Overdrive

It is weird to want to do all the physically demanding things.  I can’t sit still.  I can’t write an article or finish edits on a piece, because I just need to be up and doing things.

My body will regret this so hard in a few days when the steroids are gone and the drive to do all the things leaves my brain.  But right now, I am getting all the shit done.  All of it.  I’ve cleaned more in the past two days than I have done in the last two years, I think.  I’m out of control.

My brain is in overdrive and I need to keep moving and keep doing.

I know that pain, swelling, and all sorts of suffering will be the result of all this productivity.  But I am taking full advantage of the moment.  I’m letting the steroids fling me into overdrive and get all the shit done.  Because I almost never get the chance at feeling like I have energy, and I always struggle to push through the tasks that need completing.

So, I am flying through the week, chewing on my lower lip, feeling all the drive and letting it force me into action.

My dad said, “But you need to rest.”

I replied, “I’ll rest at Amie’s.”

But that isn’t true.  I’ll crash before that. I won’t keep flying until Christmas.  I’ll crash as soon as the pills are out of my system and my “normal” state of being returns.  And my normal is fatigue and a struggle to accomplish even the simplest of tasks.

For a few days, I get to remember what it was like to have the energy of a regular human being.  And I could be mourning the loss of that feeling.  But, I think that just riding this wave and enjoying the thrill of completing tasks is a better approach.  I’ll break down soon enough, and then I can mourn the loss for a bit.

Today, I am embracing the overdrive.

Wide Awake

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

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

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

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

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

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

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

Morning is another story.

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

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

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

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

Let me elaborate.

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

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

Here is why:

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

I’m wide awake.

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

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

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

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

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

I’m wide awake.

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

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

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

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

I am wide awake.

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

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

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

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

But there was also light.

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

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

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

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

I’m wide awake.

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

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

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

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

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

There’s more to me than people know.

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

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

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

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.

 

Plans

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

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

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

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

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

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

I think that would be a sad position to hold.

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

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

I am planning a wonderful future!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

With every little box marked “LIVE”.

Documented

Documents and documenting are serious themes in the past few weeks to months.  It is interesting to me the ways that we are forced or encouraged or inspired to document, and all the different reasons that are used to justify or explain that documentation.

I recently had to make a trip to my local office of the Chicago Housing Authority.  I had used their new online participant portal to upload requests for a rent renegotiation due to household income changes in both August and February.  In August, they denied my claim, saying I had not attached documents proving my claim—but I literally uploaded them per the instruction of the site, and had copies and receipts of all the attached information.  Last week, they claimed that I had never made a request in February, and that my mailed documents of proof (which I had mailed to avoid the same result I was met with in August) went to the wrong address (the address listed on their form and web page, by the way).  So, they claimed there was no proof that I ever applied for a renegotiation.

Not true.  I had documents and receipts a plenty this time.  There was no way I was letting the lack of documents be my downfall this time around.

So, I went into that office with an entire folder full of documents.  I brought documents proving I applied with proper documentation in August and was denied.  I brought documents proving I applied again in February, and supporting documentation that I deserved the rent adjustment at that time as well.  And, for good measure, I brought in documents removing my daughter from my household over a week before she moves into her own apartment.  All of those documents were copied and admitted and dealt with by the office manager at the office, and then she said, “Now, the only thing we are missing is two documents signed by your daughter and we can get all of this processed.”

Gaaaahhhhh!!!!

I called my daughter and asked if she would head down to the office after work to sign these added documents.  They closed at 5, and she made it there at 4:45, signed the documents, and in the next 30 days, my mailbox will receive documents that tell me whether or not I am allowed the revision in rent, whether or not they will back-date to the dates of application, whether or not I will receive a refund of the monies I overpaid due to these errors on the part of the housing authority, and a document that tells me to come into the office again and sign about 45 other documents so that they can give me documents to take to my landlord, so that he can accept my voucher sans dependent child document and let me keep living in the same home I am currently living in.

