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.

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.

Wealth

I won $25 in the form of an Amazon gift code.  I feel rich.

Just kidding.  I am still super poor, but I wanted to make the point here that most people could lose $25 and not be terribly upset by the loss, while for me it feels like frigging Christmas wrapped in the lottery to gain $25.

Wealth is both relative and not relative.  I have far more than someone living in a hut in the jungle in South America, perhaps, monetarily speaking.  But I also have far less than most people living in North America, monetarily speaking.  So that makes it relative in nature.  But there are really easily applied formulas for figuring out what it costs to live in a particular place, and being from North America, and having no income, I rest way down at the very bottom of the poverty scale.  There isn’t anything relative about that.  I can’t be considered wealthy based on the conditions in which I live. And, frankly, I can’t afford to move to a hut in South America either, so I am stuck within those conditions, and my situation would likely not change were I to live elsewhere in the United States. (Canada is a whole other, and I dare say better, story than here. But I don’t think they give you a visa to utilize better social programs.  They probably prefer people emigrate with useful skills, not disability status.)

So, if we understand that I am stuck where I am physically and financially, we can also understand that I don’t have monetary wealth.  And that presents challenges that I often never considered.

There was a commercial on today for ADT security service that said something along the lines of “even in your nice neighborhood”.  And I was taken aback as a person whose neighborhood would rarely, if ever, be considered nice.  Are they specifically marketing to people in “nice” neighborhoods?  What defines nice?  Who thinks that bad things can’t happen in their neighborhood, even if it fits the criteria set forth for one that is nice?  And aren’t there enough neighborhoods that are not meeting the nice criteria for ADT to make plenty of money?  I know my building has an alarm system on every floor, even though there are no less than four deadbolts between the street and my apartment from any entrance. And it began to sink in that what nice means is a neighborhood with wealth.

Wealth, with regard to neighborhood safety, is also relative and not relative.  There are far more shootings in the south side and west side neighborhoods of Chicago than in other areas, and these neighborhoods are also those that have the most poor households. (We will ignore for the moment that they also have the most people of color—or, rather, are composed almost solely of people of color.) It would seem that money equates with safety.  But when we look closer, and assess types of crime, there are far fewer home invasions in my area on the west side than in wealthier areas.  Nobody wants my not techie, super-old, very cheap electronics, or my Salvation Army furniture.  I’m relatively safe, in that regard.  I’m also relatively safe because my block is filled with families who own their homes and take pride in being good, Christian people, so they either don’t participate in criminal activity, or do so quietly and without drama and violence.  (The neighbor lady sits out back and smokes weed every nice evening, for instance, but she isn’t dealing in heroin and guns.)  So, being impoverished doesn’t necessarily mean you are unsafe, in a relative sense.  But, there is also the issue of extreme poverty—the kind that leads to homelessness, prostitution, hunger, and the like.  This poverty makes you very unsafe.  Have you ever wondered why many homeless sleep in public parks during the day?  It is because sleeping alone in the dark corners of the city is very dangerous, especially for women or children.  The elements are dangerous.  The alternate economies, like selling drugs or your body, are dangerous.  There is no safety in extreme poverty.  This is not relative.  It is simply the truth.

And lately I sit on the precipice of this extreme sort of poverty.

I’ve learned to live in the burden of the relative poverty and the relative safety without too much difficulty.  There were a few years between an innocent youth and aware adult that included sex and drugs and homelessness, and that I do not regret, because it taught me the truth.  It made me know, beyond any uncertainty, that extreme poverty should never be, because you cannot be in it without being in constant danger.  I was in constant danger during those years.  Those years broke me, and started the process of rebuilding me anew.

