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.

 

Too Much

Yesterday was too much.

In fact, the too much started the day before, and I didn’t do a good job of mitigating it at the outset.  But who is great at mitigating, really?

On Thursday, when I took the bus to the doctor, there was so much chaos.  There was a woman who insisted her daughter, who looked to be about 10, was 6, so she didn’t need to pay fare for the girl.  And she kept arguing with the driver long after she go to her seat (not having paid, and seemingly having gotten what she wanted).  She would yell some angry assertion about his dumbness and him minding his business, which I am relatively certain he wanted to do, but she kept yelling out offending shit, and it is really hard to mind your business when someone is shouting theirs at you through the bus.

Not long after, a man got on the bus without paying.  We waited several minutes while the driver tried to get the man to leave or pay, to no avail.  So, finally, and with much frustration, the driver went on with the route.  I was running late by this point, and getting internally frustrated by that lateness.  And then the lady with the very-old-looking-probably-not-6-year-old started up again.  She was now angry that the driver let the other man get by without paying.  Even though she had gotten by with not paying fare for the child.  It became a mess of people yelling out random shit about the offenses against them, when the only person who could rightfully be upset, in my opinion, was the driver of the bus.

It got to be too much.  I quickly snagged a seat that let me curl up toward the window and cranked the volume on my headset.  But too late.  Tears started forming, for one reason or another in the corners of my eyes.  Was it fear? Frustration?  Stress?  Anxiety?

Whatever it was, it threatened to pour down my cheeks, which would not have been a great thing and would have added to my emotional upheaval.  So I pushed it back.

There is and has been a place to push things since my childhood.  I know it well.  So many things were too much for my small psyche, and I could not deal—not just would not, but literally was incapable—with that excess.  So, it got pushed into the place.

Obviously, the place isn’t a physical space, as far as we know.  There are multiple synapses that stop firing or misfire or disconnect in the dissociative brain.  It would be much easier if there was one spot that held all the excess. Maybe then we could zap that space into connection, or cut it out altogether, or some other frighteningly macabre way of coping.

As It happens, there isn’t an easy solution, macabre or no.

Once I got off that bus, onto another, and eventually to my appointment, the overwhelmed feeling should have dissipated.  But it didn’t.

That question.  The question.  “When did you first become aware that your speaking was different?”

I was meeting with a vocal specialist.  The troubles with my voice have kept me from living life in the way I would otherwise choose.  I long for my singing voice.   It is definitely time to address the situation.  But, maybe somewhere in the back of my mind, or shoved into the place, there was the fear of this question.

I didn’t notice.  Tony noticed.  Tony mocked me, mimicked me, publicly shamed me.  He told me, in the most hateful and terrible ways, that my voice was different—a strange way of clearing my throat, or making a guttural sound where there ought not be one for an English speaker, or the way that my words have a bit of a sing-song ending at times.  He used that vocal abnormality to hurt me.

And when she asked the question, and I tried to respond, I cried.

The thing is that the place sometimes overflows.  No amount of strength or determination can keep all the too much things from spilling over at times—usually at very inopportune times.  And the place overflowed onto my face and neck in the voice doctor’s exam room.

She was kind.  She was understanding.  And she let me get through that little moment when the place door creeped open a sliver and stuff spilled out, and then she got on with our work.  She showed me the inside of my throat while I was speaking and singing.  She referred me for voice therapy, changed up my meds, and referred me to neurology.  Seeing my throat and my tongue and my voice box in action made the moment when I cried seem miles away.  There are reasons.  They can be addressed.  And that brought all sorts of relief, and shoved Tony’s asinine behaviors back into the place.  Those behaviors might come out in next week’s therapy session, but for now they are not overwhelming anymore.

You might think that is the end of the story.  I faced the overwhelming events and got on with my life, yes?

No.

The feeling didn’t lift.  I watched Netflix.  I worked on crafts.  I took a shower.  I took a nap.  I went for a swim.  I got a haircut.  I took a walk.  I wrote.  I entertained the dog.  I texted with friends.  And through all of the really good coping strategies, the feeling still stuck.  It wouldn’t leave.

And it became more and more pronounced.  It became more anxious, more desperate, more affecting.  Until last night when the place sort of exploded into the forefront of my brain.

Here’s the thing.  The place scares some people, but some people take it in stride.  I’m forced to take it in stride, whether I want to or no.  And I know that the preference for others is to not take it in stride.  There are only a few people in my life who can and will and do stick around when the place shows its face.

