means feeling loss and pain.  And of course, that is when I jump on the bandwagon of organizers everywhere and comment about the social problem that plagues my country now: gun control.  (I actually could have chosen from any number of social problems.  I wish that would have been a self-evident choice, but there are too many issues here to not name it specifically.)

And then the judges rule.

And by judges I mean people that are not at all qualified as judges or to make any particular judgments about the issue.  Some of them put out a string of falsehoods.  Some of them accuse me of “name-calling” because I use “stupid/classist/racist” as reasons one might think more guns would be better while simultaneously commenting on the number of shootings in Chicago.  None of them do, or have ever to my knowledge, lived in Chicago, mind you.  I do. In an area where gun violence is a constant. So, I am well aware and educated regarding what may or may not be helpful in ending this violence.  And when I tried to fight back and stand up for my views, I was called a bully and treated like I am being a terrible person, or morally corrupt, or some other form of bad.  Except those things arose after multiple people basically said a whole bunch of stuff about how wrong I am and how dumb my ideas are, and I responded with reasoned arguments and strings of facts.  The idea that I am being mean, or bullying others by stating facts and reasoned arguments is ridiculous. The idea that a bunch of people ganging up on me to say how wrong and dumb and morally bankrupt I am, for expressing factual information about gun violence, seems a lot more like bullying than anything I have EVER done, in my entire existence.

I am, by the way, the opposite of a bully.  I learned how to behave politely in the midst of great struggle and to pretend that my world wasn’t spinning out of control from a young age.  I was the one who was bullied, repeatedly and viciously, by others.  I was crying myself to sleep by age 9 and suicidal by the time I was 18.  I’m not the oppressor, but the oppressed.  I always have been.

I remember a time when my daughter was struggling with asserting herself, and in therapy this was something she was working on.  One day, on the playground, she called a boy a name and told him to leave her alone. That boy had been bullying her for months on end, and she finally stood up to him, and she was sent to the principal and I was called to come get her because she refused to follow a teacher’s instruction to apologize.  When I picked her up, I got angry with the principal, and said she most certainly would not be apologizing, and that we had been working all year to get her to voice her frustration and stand up to this bully.  This was a moment of triumph, not a moment of failure, for a timid girl who always ended up under the sole of someone else’s boot.

She learned that by watching me.

There are things you don’t mean to teach your children.  They are a part of you, so they become a part of them.  I always bent to the will of others.  I always hid the secrets.  I always played the part.  I tried and tried and tried to be the perfect daughter, and I failed.  Because perfection isn’t actually a thing. Nobody is perfect, we say, but then we try to force people to be exactly that, and we strive for exactly that. It makes no sense.  I taught my daughter to play the part too, and to not ruffle too many feathers and to not rock the boat, and I didn’t intend to, but she was subject to the same consequences I had been—being abused and manipulated and taken advantage of by others.

So, here is how I know I am not the bully.  I can’t be that.  I never learned how, and I am still trying to learn how.  Every week in therapy we talk about how I deserve to be happy and I don’t need to care what others think and I don’t have to live up to any expectations and I get to choose whom I wish to be.  Every week.  I don’t know how to be a bully.  But I am learning to voice my opinion and not back down and say things without sugar-coating every single word.  And that is met with all sorts of opposition.

It occurs to me tonight, after enduring days of negative comments about me and my thoughts and my action and my words and my ideas and probably the size of my ass, when you get right down to all the comments I have heard in the past week or so, that maybe those other people—the ones making me out to be the bully–are actually the bullies themselves.  Maybe they are so accustomed to people telling them what they want to hear, and to me being polite and diplomatic, that they lash out the moment that is taken from them.  Or, perhaps the converse is true, and those people are the ones being abused by others, and my insistence on maintaining my views without any pandering or trying to be perfect opens up a view to their own insecurities.  I’ll probably never know (especially because I unfriended most of them on Facebook, and I don’t think they have any other way to contact me).

It doesn’t really matter why they reacted in the way they did.  It doesn’t even matter if how I was speaking made them think I might be a bully.  Because the thing I can see, even in the midst of much pain and loss, is that I am not the kind of person they described, even at my worst.  Anyone who knows me well knows this to be true.  My good friends have watched me in the darkest and worst moments, and they know that I am love to the core, and that frustration only comes with pain, hunger, exhaustion, or injustice.  It doesn’t live in my core, but it assaults me from without.  I have the best of intentions, and the kindness of a saint, and love enough to pass it on to even the most desperate and marginalized among us.  Hugging homeless prostitutes isn’t something that you do when you are a bully, or morally corrupt, or without character.  That depth of love and understanding and that level of acceptance is a rare gift, and I am one of those blessed with that rare gift.  And I don’t need someone else to tell me this.  I know who I am.

Even though pain is all I feel and struggle is all I can seem to find these days, I know who I am.  I am not what those people who haven’t seen me for the last 7 to 20 years believe me to be.