If you thought being poor was tied to laziness, you are an idiot.  I fill out as much paperwork as any doctor or lawyer I know.  I just don’t get paid for filling it out—unless you count rental assistance and food stamps as getting paid, which I don’t, because safe housing and food security are basic human rights. (A fact that most developed countries have embraced and created systems of care to ensure. But not the United States, because we are selfish, entitled brats who believe we somehow earned our privileges—in other words, ignorant assholes.)

And if you thought you heard the word “documentation” enough for a lifetime in my earlier paragraphs, then prepare to be disappointed!

There are all sorts of other forms of documentation that are tied to my disability case.  The disability system is such that you are denied the first time.  Almost everyone not in a wheelchair, nursing facility, or mental ward is denied.  That is just the way it works (inefficiently and expensively).  You acquire documents from all of your doctors, you fill out numerous assessments, you add in assessments filled out by those who know you or live with you, and then you wait for documents that say you are denied.  After the denial documents, you go find a lawyer, and they make you sign about 87 documents because you must sign disclosure statements for every lawyer who might work on your case, not just the law firm, according to the state, effectively requiring the disabled person to sign the same document 4, 5, or 6 times, depending on the number of lawyers in their particular firm.  Then you wait for the exact same assessments to arrive and be filled out another time, and collect the same medical records, but your lawyer asks you to keep them informed of any changes in treatment or diagnosis and to document your wellness or lack thereof, so you give all the paperwork you did last time, plus you begin logging your daily mood, daily function, daily tasks, and any and all changes that happen, to support your case when your redetermination is denied, and then you have to file paperwork requesting a hearing, and get back a document that says you will be given a court date in about 10 to 12 months.  Then you document changes and function and symptoms and such for a year, while you wait to bring all the information amassed in the past three years before a judge.  Who, if we have done all the things correctly, will create a legal document stating that I am, in fact, disabled.

It isn’t difficult to understand, at this point in the post, why I hate documents.  I am so overwhelmed with paper that I sometimes feel it is drowning me, and paper cuts are just par for the course in my situation.  If I don’t have any, I worry that I must have missed some paperwork that needs filling out or filing.

But yesterday I was introduced to a new form of documentation.

Yesterday, two friends came over to help me create a video for my fundraising page.  And we started by documenting things.  One suggested things that we could document, and the other started slowly, but surely, taking video and still footage of all the things.  We started with adaptive tools—the things I need on the daily to live life: special knives and peelers and openers for the kitchen, a tool to tie buttons and pull zippers, various adaptive pens and pencils and cutters (because I can’t use scissors without severe pain and injury), and more.  Then we moved on to the overflowing basket of medications and the daily pill organizers that are filled with multiple doses of many of those medications.  We also printed a copy of my next two weeks of appointments, which required three pages of paper.  And we looked up the list of current illnesses, which wasn’t complete since not all of the things are recorded in the same place, but still took almost an entire page.  Next was physical therapy and occupational therapy papers that show what exercises I am to be doing daily.  We spread them out over the floor, and as I was preparing them I dropped papers that scattered all across the living room.  My friends filmed as I sat and worked to collect and organize this pile of documents once more, and caught on camera the fact that I cannot see some of my therapists due to insurance refusals, documenting that my medical needs are sometimes not met because of money.  And by that time we were all exhausted and decided that we would need another meeting to document all of the ways that my illnesses affect my life—maybe two.

But this documentation, this mini-documentary of my daily life, being made by the son of two documentarians and his fiancé, was eye-opening and expressive of things that I hadn’t imagined.  My life is really difficult.  And there are all sorts of proofs of it.

However, the thing that was most shocking to me was that I am doing all these things.  I am doing my exercises and using my splints and walking in water to get some cardio and eating 1100 calories and none of them sugar and filing all the papers and bringing in all the documents and taking all the medicines and attending four and five medical appointments each week and stretching and meditating and coloring mandalas and doing art therapy and studying nutrition and gardening and using my paraffin bath and doing yoga and writing and more. I am doing far more than anyone might imagine, because I am doing far more than I could have imagined.

When I look at all the things that make up my life, and I am drowning in the sea of papers, and exhausted or craving chocolate or in pain, and feel insignificant and incapable, I rarely look at the proofs of all that I am doing.  I look at all the documents that show I am not “good enough”–poor and sick and lacking.  I don’t look at the documentation that shows me doing every possible thing I can do to be the most well I can be.  I get dragged down by the negative proofs and don’t even consider that there are positive proofs.

