Plans

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

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

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

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

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

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

I think that would be a sad position to hold.

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

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

I am planning a wonderful future!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

With every little box marked “LIVE”.

Documented

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

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

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

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

Gaaaahhhhh!!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bring on the paperwork, world.

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

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

Diet

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

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

But then, I got sick.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Production

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

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

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

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

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

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

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

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

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

I do produce.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You are not the sum of your production.

You are a person.

And you are valuable.

Cancelled

I am scheduled for a mammogram later today.  I’ve spent about the last 2 hours debating with myself about whether I do or do not wish to reschedule that appointment.

I can make it.

But I don’t want to worry about it.

But I feel well enough.

No, I don’t feel well.

But I could push through it.

But my head hurts already, and I think I may be getting sick.

But maybe if I just wait a bit I will feel better.

Except I need to hop in the shower and wash off all of the lotions and deodorants and such from yesterday.

I don’t have the energy for that.

Right.  You don’t.

Okay, I will reschedule.

But it takes forever to get in again, and I have surgery coming up in a few weeks, and then I won’t be able to get out and do it.

 

This isn’t an event that has great significance.  I get a mammogram every year, and the past several years of having them done, plus multiple ultrasounds and an MRI, have left my doctors with some confidence that the abnormal mass in my left breast is not cancer.  So, it isn’t like I NEED to be there today.

But I feel like I am always cancelling things.

It is true.  It is really hard to know your boundaries with fibromyalgia.  My body used to tell me in real-time what it needed.  Now it can take hours, days, and even weeks for my body to express that I have overdone it, and that my muscles and joints and brain function are not going to cooperate with my plans for the day, or the week, or the rest of my life.

This disease cancels life.  Not just the annoying little appointments that we all feel like putting off, but the good and beautiful things too.  Time with friends, celebrating with family, going to events … they are all cancelled.

Recently I created a wish list on Amazon of things that I would love to have to make my life easier and to keep me functioning at a higher capacity. Even those needs had to be cancelled, because life throws curve balls and supports I usually depend on were removed, and my financial situation is dire. I’ve had to ask people to support my fundraiser instead and to offer money to pay the bills and keep me alive.

It isn’t really a bad thing to shift focus in that manner.  Obviously, I consider basic needs of tantamount importance, and I am more than grateful for anything and everything that is offered me.

But I feel like even my expectations for living have been cancelled.

And I mean living is the expectation, not that I expected to live with certain comforts.  I am afraid my life might be cancelled.

This is probably difficult for people to grasp.  And I don’t blame anyone for not understanding the depth of my suffering in this moment, or the challenges that I face, or the need that I experience.  I would not have been able to grasp any of that until the last few years happened, and disease became my life, in some sense.

And cancelling became the way I approach life.

I was watching a video of Brene Brown discussing trust the other day. I only got through half of it because I needed to get on the bus and get to yet another appointment (one I couldn’t easily reschedule).  But one of the key components of trust that she talks about in the video is reliability.  She posits that reliability is doing what you say “over and over and over”.

I am not reliable.

I say that I will do a thing, and then the thing is cancelled, or rescheduled, or abandoned because I cannot do it.  My body and my mind won’t let me do it, so it isn’t always my fault, or demonstrative of my personal character, that I cannot follow through on what I say I will do, but the fact remains—I cannot be reliable in the way Brene Brown suggests I must be to be trustworthy.

When I started to exhibit symptoms of fibromyalgia, I had no idea that I was exhibiting symptoms of fibromyalgia.  This is common.  It takes five to seven years on average for people with this disease to be properly diagnosed.  And because of that it is often difficult to even determine onset.  But when I look back several years, and when I talk with my daughter about our history together, I realize that I was already cancelling life as early as 2007.  She would ask to go to the pool, and I would say we can do that tomorrow.  But when tomorrow arrived I would claim that I didn’t feel well, or that I was too tired, and we wouldn’t swim.  She still resents me for cancelling all of those times.  She understands now that I was in the earliest stages of my illness at that time, and that I didn’t mean to be unreliable and to become someone whose word she could not trust, but she remembers the way that she felt let down all of those times, and all the excuses I made for not following through.  And that pains me, just as my physical body pains me—or maybe sometimes more.

