And the Storm Rages On

It isn’t easy for me to be vulnerable.

I remember a friend from cohort saying to me once that I was very open by not very vulnerable, and I was upset by that statement, because I didn’t think it fair to separate the two out in that manner.  Being honest was, in my mind at that point, being vulnerable.  Now I understand more fully that there is a difference, and that Chris was correct in his assessment.  It is easy for me to tell the truth, and it is hard for me to be open about how that truth can harm me—how exposing the heart of me is different from exposing the facts of my situation.

I was recently quite vulnerable about the financial situation that I find myself in, and the subsequent challenges that my daughter is experiencing.  I let people know how hurt and frustrated and damaged and judged and punished I was feeling as a result of all sorts of things that are far beyond my control.  And I didn’t shy away and rewrite and edit and try to add decorum or lessen the blow of my emotions.

Overall, the response was positive.  I had a few people who commended my authenticity and vulnerability in stating not just the true facts, but the challenge of my own feelings about those facts.

But there was one response that has been eating away at me for days now, and I can’t help but craft some sort of retort.  I won’t start some strange, heated Facebook argument about it, however.  So, instead I want to address it here, and, hopefully, give it a worthy apologetic.

After lamenting that my daughter was forced to drop out of her educational program just 6 weeks prior to graduation due to financial constraints, and noting that my own challenge of being trapped in cycles and systems that keep me in an impoverished state, rather than offer me the chance to thrive—both of which I consider to be rather unique to me in my particular circles of acquaintance and/or influence—I received this comment in reply:

It’s not just you, Christy.  Nor is or (sic) just single income households. The economy is tough and there are a lot of people that I know right now that are struggling to keep the lights on. 

                I’m so sorry. I know what you’re going through when the stress, the anxiety, disability, and desire all meet in the perfect storm.

                I’m praying for you guys…

And under that was a meme that said:

Sometimes God calms the storm.  Sometimes He lets the storm rage and calms His child.

I later texted another friend that I was “Zen as fuck” until I read that comment.

I can’t fully express how upsetting comments like this are for someone in my situation.  The idea that my situation is just like a whole lot of other people’s situations is laughable.  To normalize what is incomprehensibly abnormal as a strategy to deny me aid is not one that is foreign, unfortunately.  People love to rationalize their refusal to help their fellow humans as “reasonable” instead of cruel or evil in all sorts of ways.  And the easiest way to do that is to dehumanize the person in need—using racism, classism, moral relativism, or some other ism to blame the needy for their own struggle.  That dehumanization is much more difficult when you sat beside said person in seminary classes and your child was babysitter to mine, so you resort to the second easiest rationalization—the “lots of people” argument.

“Lots of people” have disabilities and they…

“Lots of people” are divorced and they…

“Lots of people” are having financial challenges.  “Lots of people” have anxiety.  “Lots of people” want life to be different than it is.  “Lots of people” struggle.

All of this is true.  So, in the mind of the one arguing for the many, the one is simply an exaggeration of or a dramatic expression of what all sorts of people are dealing with.  They “understand”.  They “sympathize”.

Bullshit.

I call bullshit.

And I get to call it because of this ugly feeling in the core of my being whenever I get to read these sorts of comments under my vulnerable posts.

Ironically, just above this comment was a series of comments and replies that talked about how I hate to open up because of the times that I opened wide my arms for a hug and got a gut punch instead.  This “lots of people” comment is a gut punch where there should be an embrace.  And I will tell you why this feels like a gut punch.

My vulnerability is not something that is shared by lots of people.  It is an intimate thing, to share my heart and my deepest wounds and fears.  To say that lots of people are touched in the same way—even if it were true—is a betrayal of my trust.  This comment is akin to a friend confiding in you that they were raped, and you saying, “Lots of people get raped.  I know what you’re going through.  Sometimes you need to let go of shit and let God change your perspective.”

Gut fucking punched.

I’m deeply involved in all sorts of methods for changing my perspective, by the way.  I meditate almost every day.  I practice yoga.  I practice gratitude daily.  I use several mindfulness practices, and I have all sorts of routines in place to keep my heart open, my outlook positive, and my disordered thinking in check.  When I said that I was Zen, I meant it.  I could not have been calmer when I received that offending comment.  And I addressed it in the calmest manner possible:  I ignored it.  I talked to a close friend about how it made me feel, and she supported me through the event and helped me to keep a positive perspective throughout the situation.

So, even after being gut punched by the insensitive rationalizing comment, I kept my cool demeanor.  I didn’t need “God to calm his child”.

But the storm is another story.

The storm should NEVER have been here in the first place, and yet it rages on.

This common little meme, and the saying upon it, are very upsetting for me.  They assume that the things in life that harm us are somehow meant to be hanging around our heads so that God can teach us some sort of lesson in how to keep our cool under pressure.  And I don’t understand where that idea comes from, but it is a terrible sentiment, and we need to put an end to it.