While some might not understand the life of the chronically ill person, and will refuse to believe the proofs laid out in my mini-documentary, I know that I am doing so much hard work to live my best possible life.  Whether that means I walked the dog, or I ate vegetables, or I colored for a bit, or I remembered to connect with my breath, relax my face and neck, and engage my core when feeling fearful or overwhelmed on a stressful transit ride, or I washed the dishes, or I asked for help, or I practiced new body mechanics, or I managed to finish an article or blog post, I am doing everything that I can do to live well.

My previous ideas of living well were not good ideas of living well, in many ways.  And when my focus shifted from living out my pain in ways that brought more pain to creating a life that included education and progress and sufficiency and stability, I thought that meant I was on the path to living well.  And I believed that documents like my resume and my degrees and my personal and professional references were the ones that would bring me other good documents, like the deed to a house and paystubs that showed more than three digits before that decimal point and an insurance card that I could bring to the orthodontist to receive services.

But I had it wrong.  None of those documents are proof of living well.  I know plenty of people with bigger incomes and better insurance coverage who are not living well, but are full of contempt and hatred and negativity.  I know plenty of people with lots of letters behind their name from years of education who are completely ignorant on important points.  I know plenty of people who are physically and financially well, but complain every time I see them about one thing or another in their life, refusing to see anything that has good or peace or acceptance or joy at its core and only seeing the negative.  None of those people are living well.

Documenting my life started as a project to garner support from others, by offering proofs of my need.  And, I suppose, that is still one of the goals of the project.  But, it has become much more than that for me.  It has become a proof of the fullness of my life, and the extent of my dedication and strength, as I work day after day after day to live a life of wellness—improving my body and healing my mind in any way possible.  This video will be something that shows others what dealing with constant physical and mental suffering is about, and give them a glimpse of why my financial need is great at this time, and demonstrating why I am incapable of working enough to support myself and depend upon the generosity of others.  But, for me, this video is the catalyst I needed to find self-compassion and to stop denying my tenacious work toward a life well-lived, but accept and proclaim and honor the fact that I am a warrior.

I am not weak, but stronger than almost anyone I know.  I am not lazy, but offer my body the rest it needs to heal and cope and survive.  I am not stupid, but suffer cognitive impairments due to my illness.  I am not reclusive, but work to foster and put energy toward only the best of relationships with the best and most supportive people in my life.  I am not crazy, but deal with multiple mental illnesses that affect my thinking and choices.  I am not playing the victim, but am coping with the ways that I was truly and deeply victimized by all manner of perpetrators.  I am not scared, but am learning to manage hypervigilance and overstimulation and anxiety caused by my diseases.  I am not giving up, but am fighting for every moment of every day to create the best possible life I can live with my challenges.  I am not begging, but I am placing my need before my community in the hope and the trust that provision will be offered in return.  I am not desperate, but I am allowing myself to be vulnerable and open and honest in expressing my struggles.  I am not whining, but I am telling the truth about the realities of chronic illness—and if you think that telling my truth is whining, note every time you complain about a thing, and see which of us expresses more complaint per actual struggle (I’ll bet on you, unless you are dying or also have chronic illness).  I am not lying, exaggerating, or making things up, but I am telling the harshest of realities without any sugar-coating to make it more palatable or acceptable to others.

And I know that it isn’t very palatable or acceptable to discuss any sort of true suffering in our society.  I know that we generally avoid pain, and we lie about who we are and how we are doing on a very regular basis, and we chastise or castigate or cast out any who express in their words or actions or being any hint of the lies we are telling or the avoidance we are seeking.  It is the reason we don’t make eye contact with the pan-handling person on the corner, or look down on the addict or the sex worker, or pretend that we “earned” our privileges and not that we are taking part in a system of injustice that is harming others and refusing helps for those in need.

I wonder, though, if it is possible to truly live well when we can’t look in the eyes of the homeless, or see the addict and the sex worker as our equal, and admit that we have privileges and seek to create a more just system that offers basic human rights to all people.  And I move toward an answer of “no”.  The more I identify with the least and the lowest of the society, and the more I hear people’s judgment and lies and excuses to reject my illness or my need or my deserving assistance, the more I believe that I am living well, and those others are living sad and sorry lives.