What I lived then, I never wanted another human being to experience.  I never wanted another human being to choose sex with a stranger over possibly freezing to death in the car.  I never wanted another human being to steal tampons or soap from Walmart, because there wasn’t another way to get them.  I never wanted another human being to learn the schedule upon which the McDonald’s dumpster received uneaten burgers from the previous shift, still slightly warm and wrapped in their lovely papers inside that plastic garbage bag, and ready for consumption.  I never wanted another human being to sleep with an aerosol hairspray and a lighter at the ready, to create an instant blow torch to the face of any who might attack in the night.  Nobody should ever live that way.

I moved from the extreme poverty to the relative poverty category when I had a child.  Then you got all the wealth–$361 of wealth every month!  It was like a heaven.  A heaven where you had to decide between socks and diapers, or medicine and transportation, or tampons and toilet paper.  A heaven where I would unroll all the toilet paper from the church bathroom stall into my purse every Sunday.  A heaven where my daughter missed the 1st grade class trip because I couldn’t come up with $6.  A heaven where I cried myself to sleep at midnight and then got up at five in the morning to do my own homework before I had to wake my daughter for school.

That heaven, sadly, is gone.  I’m no longer eligible for more student loans, and I haven’t qualified for TANF since my daughter was five, and while I do get food stamps and a housing voucher, I don’t get any other assistance.  My light bill and my gas bill and my phone bill and my medications not covered by insurance and my clothes and my toilet paper and a haircut and soap and laundry detergent and whatever else I need, that comes from nowhere.  I’ve maxed out my credit cards and borrowed all that I was able from family, and now there is nothing.  Now it is over.  Now I stare at that space between here and sleeping with aerosol and lighters, and I see it narrowing, and I am afraid.  Can I survive on the street now?  No.  I wouldn’t make it a week out in the elements.  Would it come to that?  I don’t know.

What I do know is that nobody on this planet, and certainly nobody in the United States, should see $25 as wealth when others wouldn’t notice if it went missing.

When I was younger, I had these friends who would take checks out of their mom’s checkbook and forge her signature and go out to eat and such.  They would take my relative poverty butt along for the ride.  I don’t think their mom ever noticed that they were essentially stealing her money, or she, at least, didn’t care and simply allowed them to continue the practice.  Either way, it was a huge departure from the way I lived.  I could not imagine a world where every penny was accounted for in the budget weeks before any income was expected.  I could not imagine a world where money could just leave your bank account without you freaking the fuck out and tracking down the evil person who took it.  I could not imagine wealth.

I still can’t.

I have friends who I would consider wealthy, and relatives that I would consider wealthy, so I see wealth and have been close to wealth, but my own mind doesn’t know wealth.  It only knows scarcity.  And when you only know scarcity, it is extremely difficult to comprehend or imagine wealth.

I do strange things out of scarcity and the fear of scarcity.  I save bottles of product that are clearly empty, just in case I can somehow get more out, by pressing on the pump a thousand times, or turning it upside down and banging it on a hard surface, or by adding some water to dilute the product and potentially get at least partial benefit from the watery substance that is left.  I keep clothes with holes and things that don’t fit, just in case there is never a way to replace what is in my closet with something else.  I imagine everything needs to be saved and kept, albeit neatly, in the closet.  I accept things from others that I would never choose for myself.  I always take home leftovers, even if I didn’t like the food the first time and know I won’t eat them.  It just seems like I always need to be prepared for a period where I am destitute.  That day seems moments away.  Always.

The stress on my body and mind from believing in this destitute day and my needed readiness must be outrageous.  It is no wonder that people in poverty have shorter life spans.  Stress alone is killing us, never mind exposure or illness or starvation or infection or assault.

I should feel wealth, and not scarcity.  We all should feel wealth and not scarcity.