Even when the pain is all I feel, I am still looking inside for my value and my worth, not to the outside.  I am finding the voice within and letting it out.  I am the girl on the playground who is fighting back with her words against an onslaught of injustice and being called to the principal’s office for doing so.  And that is fabulous and amazing and good.  That is a triumph!

I know that few to none of my friends throughout the years struggle from C-PTSD, so I understand that they don’t get how important it is to find value in yourself and to let go of the expectations of another and to stand on your own, even if the other doesn’t appreciate you doing so.  But it is extremely important.  Earth-shatteringly important.

The PTSD mind is a mind divided, and often accompanied by a confusion or a lack of knowing the self.  You can’t always—or maybe ever, in the beginning—trust what you feel to be yours and to be true.  Those core beliefs that you have held for your whole life are false, and it takes so much work to root them out, recognize them, and respond in ways that help to break those down.  To find your worth and to let go of shame and to release anger and to love yourself are nearly impossible.

I’m doing those things.  In the face of all sorts of criticism, I am holding on to me, and letting myself feel what I feel and believe what I believe and stand up for both.

When the pain is all you feel, it is really hard to have breakthrough moments like this, or to find your footing at all.  Today I am stomping with confidence, not just finding my footing.  And if other people felt on the bottom of my boot sole, I suppose that saddens me a bit, but not enough to let up right now.  Because I didn’t actually do any intentional harm to anyone, but others did do intentional harm to me.

Earlier this evening I posted that you cannot offer violence and expect peace in return.  This is how I feel about my whole life, not just the past couple of days of comments.  I was offered year upon year upon year of violence, and it is a wonder and a joy to know that I was not so damaged by that to deliberately harm others, or to deliberately harm myself, or to end my life, or to lose my mind completely.  I was repeatedly offered violence, and ninety-nine of a hundred times, I respond with peace.  That is a lot of peace, under the circumstances.

I am not a bully.  Even when the pain is all that is.

So, I end the night and begin the morning having peace within once more.  The assault of depression might linger for some time, or it might lift in a matter of days or weeks.  Eventually I will find ways to feel joy again.  I know, because I do it time and again.  I always will.  But, I rest in the knowledge that my strength is being found and held and kept against that which would seek to define me against my will.  I am still me, even when me is a pile of grief and loss.  And I will keep on being such, no matter who opposes me.

And it is a triumph.

Blank Space

/ christyterese / Leave a comment

 

I spend a lot of my life looking at blank space these days.  The empty bed where my dad slept the last few days when he visited.  The gap left in my rear molar when the rest of it decided to suddenly crunch its way out of my face.  The empty lot where a neighborhood house was recently demolished.  A whole lot of other space that just seems to need filling.

But the space that frustrates me most is the blank whiteness of my screen/page when I write two or three paragraphs and then cannot write more.

I’m not sure why this space is so oppressing and so frustrating, but it is so. Perhaps it is because the page mimics my life.  I’m not sure what comes next, and I look out into this blankness, unable to discern a clear path to the next line, or paragraph, or page, or chapter in my book (both literally and proverbially).  I’m faced with the blank space where once there was a whole list of opportunities not to be missed.

When my dad was visiting last week he talked about how it didn’t make sense for people to wait for “someday” to do the things they dream of, and he keeps encouraging people to have their adventures and follow those dreams now.  This idea wraps around him now, adding regret to his grief.  I know that my parents kept putting away money for someday, and someday didn’t come. Sickness and death came instead.  Returning to the Netherlands, vacationing in warm places, going to the grandkids’ music programs and graduations and possibly even weddings—all these are lost to my mother, and many of them don’t carry the same joy they once did for my father, since they dreamed such dreams together and now if he does adventure, he does so without her at his side.  I trust he will adventure, but it will always be bittersweet.

As Dad was saying all of this about not waiting and seizing the moment, I realized that many of my saved-for-someday moments were already unreachable.  They have already escaped my grasp.

Chronic illness and chronic pain steal so many moments.

I already know I may never be able to afford a house, a trip outside the U.S. (much less leaving the continent), or the travel and adventure I imagined in my youth.  And I also look at the possibility of finding a partner and the possibility of fulfilling work with doubt and concern, where once I wore the rose-colored glass of a healthy woman—sure that all the good things would come in time and I would one day have my dreams come true.

Now I just look forward and see that blank white space.  I don’t dare dream for things that will always be out of reach.  I don’t know what I might be able to accomplish in this day, much less in the rest of my lifetime.  And I don’t see the possibility as much as I see the pain.  The pain is hard to deny.  The loss is difficult to deny also, but the pain…it fills every moment.  Blank space and pain.

In recent weeks I have tried very hard to find the positives in my life, and to seek out ways to add positives.  I joined a gym with a pool.  I worked on my writing course a bit.  I deleted negative voices filled with doubt, judgment, and general toxicity from my sphere (aka, my Facebook page).  I colored mandalas.  I started a new art project.  I rearranged some things in my home to create a small “sanctuary” space where I can meditate and do yoga or stretching with ease.  I did all the good things.

