Wide Awake

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

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

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

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

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

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

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

Morning is another story.

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

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

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

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

Let me elaborate.

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

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

Here is why:

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

I’m wide awake.

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

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

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

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

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

I’m wide awake.

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

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

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

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

I am wide awake.

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

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

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

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

But there was also light.

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

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

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

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

I’m wide awake.

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

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

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

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

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

There’s more to me than people know.

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

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

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

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.