The other day on the bus I recognized a voice.  It was a man I had spent some time talking with on the bus a year or so ago.  I remembered this interaction vividly, because he was a pianist and a piano teacher, and also homeless.  My mother was a piano teacher and a pianist, so we connected on that topic and he began telling me all sorts of stories about his days as a professional musician.  He traveled to places exotic and new and he performed in all sorts of famous or glamorous or beautiful venues, but people gawked and made scowling faces as I spoke with him about his wealth of experience, because it was obvious that he now had no monetary wealth to speak of.  I heard him telling a woman next to him that he was a piano teacher, and immediately was taken back to the memory of him and our lovely conversation.  I looked over, and I hardly recognized him.  He had the same glasses and the same torn pants, he still had a jacket too light for the weather and curly blonde/gray hair sticking out in all directions, but he had lost maybe 70 pounds and he looked gaunt and ashen about the face, instead of plump and rosy as he had been the day I first met him.  Tears formed in the corners of my eyes and I looked away, putting on my headphones and immersing myself in something other than the empty feeling in my gut.  He had slipped down the slope into extreme poverty.  He is dying.  Slowly, but with certainty, he is dying.  And he reminded me once more of my mother, and the frailty she showed as her body slipped into death.  All the wealth this man possessed was leaving him.  But it should not have been.  That history, that life, that wealth of experience should have been valued and respected and honored.  It wasn’t, because he was poor and homeless.

I deserve to feel my own wealth, for once.  I should be allowed to feel the wealth of knowledge and intellect I possess, and the giftedness of an artist and a writer and a poet, and the depth and the breadth of a life lived with fire and passion and play and purpose.  I rarely feel that wealth.  I never feel that wealth without doing so deliberately.  Because the poverty pushes out all else.  The monetary scarcity—the lack of financial resources—overwhelms any other wealth that we might possess, and leaves us bathed in insecurities and unable to promote our strength.  It strips us of the goodness and leaves us only the worries of never having—never being—enough.

So, today I won $25.  And all of this came out of that little Amazon gift card.  All of this was the result of that one moment, when I declared that I am rich, even when I know that I am clinging to relative poverty with every cell in my body right now.  Even though I know it is a lie.  Even though I believe in scarcity, when I wish beyond all telling that I could trust in abundance.  I don’t.  I don’t know abundance anymore.  Maybe I never did.  And maybe I will go the way of my pianist friend, slowly losing life to homelessness and hunger once more, or maybe I will go the way of others, and win the lottery or write a best-seller or start a business and have millions to spend.  But, somehow, I think that I might always be stuck in this pattern of thinking, no matter which way I go.  Because being poor has become a part of me, and fighting to survive is the only fight I know, and scarcity has been my reality for so long that I don’t know that I could ever believe that it won’t be stripped from me, and that my true, scarce self will be exposed for all to see.

I find that really sad and terrible.  And I do not have a beautiful expression with which to leave you, and a happy ending to this post.  Because this is me thinking aloud and finding the truth in my own post, not me solving the problem to make you feel better.  And, maybe you are a person who would benefit from sitting in this space with me, and acknowledging that the solution isn’t evident.  Maybe sitting in my scarcity will help you see your own abundance, or maybe sitting in my scarcity will give you comfort that you are not the only one, or maybe sitting in my scarcity will inspire you to become passionate about sharing abundance and honoring wealth not monetary in nature.  I don’t know.

All I can say for certain right now is that I am really excited to spend my $25.  Now, should I buy socks or medicine?

Edits

It is a weird process that I am embarking upon this winter.  I have decided to purge.

I am cleaning out closets, slowly but surely, and getting rid of things that are not used or that don’t fit.  I’m looking through my home and my life and my psyche and trying to let go of whatever doesn’t spark joy.  Frankly, if I don’t love it, it needs to go.

And the hardest part of this process is not letting go of those fabulous quilted boots I have been wearing and wearing out for the past three years, but letting go of my expectations for my life.

You see, the closets aren’t the only project.  I have been cleaning my office in little increments for the past month or so, and much of that work has been centered around clearing out boxes of files.  Once upon a time, we used paper to hand in assignments and take notes.  And that time left me with stack upon stack upon stack of paper.