I know that I am living well.  I am putting every ounce of energy into being stronger, more able, less dependent, more mobile, calmer, more balanced, thinner, more educated, more aware, and just better than I was yesterday, and I am doing it in a way that doesn’t deny my experience, but embraces the reality with which I am faced and by which I am surrounded.  I am doing it without shame and with honesty and vulnerability.  And I am doing it in ways that recognize my privilege and stand against systemic injustices.  I am living well, and am proud to be doing so.

So, I am no longer afraid of or weighed down by documentation.  I’m learning to embrace the documents in my experience as proofs of transformation and hard work and betterment.  I’m learning to see every piece of paper as a document that shares life and fights disease and seeks equity and justice, even when those papers are also annoyingly redundant and seem ridiculous.  And I am also recognizing that every word I write here, and every thank you note sent, and every photo with friends and family and my dog, and every selfie of a new haircut, and every update or post or page that is put out by me or on my behalf or with me tagged is also documentation, and it is documenting a most beautiful life.

Bring on the paperwork, world.

Paper cuts or no, I am ready to keep on documenting and to keep on being the best and the most I am able to be.  And no matter how many diagnoses come my way, and no matter how many treatments and therapies are added to my daily routine, I am going to keep on adding documents that show a life of wellness—maybe not in my body, and maybe not in my psychology, but definitely in my spirit.

I will live life well and share a record that screams of legacy and not of lack.

Diet

I think that this title is somewhat of a “dirty” word.  Most of us think of it in terms of restrictions and frustrations and defeats.  I know that is how I often view dieting.

This is also a somewhat new concern for me.  I am one of those people who was born fit and stayed fit for most of my life.  I ate all the carbs and all the candy and still kept my 120 pound perfect figure.  When you look at pictures of me in my youth, I am bronzed and buff and looking like a tiny body builder.  And then, in my teens, I had that great T and A with a tiny waist that was apparently super desirable.  And that figure stayed well into my 20’s, though a couple of pounds more T and A were added.

But then, I got sick.

I didn’t even know that I was sick.  I just knew that I was tired, and I was gaining weight.  I decided to take up running.  I would make it about a half mile and then be in pain and walk back.  Then it would be four to six days before I could summon the energy to run again, with similar results.  I started spending more and more time on the sofa and less and less out trying to run.  And I kept gaining, slow but sure.  140.  145.  And then I had three or four rounds of steroids.  160.  Trying to run again.  158.  162.  And then the dreaded diagnosis happened.  The reason I had been so tired all those years, and complaining of fatigue came to light—fibromyalgia.  I started on Neurontin and kept on gaining.  I went through a really bad year, where almost all of my time was spent sleeping or lying on the sofa depressed and in pain, and I gained even more.  170. 180. 198.  And then the horrible moment when I hit that mark I was struggling against: 200.

I’m currently 208.  And my BMI is 35, which puts me in the category of the “obese”.

And I found the bright side in that by saying, “at least I am not morbidly obese!”  But inside something was cracking and a fissure that could swallow my obese butt was opening.

For the past several years we have been trying all sorts of things to keep my weight from climbing.  Switching up medications, sending me to physical therapy regularly, getting me into the pool to swim, increasing my calories, then decreasing them after new studies showed my low calorie diet actually made sense given the way that fibro bodies metabolize in comparison with “normal” bodies.  And nothing has been helping.  And it is ridiculously difficult to cope with this, after a life of great bodiness.

I know that I shouldn’t be saying some of these things in this manner.  I know that there are men and women who have struggled for an entire lifetime to manage their weight—kids who were “husky” from childhood and who were constantly challenged by body image and weight control.  And I don’t mean to deny their experience or trivialize that struggle.  But I didn’t know that early struggle, so becoming acclimated to a big body has been really difficult for me.

I used to be able to put my foot behind my head, or do the splits, and now I can’t touch my toes without a blob of belly fat getting in the way.  It is quite the transition, and not in a “good” way, according to most.

