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.