It is more of an annoying task than a strenuous one.  I just need to pick up the file and flip through the pages and determine whether to keep or toss the papers within.  And the criteria of “love it, use it, or lose it” should help me to easily make such determinations.  I obviously haven’t used this paper in years, and I likely won’t use any of it again.

But I love this paper.

I shudder a bit at even making that statement, but it is an expression that I cannot get around.  I don’t love the actual pieces of paper, of course.  I love some of the ideas on the pages.  But that isn’t why I have kept them.  I have kept them because I thought I would use them in my future.  I believed that these articles and notes on theology and philosophy and psychology would be useful when I became a professor, or a writer of groundbreaking new concepts, or a preacher.  And today I am dealing with the fact that my belief was wrong.  I am not and will not be those things.  Those things take energy and capability and cognition that I do not have.  And sans miracle drugs, I never will.

I am not just throwing away notes and articles.  I am throwing away the goal that ten years of education was meant to bring me toward.  I am throwing away the ideas of my future self that have carried me through the last twenty years.  I am throwing away expectations and dreams and hopes and promises made to myself.  I am throwing away a life.

And I know that I have the opportunity to fashion a new life, based on new dreams and hopes.  But I still have this moment to cope with—this mourning the loss of what I loved and this struggle of having to find myself anew.  Everything I fought to achieve seems lost to me, and that is a difficult realization.

I am keeping some files.  I am holding on to some of my favorite and most transforming and best loved articles and papers.  At some point, maybe I will read them once more, or use them for my current writing projects, or offer them to others who are in need of the knowledge they hold.  Because I am not able to, nor do I wish to, erase the past twenty years of my life.  Those were good years in many ways.  And I don’t think they were wasted.  I learned.  I grew.  I developed my thought.  I opened my mind to new information.  I believed in myself.  I accepted my intelligence.  I embraced diversity.  I became more and better than the person I had been before embarking on years of study.

I have all of that growth and development to hold, even while I let go of the goals I had made during that time.  And that is wonderful.

But today, I am feeling a bit melancholy about the ways that I am having to change my view of myself and my accomplishments and my goals for the future.  It is a loss.  A deep loss. (And I often feel like I have had more than my share of loss already in life.)

It isn’t an easy process, this editing of my life and self.  Edits to my writing seem easy in comparison.  Rearranging my sentence structure is so much less work than rearranging a life.

There is one comfort I have in this process, which is the feng shui principle of making room.  New things can’t enter into your closet, or your office, or your life, if there is not space for them to move into.  So, a minimalist environment opens up all sorts of possibility, where an environment stacked and stuffed with things has no room for more.  I am tossing my past and my previous ideas of myself, but I am opening up room for the new future and the new ideas of myself to come.

And they will come—eventually.

My file boxes are already beginning to fill with clippings and found objects that would go great in an art project.  My bookshelves are filling with coloring books and meditations and fiction.  My blank pages are filling with ideas of who I am and what I might wish to pursue.  My closet is filling with clothes that actually fit over my ass.  My spare room is transforming into a yoga studio.  My mind is becoming a place of peace.  My heart is becoming more open to others.

And I suppose that I can find joy in the fact that I am editing a life—that it is being improved and perfected and changed and made new—and not ending a life.  There is more to this story.  There is more to come.

Some things never change

I’m sort of a change addict.  I rearrange things all the time.  From the files in my office to the paints in my studio to the furniture in the rooms to the items on my bedside table, I am always looking for another way to place things.  And I often like to pretend that it is for increased efficiency—and sometimes it accidentally brings about increased efficiency—but I think it is just that things need to be constantly in flux for me to feel comfortable.

This is actually the opposite of what makes most people comfortable.  Stability and stasis and knowing that you won’t bang your toes on a credenza that wasn’t there yesterday seem to be more comfortable for most.