Last night, it unleashed itself in full force upon the “bae of the day”.  (I call him that not because he is expendable or will be replaced tomorrow, but because I’m not going to use his actual name here—too early for that.  Plus, it rhymes, and who doesn’t love that?)

I think that I was a bit shocked when all the overwhelming feelings channeled into me having crazy anxiety over what and how and why we were connecting with one another.  I am experienced enough to know that it is best to let things play out in new relationship of any kind, and not to force it.  But the place doesn’t know that as well as I do.  The place might be in my head, but it doesn’t usually communicate with the other areas in the brain, so it doesn’t act with reason.  And this irrational fear that I was misreading all the signs and that I wasn’t important and that I was secretly being played came flying out of the place.  And bae of the day has NOTHING to do with all that shit that escaped the place.  He has in no way acted in a manner that would make the place’s emotional outburst reasonable.  But, again, the place doesn’t act with reason.

But here is the beautiful part of the story.  He met the place with unflinching care, kindness, and understanding.  He engaged the place with honesty and respect.  He accepted the place, and he honored it, and in doing so he accepted and honored me in ways that I don’t even fully understand.  Nobody has ever met the place with as much grace as bae of the day met it.  And because he did, he immediately shut it down.

He shut it down not in a way that made me force my feelings and overwhelmed state back into the place.  He shut it down in a way that let me leave it out.  He shut it down in a way that allowed me to let it be, let it show, and potentially let it go.

And this morning I was thinking about it, as I woke in peace and felt lighter than I have in many days, and I wondered what life might be like if all the people met my place in like manner.  I’ve spent about 35 years managing and monitoring the place.  I’ve been trying to stuff more and more into that place as more and more things turned out bad and wrong and painful.  And I can count on one hand the number of people I trust to meet the place with the grace, kindness, and understanding that is required to process, and to make the place a bit smaller.  But what if there were more than a handful of people who allowed the place and its secrets and its struggles to come out into the light?

That would be earth-shattering.  That would change everything.  That would be a total life-altering experience.  And that would heal so much that is broken.  The place is filled with brokenness.  That is its hallmark.  That is its purpose.  That is its truth.  It is filled with every shard that ever broke away from my heart and my spirit.  It is filled with every hurt I cannot bear.

But when someone else bore the hurt with me, everything changed.  That hurt couldn’t hurt me quite as much anymore.

I’ve learned over a lifetime of keeping the place stocked with secret pain that people don’t like to bear the hurt with me.  I’ve seen the little cracks that open up end relationships, create dangerous situations, and bring shame and judgment upon me.  And I cannot imagine EVER opening the door to let everything out at once.  That might be downright lethal.

But I have more hope today than I did yesterday.  I have more hope that there are people out there like bae of the day.  I have more hope that the place could potentially be emptied bit by bit, shard by shard.  I have more hope that there is healing, and that my whole life doesn’t need to be defined by this PTSD label (though some of it will always be there—my brain scans will attest to that).

And if you are a person who has quit me or threatened me or judged me over the place, I forgive you and I understand that.  I have days like yesterday, when I cannot even cope with what lives inside of that place, so I certainly have no hard feelings toward others who cannot cope with it.

If you are a person who understands this post, and feels the weight of the place in your own spirit, know that there is help out there, and you need not be ashamed or afraid—but you are also totally allowed to feel ashamed or afraid, you are entitled to those feelings.

And if you are a person who has faced the place and stayed in my life, you are fucking amazing.  And I will cling to your responses, continually holding on to the hope that the place might empty, and my heart might heal.  I love you like crazy.

There are these challenges to living with a dissociative disorder.  There are these struggles with managing the rage and the depression and the isolation that such disorders cause.  There are these outcomes of loss and further pain that accompany the misunderstandings about and the actions precipitated by such disorders.  But there are also these people who understand, and who love, and who respect, and who assist, and who offer chances and graces and changes.

I am so grateful for the people who support me in any and all ways.  But I am most grateful for those who let the place be a part of me, and don’t shy away, and let me work my way through it and toward an integrated brain and a more balanced life.  Too much suddenly becomes a tolerable amount when you find those who would bear the weight alongside you.

I’ve found another who will help me bear the weight of the place. I’m grateful I have the opportunity to know him.  I’m grateful for what he carries.

Today is a tolerable amount.

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.