My challenges stem from disabling conditions, yes.  And those disabling conditions might never go away or be cured.  I understand that a certain amount of coping is required for me to navigate life with those conditions.  In that sense, there with always be challenges.

But “the storm” for so many of us can simply go away if people stop using the rationale to avoid helping one another and affect change.

My storm includes a system that doesn’t fully support those in our society who have disability, and only offers me $750 in cash and $15 in food benefits, plus a housing stipend.  Adding those together doesn’t make a livable situation, and I am constantly in need and constantly in danger of losing my home, starving, not having my medications, or some other disastrous challenge.

My storm also includes the challenge of mental illness that has been present since early childhood, and which left untreated for so long has influenced my life in countless ways, making it impossible to consider any decision I’ve ever made one that wasn’t made under duress, and challenging me to figure out who the hell I am, and why.  I don’t need a midlife crisis, because I’ve never had an independent identity—my crisis is ongoing.

My storm includes a divorce from a horrible man, whose damage to my person and my psyche cannot and should not be downplayed, for any reason.  And that also means an absent father is a part of my daughter’s storm—and the storms of our children influence our own storms.  The weight of being a single parent goes far beyond “single income” households—and I’ve generally had a no income household, because of my difficulty with employment due to PTSD.  Having a completely absent parent, who contributes in NO way, is not anything that a person who lives in a two-parent home can ever imagine.  It still infuriates me when married people say things like, “I’m a single parent for the week”, when their partner is away on a trip or something.  Having a partner who is physically absent for a matter of days is nothing like having no partner at all.  You still have all sorts of support, financial and emotional just being the tip of the iceberg.  You can’t imagine none of that being present, ever.

My storm includes debt totaling over $250,000.  Most of that is from student loans, and much of the rest is due to the three years’ time that I spent waiting for my disability claim to be approved.  I was unable to work and waiting for the Social Security Administration to look at the body of proof that I was unable to work and sign off on my meager $750 a month payment.  In the meantime, I had nowhere to turn but credit cards, my dad, and charity.  So, I owe far more than I could ever pay back on my own, but I am not eligible for programs that would forgive these debts.  So, I sit and owe, and the interest just increases the amounts and increases the amounts.

My storm includes the complicated situation where my adult daughter cannot be considered an independent student, according to the rules of the government, but I cannot claim her as a dependent, according to the rules of the government.  This leaves her with a shortfall that other students don’t need to deal with regarding their own financial aid.  She can’t take out more money, but I can’t take out money on her behalf.  Because she is in this weird limbo state, because I am a disabled individual.  This isn’t her fault.  This should not be a storm she needs to weather, because I should be able to provide for her.  But I can’t.

So, my storm also includes the constant feeling of guilt because I cannot offer my daughter enough to put her in a position where she is on equal footing with her peers.  She isn’t set up for success.  She doesn’t have the advantages that her cousins and her friends and the children of the commenter on my post have.  I can’t offer her a chance at starting out at zero sum and working her way up from there.  She starts with my handicap.  She starts at the back of the pack, because I can’t give her an education and rent money and clothing and food and care packages and enough love to make up for the losses that she has suffered and the abandonment that she has felt.  I have loved her fiercely.  I have done and continue to do all that I can.  But it will never feel like enough.

My storm includes shame.  So much shame.  Not being a pure virgin girl, and not knowing how to stop being abused, and not understanding what that abuse even was or meant.  The shame of hiding and the shame of secrets and the shame of difference.  My storm later became one that was volatile and violent and full of rage—so much rage.  I felt like I was the storm, or like the storm lived somewhere deep within me and it was trying to get out and I was desperate to hold it in—failing to hold it in.  And then the storm became the shame of promiscuity and feeling like all of those words that are used to keep women captive—whore, slut, bitch—were the only thing that I could be, tainted that I was.  And it felt good to be used in a sense, until it was over, and then the dissociative state wore away and the wave of shame washed over again and I started holding in the storm again, as long as I could … until the next time.

My storm includes being all the people that you could rationalize away as not quite human.  Homeless.  Addicted.  Divorced.  Unemployed.  Mentally ill.  Using my body as currency.  Shielding my body from blows and then crawling into bed next to the one who wielded them.  Perpetually single.  Having sex with partners that were not my husband.  Having sex with partners who were not men.  The girl who stays out too late.  The girl who mows her lawn on Sunday.  (Oh, yes.  Some people consider that a grievous offense!)  I received anonymous notes about my bad behavior.  I was told I could lose my scholarship for having sex.  I got dirty, side-eyed looks from others.  When I talked to your husbands after church, you would suddenly appear at their sides and pull them in a different direction—like talking to me would lead to me stealing them away to mow lawns and suck on body parts by sundown.  In truth, I was just interesting and unconstrained by convention.  It’s an attractive thing to be interesting and unconventional.  (Translation:  read some books not written by female bible study developers and then discuss the contents with your husband … he’ll be mowing your lawn in no time.)