But in some ways I have learned good lessons from this experience.  I have learned that I only judge myself by societal standards of beauty and size, and not my friends.  I have learned that I don’t accept or love myself well at any size.  I have learned that bodies aren’t all made to appear the same, but we are very diverse.  I have learned that health and size are not necessarily linked in the ways society teaches us they are.  I have learned that bodies are still amazing, complex, beautiful, and fantastic at any and every size.  And I have learned that all of the things that I was taught about “calories in/calories out” can be thrown out the fucking window, because it just isn’t always true.

One lesson that I haven’t quite learned is to love my own body in this state, and not to shame myself for being larger than I once was, or being larger than society and the media and whatever other influences dictate as appropriate or beautiful or “healthy”.   I’m working on that.  I have this fabulous yoga sequence I do from yogaglo where I get naked and jiggle my parts and offer love and thanks to all the parts of myself that I struggle to accept.  I have a list of things I love and am grateful for about my body.  I work on dissecting my illness from my personhood, and instead of saying things like “I’m so dumb today” I correct and say “my fibromyalgia and PTSD are really affecting my cognition today”.   And I am far from perfecting these strategies and loving my jiggling parts wholeheartedly, but I am on the road to accepting who I am as I am.

And I think that is the space we all need to start from before we seek to make any changes, ever.

I spend a lot of time using mindfulness exercises to stay in the present moment, and to accept that moment as it is.  This is a coping strategy that is basically saving my life.  Chronic pain and chronic mental illness are really difficult to manage, and learning to accept the present moment, and to sit in it without reacting to it in any way helps.  Separating pain from suffering, letting go of thoughts, noticing my environment, and being more aware have all helped me in myriad ways.

And this way of being aware and of accepting are transformative.  So, when I think about transforming my body, I can’t begin without finding an awareness and acceptance of my body now.

Getting naked and letting all the parts wiggle and flop and whatever else they may do is part of that, but so is looking at the ways that food and I interact, and noticing the ways that I am influenced by outside media and standards, and looking honestly at how healthy or unhealthy parts of me are, and being able to recognize and embrace all of the amazing things my body can and does do.  I mean, have you ever stopped for a moment and considered the process that happened in order for you to pee?  It is kind of amazing.

My body has lots of flaws—dissociated parts of the brain, pain where there should not be pain, benign tumors hanging out in a few places, a pelvic floor that can’t figure out when to hold tight and when to release, weak quadriceps, ruptured bursa sacs, a CMC joint that can’t seem to get its shit together, and the list goes on.  But it also has lots of amazing power and strength and goodness and health.  The fat bits are just one part of the whole.  And the whole is actually pretty fabulous.

I am scheduled for a visit with a nutritionist the end of next week.  And I suppose you were not expecting to hear that, after all of this loving the fat bits talk.  But I want to choose my best self, so even though I have tried many ways of eating and exercising in the past, and even though I think that diet should refer to an abundance of good foods, and not refer to restrictive and uncomfortable programs that usually fail us, I want to make certain that I am actually doing what is most healthy for my body, and for my life.

Choosing my best self includes ensuring that I am eating well, and not allergic, and not suffering from some metabolic issue, and being certain that there isn’t a disconnect between what I think is healthy behavior and what science says is healthy behavior.  And that doesn’t mean that I am going to “go on a diet”.  It does mean that I am going to work toward my best body.  If I don’t lose an ounce, but I find that I would be healthier with less sugar and more fat in my diet, I will still be pleased with the experience. Because awareness and acceptance create change.  I don’t fully understand why or how they do, but they do create change.  Being aware of myself and being accepting of my body as it is moves me toward changing myself and my body in positive ways.

People often use a saying that the Buddhist gains nothing from meditation, but then goes on to list all of the negative things that have been removed or lost.  This is what I think needs to be kept close when I think about diet and body image and size and health.  I gain nothing from accepting my body, but I lose the tendency to criticize or compare myself to others, I lose an unhealthy connection with food, I lose the need to prove my beauty or strength to myself or others, I lose the need to force my body into a mold made by unrealistic normative standards, and I lose the habit of speaking negatively about this amazing body that offers me life.  And losing all of that is more important than losing pounds.