And yesterday, after writing and swimming and leaving my house and getting some sun and having a massage and creating and doing all the good, I couldn’t move.  Don’t misunderstand and think that I did all the good in one great motion, and that I overexerted myself into pain.  That is not the case.  Instead, I did all the things that are good for me, in moderation and over some length of time.  I did all the things that should, according to the experts, be helpful and good.  And I ended up in tears and debating a trip to the emergency department in the night.

And then, in a painkiller plus muscle relaxer plus anti-inflammatory plus alcohol state of acceptance (which allowed me to stop considering the emergency room), I realized that I was being foolish in the sense that I was seeking to win a fight with my illness.  It isn’t uncommon for people to call themselves “warriors” or “fighters” in the sense that they fight their symptoms and their illness.  I think it makes us feel better to believe that we can win.  But my chronic illness can’t be beaten to death without beating me to death, I suppose.  And that doesn’t seem like a good end to my story.

I think that my story should end with good and gratitude and love and joy and peace.  That is what I want to fill that blank space.  I don’t want to fill it with tales of fighting and losing and fighting and losing and fighting and losing and then dying.  I want to fill it with laughter and hugs and a full heart and mind and spirit.  And deep down, I know that means accepting pain and living with it, not fighting against it.  The warrior mentality isn’t one that I can easily rid myself of….Wonder Woman covers my desk and my walls and my coffee mugs.  And some of that warrior is still needed to accomplish life—to get out of bed and to stretch and to swim and to eat greens and to figure out a way to lower the cable bill while still accessing the next season of Game of Thrones on HBO, even when those things feel impossible. But, some of that warring needs to cease.  Fighting to write more or write faster, fighting to open that roasted red pepper jar that my hand isn’t strong enough to twist loose, fighting to hold onto any “American Dream” that still assaults me every time I see a realty advertisement, fighting to find love instead of letting it alight upon my life with beauty and grace—these wars need to end.

The thing about that blank space that we all need to recognize and embrace, is that it is blank.  It isn’t filled with our fears and doubts or our dreams and successes until we put them there.  Too often I let other people write my narrative, or I accept the narrative I think “should” be mine according to the socialization and assimilation that surrounds me.  What would happen if I embraced that white space on today’s page, and I accepted that whatever is written is mine to write?  At the end of the day, I write my own narrative.  My story is mine.  And I don’t need to be the warrior who overcomes her pain to run that marathon she wanted to run 20 years ago.  I can be the lover and the peacemaker and the best-selling author and the philosopher just as easily, and with just as much success and greatness.  Fighting has sort of been glorified for us, in American society (and others), as though the story need be one of overcoming the obstacles and working against all odds in order to be good and inspiring, but I am beginning to see my story more as one of accepting that the mountain in front of us needn’t always be there to be climbed.  It can be there to look at and enjoy, and then we can hop in the car and drive around that mountain.  We don’t need to kill ourselves trying to do what society calls success.  We can rename success.  We can begin to accept or deny challenges, based on what we want to accomplish and love and seek to add to our story.

I won’t be running any marathon.  I will hopefully continue to swim until 10 laps doesn’t hurt me anymore, but I won’t fight to get in all 10 every time I swim.  I can accept 4 laps for today.  And I can accept 4 laps forever and call that success if I recognize at some point that my body will never make 10.  Goals can change.  I don’t need to fight for something that hurts me.  I can just change my expectations and accept my limitations.  I may still buy a house someday.  I may still marry a lovely person and share life with him or her.  I might not.  But that won’t mean that my story is one of failure, because I am beginning to recognize that I write the ending, and if I believe that love and joy are the end goal, then there are a million roads I can take and still be the heroine of my story.  The blank space doesn’t need to frighten and frustrate and oppress, because it doesn’t need to be filled with fighting a losing battle.

I’m going to fill my space with wins.  I’m going to fill my space with choosing acceptance.  I’m going to fill my space with the knowledge that my disease affects me, but doesn’t own me.  I’m going to fill my space with loving others.  I’m going to fill my space with loving myself.  I’m going to fill myself with reorganizing the way I think of success and failure.  I’m going to fill my space with things I enjoy, whenever possible.  I’m going to fill it with beauty and grace and love and peace as often as I can.  I’m going to write my story as an adventure story with a happy ending, no matter that much of society would consider a woman who spends her days in pain and doesn’t overcome that pain a crappy story.  It isn’t theirs to write.  It is mine.

Don’t fear the blank space.  Embrace it.  Fill it and mold it and shape it and create it any way you choose.  It is yours.  And whatever your story may become, I know that I would love to hear it, and to share mine with you.  (I guess this post already begins to share mine with you.)  Let’s write our own narratives and share them with one another and with the world.  Let’s create a space where, no matter the circumstances of your life, your story is validated and appreciated.  Wouldn’t that be the most beautiful of endings?  Wouldn’t that be the best possible use of blank space?