I used to attribute my desire for change to boredom.  I just figured I was the kind of person who needed new scenery … and that is true in part.  Highly intelligent and creative people often need movement and change, and lots of us live in mess or chaos as a result.  We feel life more than just live it.  And, like anything that you see or feel each and every day, you become numb to things if they stay the same for too long.

Once my daughter’s teacher thought she would place a brightly colored sticky note to my daughter’s desk to remind her of something.  That sticky note had an effect for about a week and a half.  After that time, the note just became a part of my daughter’s normal desk environment.  It no longer screamed brightly to remember, but it sort of faded into the everyday.

For those of us who feel our way through life, everything fades into the everyday, and we need something new in order to feel stimulated and excited and motivated.

I am one of those people, so boredom is an apt way to describe much of my need for change.

But, over time, I discovered something else about the way I desire change.  It felt like an escape.  It felt like freedom.  It felt like a release from captivity.  And it still does.

I often describe my situation as “stuck”.  I can’t afford to move.  I can’t find decent housing with a voucher that is meant to safeguard the poor from not finding decent housing (another tale for another time, perhaps).  I can’t leave the state without throwing my disability case out the window after 16 months of fighting for my rights.  I can’t change the ways my body and mind react to particular stimuli.  I can’t end the pain that plagues my whole body.  I can’t stop seeing the doctors and therapists who already know and have seen the ways my disease affects me.  I can’t end the awareness of the past events that led to this point.  I feel trapped within my disability and within a particular way of living as a result.

And I want to escape once more.

I keep changing what I can.  The furniture, the nightstand contents, the filing system all move around.  But I’m still feeling stuck.

Last night, while I was attempting to catch up on the washing of dishes (a failed attempt, but a bit of progress at least), I was thinking about my relationship with my mom.  It wasn’t great, for most of my teen and adult years.  We didn’t understand one another very well, and communicating emotion wasn’t a strong point for her, and obeying without question wasn’t a strong point of mine.  We argued as a result.  But last night I was thinking more about how she must have felt when all I wanted to do was escape, and even though I don’t really think my mom floats around my kitchen in some non-corporeal form, I said aloud, “I’m sorry if it hurt you Mom, but I needed to try … I needed to try to be free.”

I hadn’t thought of what I did from age 18 to 28 as trying to be free before, at least not in any real and deep sense.  But I was trying to be free.  I didn’t want to be captive or kept.  And running from place to place and moving from man to man and snorting line after line felt like flying after years of living caged.  It wasn’t a crazy person living out her crazy.  It wasn’t a woman lost seeking a place to fit in.  It was freedom–finally freedom!  And all of those things in all of that time didn’t necessarily serve me well or bring me wholeness and good, but they weren’t necessarily meant to do that anyway.  They were just meant to be the opposite of captivity.

When my little dog gets free of the tethers that hold him, he runs like a motherfucking bat out of hell.  He doesn’t know where he is going, or why.  He doesn’t care.  He just runs, and runs, and runs, and runs.  And there isn’t any catching him.  You have to run past him (which, by the way, sucks for a good runner, so the few times I have had to do so I nearly died as a result) and then convince him that running in the other direction sounds fun, leading him back toward the house or car from which he escaped.  Freedom.  Flying.  Just going because you are finally allowed to go.

I spent 10 years of my life flying in glorious freedom.

And then, I went back to living as others expected or anticipated I would or should.  Because you can only run so far before you tire and need to turn around.  But I still miss the flying.  I still miss that freedom.

There are all sorts of expectations once more, and there is a lot of weight to the conditions of disability and poverty that I am struggling to carry, and there are rules and rules and rules about how you may or may not be when you are dependent on others (and very few of the rules or expectations are reasonable or intuitive or helpful).  And I start to feel trapped and stuck and without an exit plan.  It reminds me of being a child, and not being able to express that really bad shit was going on in my life, and not being old enough or aware enough to leave the situation to which I felt captive.  All the ways I tried to escape that captivity—throwing tantrums, threatening my abuser, trying to run away, becoming despondent, sleep walking, wetting the bed—went unrecognized or were blamed on other causes.