My body might always be this size.  The nutritionist might say that all the medications I am taking and all the ways my diseases harm my cells are not things that I can overcome with dietary changes.  The verdict may be that I remain above that 200 mark, that I am always hoping to get below, and that I need to set more realistic goals for my body and my life.  Or, conversely, I might learn that I have terrible habits that are contributing to the ever-increasing waistline, and be taught ways to eliminate or manage such habits to reduce my weight.

Either way, I intend to remain committed to the jiggling of the naked parts and the offering love to my body.  No matter my size, I still know that awareness and acceptance are the tools that bring me the most good, and the least struggle, in every part of my life.  Skinny or fat, frail or fit, tall or short, dark or light, broad or petite, stout or lanky … none of that matters more than the awareness and acceptance of the self.  And, really, none of that matters at all.   I won’t love you any less because you are short and wide than I would were you tall and thin.  And anyone who would offer love and compassion and kindness only to the thin or the tall or the light or the petite or the whatever is just an asshole.  Because the point of this post may be that we are all human.  And all humans are equal.  And all humans deserve to be treated with respect and kindness and compassion and love.  Just because.

So, I encourage each of you to go get naked (probably in private, given the laws against public nudity in some areas) and shake out all those parts, and offer them love, and thank them for being, and start being aware and accepting of your body and self.  Bask in the glow of the beauty of being.  Revel in humanity. Love existing in space and time.  Love your body. Love yourself.

Production

Yesterday I deleted some people from my friends list on Facebook.  This isn’t uncommon, as far as my activities in a normal week might go.  It is uncommon that I have such a visceral reaction to the things people say that get them removed from the list.

These people clearly hit a nerve.  So, I dug into that nerve.  And my digging brought about the realization that they were saying things that I say to myself, and that is why it was so hurtful.  I haven’t talked to these people in years.  They know nothing of my situation, and never bothered to ask about it, but felt incredibly free to judge it, nonetheless.  And they judged not just the situation, but me within the situation.  They were making attacks—entirely unfounded attacks—on my character, and calling me a person who lies and steals.

Why, you might wonder, would I call myself a person who lies and steals?  And I have an answer.  Society.

When you are ill and cannot be “productive” in some hyper-capitalistic sense, you are called lazy and worthless on a pretty regular basis.  And if not called it, then at least made to feel it.  North American society oozes production.  We over produce and we over consume and we are basically a big fat nation that hogs all the stuff and money. And when you don’t buy into the system of making too much and having too much you get all sorts of push-back.  Has anybody been called “granola” or “hippie” for letting go of the idea that we need all the things all the time?  Has anybody been chastised and berated for being too slow at making a latte or typing a document or responding to a text message?  Has anybody been given the side-eye because they ordered a side salad for dinner at the steak house?

We are expected to fall in line and over produce and over consume and to always want more and always be more and never fail or slow or stop.

So, when you cannot play that game, and you sit the bench, you feel the disdain of the whole of your society.  It pours over you.  And you start to feel it inside of you.  And it becomes not the mourning and coping that it ought be—the letting go of expectations and settling into your new truth—but a self-hatred that you never deserved.

Bodies and minds are complex and beautiful.  And because they are such, we don’t always know what they are doing or why.  My rheumatologist said today that I was pretty much stuck in the disabled column “unless they come up with a miracle pill”.  And it would be a miracle pill because they don’t even know what causes my illness, much less how to treat it effectively.  Barring an act of god, I stay this way.  I stay broken and in pain and unproductive.  And I hate that.

To hear someone else say to me the things that swim through my mind.  To have relative strangers and former friends voice those things was hurtful because they were my fears realized.  I am lazy.  I am bad.  I am not enough.

None of those things are true.   Not one.  But I feel like they are because of the way our society treats people who don’t produce in the ways that they deem fit.

I do produce.

I write when I am able, and I create works of art when I am able, and I am trying to learn to sew again, and I have a lovely little rosemary plant that I am growing in my front window.  I also encourage and offer love to my friends and my daughter and my dad.  Sometimes I talk with the neighbors, or send coloring pages to friends.  I often spend time meditating and doing a few yoga poses and listening to or reading material that helps me cope with my illnesses.  I listen to music.  I play with my dog.  I bake cookies once in a while.  I compare theories on racism or feminism or Game of Thrones episodes with friends.