I still cancel, and with much more frequency than I did in previous years.  My disease progressed as it went undiagnosed and untreated for those years.  It got worse when I moved to the Midwest from Arizona, and suddenly climate changes, lack of access to healthful organic foods, and less swimming were affecting my body without me being fully cognizant of the effects of these changes.  And by the time people were taking my pain and fatigue seriously, I was on the sofa for a year and a half.

I’ve fought my way back in many ways, and I spend far less time on the sofa at this point.  But the reason that I do much better at living with my illness is that I am better at setting boundaries and better and listening and anticipating my body’s reactions.  Even though it doesn’t tell me in real-time that it is suffering, I can plan more effectively to make certain that I don’t overwhelm myself.  Proactive scheduling, approaching life in terms of my own needs instead of the expectations of others, and being more aware of my illness and the ways it presents and affects me have helped me cancel less … in part because I try to do less.

But I still cancel.  Over and over and over, I cancel.

It is difficult not to apologize for cancelling.  It is difficult to accept it as a symptom of my illness and not as a mark of poor character.  It is hard to feel like I can be a good person, a good friend, a good partner, or a good mother when I cannot commit to things fully and cannot be reliable.

And I wish that there was some positive spin that I could add to the end of this post—some nugget of wisdom that brings us full circle and expresses the self-awareness and growth and determination that I so love to share.

There isn’t.

This is one thing I have not yet figured out.  I still don’t have a beautiful lesson from this experience. If there is a lesson at all, it might be that I am not defined by my symptoms, but that isn’t the way I feel.

Last night I was crying to my dad, as I was telling him about crying to my dear friend Luke the night before, and saying how upsetting it was to look back on my life, and to have knowledge of all the things I have overcome and all the ways I have survived, and to think now that my own body and the illness that plagues it is that which I am unable to overcome, and the thing I may not survive.  I know, in the logical sense, that my body is not killing me, but what I feel is that I won’t survive because of myself.

There isn’t a way to fight against yourself and win.

There may be a way to fight against your disease and win, but that is much easier when you are fighting a cancer, which you kill in order to save yourself, than it is when the thing that you are fighting is incorporated into your entire being.  My own synapses, my own cells, are hurting me.  I don’t have the luxury of separating out what harms me and what IS me.  They are one.

My disease becomes my life.  Hurting is my life.  Confusion is my life.  Cancelling is my life.

There isn’t a way around that fact.  There is only acceptance of that fact.  Or at least that is the way I currently view things.  And I would love to view them differently, but I don’t know how.

I might still go and have my mammogram today.  I might not.  But either way I will continue to struggle with myself over my boundaries and my unreliability and my inability to be as I wish I were—living without constantly thinking about breaking and ruining life.  Living without always considering dying.  Living without worrying that I won’t make it beyond this state, or that this is how it always will be.  Living without cancelling so much of my life.  Living with the constant challenge of seeking to accept life as it is while simultaneously wanting to improve upon my life.

I know it is a constant process, and I know that it will always be such, and I may never arrive at a destination in which I sit and feel like I have completely accepted myself and my way of being in the world.  And I think it is like that for everyone, the healthy and the sick alike.  But today, in this moment, all that seems to matter is that I have, once again, fought with myself over the desire to cancel and not cancel.

I suppose that is how I must approach this fight—moment by moment.  And I suppose that I will eventually start to recognize both the challenge of making it through an event and the cancelling of an event as good and helpful and right.  Because each time I power through, and each time I cancel to rest, I am making a decision to do the best that I can for myself.  And as long as I keep focusing on that—on what is best for my care and for my survival—I am likely choosing well.  Even if my choice makes me appear unreliable.

And, at the end of this post, I have made a decision.  I will reschedule my appointment and deal with the mammogram another day.  Today, my spirit, and my body, and my aching legs and head all need me to rest and to care for myself by cancelling.  Today, cancelling is care.  Today, cancelling is good.  And, at the very least, I can always claim that I am caring for myself over and over and over.

Edits

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

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

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

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

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

But I love this paper.

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

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

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

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

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

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

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

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

And they will come—eventually.