I don’t fault the people in my life who didn’t know those were attempts at escape.  It isn’t easy to understand when you haven’t been informed or educated about such things.  All you see is a bunch of crazy and inconvenient and inappropriate, and you don’t know how to fix it.  And even when I did get the attention of therapists or doctors, they were kinda shitty therapists or doctors, and they did more harm than good in most cases. I wasn’t properly diagnosed with C-PTSD until a year and a half ago, because I had a breakdown/freak out/panic in the right place and the right time, for a change.

The thing about this desire for freedom, however, is that it starts to morph into something new as I age and become more aware.  I still want to run away, but I want to run to a place that brings stability, a therapeutic environment, and release from the debt and dependence of poverty.  Being free looks more like stasis and stability than I like to admit at times.  And I think that I would still rearrange the furniture and the files and the art supplies and the books in this more stable version of freedom, but I don’t think that it would make me feel stuck or captive or without freedoms.  If I had a little house on the beach, just big enough for me and the dog, and the occasional visit from my dad or my daughter, and if I could swim every day and get a massage and take a walk along the water, and if I could write and create and sell my work, and if I could grow a few plants out in my tiny garden instead of on an apartment window sill, and if I could choose the life I want and not be forced into situations that I don’t want, I could feel free in one place, and not ever need to feel the need to flee or fight or struggle toward something else.

I started with a title that implied that things don’t change.  And many things don’t.  But many things do.  And it isn’t true that the more things change they more they stay the same, even if my freedom becomes a little cottage which I own and can settle into for years to come.  Because, while that seems like stasis, it is much different from anything I have experienced in all my years—it is something I choose, without influence and expectation and abuse and appropriate cultural expression and manipulation and guilt and force making me choose (which isn’t really choice at all).

Much has changed inside of me, and in the way I see myself, and in the ways I understand my history and my illness, and in the ways that I act and react because of new awareness, and in the way I treat myself as a result.  But much has not changed.

I still long to be free.

I still want to fly.

 

Can’t

I can’t write this week.  I’ve tried several times.  Two or three paragraphs in, it falls apart and the message I meant to speak becomes a ball of words with no real significance.  I’m too tangled up inside, I think, to be able to present something linear and coherent on the outside.  I’m a mess.  I’m in a dark and desperate space, and that darkness and desperation are coloring my words.  I never want to speak darkness and desperation.  I want always to speak hope and love and light.

And right now, I can’t.

If you can’t say something nice, don’t say anything at all.  That statement runs through my head.  But it isn’t niceties that concern me, since I often offend others with the ways I communicate.  It is the absence of the hope and love and light that concerns me.  I never want to offer the world my depression and my struggle and my suffering.  I always want to offer the beauty and the good, even in the midst of pain or confusion or whatever the day might bring.  And for the moment, I can’t.

I can’t find the positive in the negative that surrounds me.  And I can’t be the positive in the negative that surrounds me.  And I can’t even want the positive in some moments.  I sometimes get so tired of the invalidation and the inability and the incapacitation present in my life that I want to lie down to sleep and not get up again—ever.

Yes, that sometimes means I am suicidal, but it doesn’t mean that today.  It means that being in this much pain and suffering this much mental anguish and being marginalized in such a way is at times unbearable.  I simply cannot imagine coping with it for one more day.

But tomorrows keep coming, so I keep coping.  Even on the days I feel I can’t go on, I do.

Because I also can’t stop.  Not unless I die.  And a life of suffering still outweighs death, whether that is my choice or my survival instinct or the influence of some outside force, so I keep choosing to live on.  The idea that I can’t stop overpowers the idea that I can’t go on.  So I go on.

I can’t keep this up, but I can’t quit.

Where does that leave me?

Stuck in a place I hate, I suppose.  At least for now.  Maybe tomorrow will be better. Maybe tomorrow will be worse. I don’t know.