And that is more than enough.  That might even be better than the Almighty Dollar or the shoddy product or the other service I might provide.  If I could make a Big Mac, and not sit and braid a rug when I have the dexterity and energy, would you respect me and value me more?  I hope not.

I mean, I’ve been a fast food worker, and spent much of my life working in the service industry, so I am in no way belittling the people who make your Big Mac.  They deserve a thousand times more money and respect than they are currently receiving.  But, what are the parameters for successful production?  And who made them?

I’m choosing to reject them, no matter who made the parameters or what they are.  I am enough as a disabled woman working her hardest to make ends meet and to jump through all the ridiculous hoops the state demands of me in order to get the benefits that are legally and rightfully mine through the Social Security Administration.  And if that isn’t enough for you, then maybe you need to evaluate how you value people, and not evaluate what I do or don’t do with my time.

It isn’t like I break into your house and judge your parenting or cooking skill.  And if you asked me to mail a letter on your behalf, I wouldn’t assume it was acceptable to judge all the areas of your life because you asked for one thing from me.  And why would it be okay for you to put a spotlight on all the areas of my life because I ask you for one thing?  Is it because that thing is money?

If that thing being money makes the difference, then you value money more than you value lives.  If asking for a favor and asking for money are on two completely different planes, in your estimation, then you serve money, and not humanity.  Because if you would pick up some milk for me, but not give me five dollars, you are placing undue value on the dollars.  Of the two, five dollars is probably worth less than the favor, if you factor in the price of gas, the price of milk, and the value of your time.

I’m currently listening to a song that has lyrics that repeat, “Have you ever lost every part of yourself?”  And this resonates with me, because becoming disabled felt like losing every part of myself.  I can’t do what I once did.  My mind isn’t the same.  My body isn’t the same.  My capabilities and skills and gifts and occupations and expectations all came to a grinding halt.  I lost everything I was, in some sense.

Until I realized, and people reminded me, that I didn’t lose all.  I still have my sense of humor and my fabulous snarky sarcasm and my beautiful eyes and that face that always shows what I am thinking (even when I want to conceal what I am thinking) and my love for humanity and my passion for justice and my artistic spirit and my love of music and the power of Wonder Woman as my guiding light.  I am still me, but I produce at a slower rate than I once did.  And this is only problematic if I keep buying into the idea that my value is directly correlated with my rate of production.

No person’s value should ever be directly correlated with their rate of production.  Not ever.

So, these people who are no longer on my friend list did me a favor.  They reminded me of who I am and what I am capable of, instead of keeping me stuck in a place where I was focused on my own lack of production and means of production.  They shook me out of the place where I valued myself only as the hyper-capitalist society valued me, and brought me back to the peace of knowing who I am, and valuing myself as a human, and not as a mode of production.

Would it not be incredibly transformative for each of us to have someone push us into that knowing and that valuing of the self?  What if the people working 65 hours knew that they would be just as cared for and valued if they worked 32 hours?  They would likely all choose the 32.  What if we all believed that our passions were worth living out, instead of things relegated to the spare room or the moments when we finally retire from the 9 to 5 production race?  How many people would be writing a concerto instead of punching a time clock?

What would happen if we all looked at ourselves and one another through a lens that included valuation based on humanity and joy and kindness and love and passion and friendship and interest and curiosity and so on and so forth, instead of one that valued only production, and subsequent dollars?  I would LOVE living in that world—and not just because it would mean I struggled less with seeing my disability as a failure of humanity, but because the whole world would be filled with good and love and joy, not stuff.  I would much rather have the love and the joy and the good than the stuff.

So, I am not deficient.  I am actually less so than those who would judge my inability to produce as a marker of deceit and theft. Because I value humanity above productivity.  I look at people and see people, not burdens or benefits.

How do you see people?  Do you see them at all, or are you too busy trying to prove your own productivity?  Take a breath.  Let it go.  And look deeper.

You are not the sum of your production.

You are a person.

And you are valuable.