So, my storm also included years and years and years of not having my needs met. Hence the comments about opening my arms for a hug and getting a gut punch.

I’m still not surprised when I open myself up and somebody hits me hard, instead of offering me love and support.  Unfortunately, it is what I have come to expect.

The dumb thing about that meme is that you don’t have to tell me that the storm might not go away.  I fully expect that storm to fucking tear me to pieces and kill me.  It takes weekly therapy, twenty drugs, a host of friends, and all sorts of self-care strategies to convince me that the storm can be survived.  It takes every ounce of energy I can muster to get up in the morning and face the storm again.  It takes all manner of strategies to be my Zen self in the midst of all this chaos and terror and shame and unmet need.  But I do it.  I do it day after day after day.

I keep on facing it.

And some days the storm wins a little, and I freak out on a new potential partner with a host of doubt and shame and fear.  Other days I wake up and counter that with a bit more of the Zen and apologize and open up and tell him why I reacted that way, hoping that he will meet my need and connect with what I am saying … and not gut punch me while my arms are open.

But I face it.

And your job, as the people who would support me, is not to remind me that there is this big, ugly, terrifying storm that I am working so hard to live in the midst of without losing my shit.  Your job is to do everything that you are able to make that storm disappear.  Your job is to offer support where there wasn’t any.  Your job is to accept me and not shame me.  Your job is to love and not harm me.  Your job is to prove that the storm isn’t going to win, and that we can make all of that crap go away by being better than the crap.  We can change and grow and not hurt one another anymore and counter the falsehood with truth and slay the dragon of cruelty with a sword of kindness and acceptance and love.

That is the only way I know how to continue to face the storm—by trusting that we can eventually find calm skies for everyone.  Without that assurance, facing it is a worthless effort, and I may as well off myself now.  (That isn’t a suicidal statement, fyi.  That is me drawing on the extreme to make a point.)  Because if there isn’t an end to the need and the shame there isn’t really a point in moving forward.  And I don’t mean just the money—I mean the need for understanding and connection and love.  But I define love as “meeting needs”, so the money is a part of the equation.

If you are to assist another, you need to do more than tell them that there is struggle all around them and to work on their perspective.  You need to work to end the struggle.  Because no matter what your perspective is, if the struggle persists, you aren’t doing what you should be doing.  You aren’t helping.

I know that standing up against the storm isn’t an easy thing.  It is much easier to say, “Check your perspective” or to hide in some shelter and hope that the storm passes.  But for many of us—and for me—the storm rages on, indefinitely.  And that storm can’t stop.  It won’t stop without the change of perspective from many other people who are not me.

It is often not the people suffering, but those who are unaware of or those who are causing the suffering who need to change the way that they are operating in the day to day.  I’m usually not the one doing things “wrong”.  I’m generally suffering because of the things that are unjust, not the things that I cannot accept but that are perfectly fine.  And the ones suffering an injustice generally don’t have any power to make the change required to stop that suffering.  If they did, the change would happen hastily and without resistance.  Because, despite the lies that many in power like to feed you, people don’t wallow in poverty and addiction and illness and homelessness and sex work because they want to.  Just like Kanye West is an idiot for presuming that slavery was/is a choice, anyone who thinks that people live in the middle of storms because they like how lightning feels is an idiot.  Those people don’t have the shelter they need.  You must find ways to provide it for them—preferably by asking them how you can best provide them shelter.

Robert F Kennedy once said:

Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current which can sweep down the mightiest walls of oppression and resistance.

This is the type of shelter-building act that we need in response to those who are in the middle of storms opening their hearts and asking for assistance.  Building currents that sweep down walls—sweeping away the clouds of the storm and bringing, perhaps for the first time, calm, blue skies, should be the goal that we aspire to reach.  Asking people to be quiet and calm in the middle of injustice is not the answer.  Fighting against injustice is the answer, on the grand scale.

And meeting me in my storm, with open arms and an embrace—not a gut-punching meme that seeks to discredit my need, devalue my expression, and normalize an injustice.

When you are met with someone who opens up and seeks to be authentic and disclose their struggle, don’t tell them to sit quietly in chaos, please.  Don’t ask them to be happier with the injustice that swirls around them.  Act to improve their lot.  Strike out against injustice.  Send forth that ripple of hope.

And if you won’t do all those good things, at least stop sending gut punches.

 

Contribute to Christy’s fundraiser here if you wish to help lessen her storm’s raging.  Thank you!

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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.