I never know.

So I can’t tell you.

Don’t Struggle, Just Stab

There are several ways of being in the world, I suppose.  We all choose in every moment how we will interact with the world around us.

This morning, I emptied a container of one of the two chemical-laden delicacies I allow myself–flavored non-dairy creamer (the other is processed cheese…because it melts so beautifully and reminds me of my grandmother, which is probably another story for another day).  Do not fear!  I was at Costco the other day and have a pack of three more bottles in the back of the fridge.  But the crux of our story is not the creamer itself, but that little foil seal that covers the bottleneck to ensure freshness and no leakage.  That little foil seal can open up worlds of understanding.

You see, in general, I stand for several minutes pulling on the tiny flap of foil that pretends to be the secret to removing the seal.  You are just supposed to pull that flap, and voila, it opens, right?  Wrong. I end up pulling with my right hand, then pulling with my left, then pulling with my right again.  Then I begin what we will call the “pep talk stage”, where I begin to offer myself encouragements:  You can do it!  Just hold tightly and pull steadily.  You’ve got this.

The next stage is called “pep talk two” and shifts my encouragements to self over and begins encouragements of the bottle seal:  C’mon!  You are almost there.  Just peel back a little more.  You can do it!

And then, finally, we reach “frustration”:  Why in the fuck can’t I open this thing?  Is it so hard to make a seal that opens?  We can send people out to live in space, but we can’t invent a seal for the coffee creamer that you can open!  AAAaaahhhhhh!

And there we have it folks.  This is the way I interact with my world, on the regular.  This is how I live.

There are myriad reasons why I turned out to be a person who fights at a thing.  I was sort of born a fighter.  My mother realized this early on, and it plagued her for many years to come.  I needed a “why” to stop my fight—a really good explanation or reason for the end to my search or struggle.  Another person’s word that it was easier to tie with “bunny ears” than in the convoluted way I was approaching tying my shoes was never good enough.  I needed to struggle with those shoes for years to get to the way I discovered was easiest (which turns out to be bunny ears).

I think the two most affecting reasons for my struggling attitude, however, are stubbornness and intellect.  One is usually seen as a positive, and the other as a negative.  But, often in life, I see them conversely to the way many might.  Stubbornness, which is usually considered bad or wrong or unhelpful has gotten me through many a difficult situation.  When you are oppressed or captive or addicted or overwhelmed in any way, stubbornness can be your savior.  Being stronger in will than my opponent got me through not only debate team, but through years of abuses and marginal living.  I kept up the fight some days only because I was too damn stubborn to lose—too damn stubborn to die there in that bad space.  And the other reason, my intellect, is definitely often a positive thing.  I am so glad that I am capable of abstract thought and love to dive deep into research and just tend to be smart (sorry for the horn tooting there, but it is true that I am smart).  But, the desire to know is often the desire that gets me into trouble as well.  I want to know how that feels or see how that works or decide for myself which is the best way to approach an idea … so I have to do all the things and explore all the ways of approaching that idea on my own, which has gotten me in spaces where I would rather not be.  If people could have said to me, “drugs are bad”, and I could have accepted that as true without further investigation, I wouldn’t have found my great joy and deep struggle with cocaine.  But because of my intellect and that desire to explore ideas to their conclusion, I did find that joy and that struggle.  Lucky for me, the stubbornness to not be controlled by a substance has won the day for about 5,500 days in a row now. (One day at a time!)

So, today when I needed to open the coffee creamer, my stubborn and smart started getting together to fight the fight and open the foil, once more—because this is obviously a regular occurrence.

But, something about the way that I have interacted with the creamer for the last 25 years suddenly seemed ridiculous.  Suddenly, I was tired of fighting the foil.  And I said to my self aloud, “Don’t struggle, just stab.”

Don’t struggle, just stab.

Where did that come from?

I’ve spent every foil opening experience in the same way.  I’ve always tried until I succeeded.  I’ve always kept up the fight.  But not today.  Today I chose a different way of interacting with my world.  I chose a different way of being.  I chose a knife to the foil.

Now, this choice might seem insignificant to most.  But it isn’t.  It is significant because this is a core way of being for me.  It is deeply ingrained in my psyche to fight.  A core belief is that fighting is the only way out.  And it is coupled with other core beliefs, like you have to make it on your own because others won’t help, or not engaging shows a weakness, or life is a series of conflicts, or only the strong survive.  All false beliefs, by the way, but core beliefs are not quick to change. And mine were shaped in some terrible circumstances, so rooting them out and finding them so that you can change them takes years of facing those terrible circumstances again.  It pretty much sucks to do that.

I am doing exactly that.  I am facing years of terrible circumstances and trying to find ways to interact with those things differently, and to see myself and my world in a better way.

Stabbing the foil embodies the change that is happening in me.  Don’t struggle, just stab.  Take the easier route to your desire.  Give up the fight.  Yield.  Do the smarter not the harder thing.  Win by letting the foil win.

Learning to engage life and thought and people and things in new ways is really difficult work.  But, the foil is evidence that I am learning to do just that.  I am doing that difficult work, and after years of doing it am seeing results.  I like those results.

I took a knife and stabbed that foil—killed that shit.  And it took mere seconds to accomplish. And I don’t feel like I lost the fight.  I feel like a winner!  I am patting myself on the back (figuratively, not literally, because the neighbors may be watching)!  I am looking at all the ways that offering myself the easy option might change the world for me.  Finding Mr. or Ms. Right Now, rather than keeping up the struggle to find Mr. or Ms. Right, letting Luke lift the groceries when he knows I am exhausted rather than trying to be stronger and less tired, realizing that swimming and bathing and eating and writing a bit can be my weekly activity rather than trying to return to the concept of “better” that causes me to strive for more strength and more strength of will than I am able to obtain in this disabled body.  I choose how to interact with the world, and I am starting to choose letting it all go.  Don’t struggle, just stab.

Unfortunately, this mantra won’t literally work in all situations.  When I am frustrated with my brother, I can’t just stab … at least not in the literal sense.  (No killing relatives, people!  I am in no way promoting actual stabbing in all situations!)  But maybe in the figurative sense, I can just go the direction he wants to, even though I am aware that he is going the wrong way. I don’t have to convince him he is going the wrong way, but can let him figure that out on his own.  I’ll just turn up the radio and enjoy the scenic route. And that way I haven’t lost anything. But I’ve won on the inside, just like I did with the foil, and can figuratively pat myself on the back for not engaging in futility.

Don’t struggle, just stab.

And I know that my stubbornness is still a gift that will get me through the tough times.  And I know that my intellect is still a gift that will bring me joy and difficulty.  But I know that I get to choose when to fight and when to not fight.  And I get to leave behind any of those core beliefs that are false, as soon as I am able.  And I am changing on the inside, and learning to be a better form of me.  I’m letting go of some of the instinct to approach the world with anxious striving, and learning how to approach it with a quiet knowing—seeing the chaos but not being drawn into it.

I don’t need to react in the ways that society expects me to react.  I don’t need to react in the ways I did before, even when before was just yesterday or earlier this morning.  I don’t need to react at all, if I don’t want to.

We choose the way we interact with the world around us.  And I am choosing more wisely and in ways that help instead of harm me.  I am choosing not to struggle and fight and churn and flail through life.  I am choosing to just stab at the foils of life—deleting that Facebook friend, or ignoring that comment, or choosing joy in the moment, or letting my inner child be my outer adult, or sliding down banisters instead of tiring on the stairs, or smiling instead of scowling as I walk through the subway tunnel, or offering peace instead of lecturing when my daughter is having a bad day, or offering myself kindness instead of chastising my lack of productivity.

Don’t struggle, just stab.