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

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

The Dangers of Being

Once in a while I sit and reflect.  Just be.  In the silence, alone, waiting, and living inside my own head. It is a different feeling, this reflection, because usually I am always thinking, in the most deliberate of ways, but without conscious effort.  My mind just doesn’t stop.  I’m constantly assessing—for threats, I assume, because of my PTSD, but also just weighing all the things and investigating all the things and trying to anticipate all the things.

There are times when I question whether this is the sign of a diseased mind, like the doctors who prescribed ADHD in my twenties believed, or like the literature on trauma indicates, or whether it is just a side-effect of being really, incredibly intelligent.  I think my mind is always working for reasons, and I don’t always want to push away all of that thinking to just sit and be.

But I need to just be.

Disease or intelligence aside, I do feel better and gain energy and increase clarity by spending time in reflection and in meditation.  It helps.  It calms and centers me.  I can literally feel myself be more connected to the ground with a strong foundation.  I can literally feel my heart opening to love and my chest lightening with the release of anything I might be struggling with.  It can be a beautiful experience.

The trouble is, that when I start to spend time in this grounded, open, lighter space, I start being more grounded and open and light.

And that might not sound like a problem initially, but let me explain the difficulties of this change.

I do what I love.  I don’t care about the approval of others as much.  I let things happen without interfering or controlling them.  I act on my desires.  I live life to the full.  I enjoy my life.

If you don’t see the problem above, then you must not have grown up under the circumstances I was raised within.  Because where I come from you do what you “should” and you care a LOT about the approval of others, and you interfere and control things all the time, and you don’t act on your desires, and you don’t live life to the full, and most don’t enjoy their lives. Who could enjoy life under such restraints?  (I think a lot of people in that area just feign enjoyment and then go home and drink themselves stupid or cry into their pillows.  I know that is usually my strategy when I even visit for a long time—drinking and crying usually happen.)

Now, I do wish to clarify that there are amazing and beautiful people in this area where I grew up.  Some are even aware and thoughtful.  Others still are loving and compassionate and non-judgmental.  But on the whole, the area is plagued by expectations that are never met, leaving people to judge and be judged continually.  And that isn’t for me.

But being—just being and not trying to meet those constant expectations—causes consequences for me.

It sometimes feels like I am worlds away from those people and that place.  Other times I feel swallowed up by my own expectations, which were adopted and enforced in the stead of the ones who did so in my youth.  But, for the most part, I am shedding the rules and regulations and all of the “shoulds” that were once commonplace.  The struggle that I face, then, is the disconnect between the freedom of my current life and the captivity of my earlier life.

Tonight I ate a cookie baked with cannabutter …the whole cookie, not just my usual few bites per hour to manage pain, but enough to get me feeling a little stoned… and then I considered a booty call, but decided against it.  I figure I will wait things out and see if the guy from the other night decides to come back for more.  Because the other night I had sex for the sake of sex.  And it was fun.  And I really liked it.  And I am absolutely up for more, but I don’t feel like making the ask.  Being pursued seems like it might be fun.  And there is nothing wrong with any of the things I said in this paragraph, but that is not how the people in the place where the expectations and judgments live will see it.  Their perspective allows my situation to be bad or sad or cause for “concern”.  It does not allow them to accept that I like having sex but don’t plan on getting married anytime soon.  It does not allow them to accept that I break the law to feel better and eat my weed cookies anyway.  It does not allow them to enjoy my life.

And their enjoyment of my life is not a thing for which I will argue.  My life isn’t meant for them to enjoy.  It is meant for me to live and enjoy.  But what I am arguing for is to have the freedom to live life from my own perspective, in my own experience, filled with my own truth and understanding, without it being tantamount to murderous crime sprees.

I’m a good person.  And I don’t say that because I do good things, but because I am a person.  I’ve not met a single person who didn’t have some good in them. (And I have met some pretty awful people.  I even married a pretty awful person. It is saying a lot that I can find good in even him.)  And that good doesn’t disappear because I break a conservative evangelical’s rules.  I know that is how many of the people in my history have seen people, however.  There is good and there is bad, in their view.  There isn’t anything in between and one cancels out the other, it would seem.  So, my pot consumption and sex while unmarried would make me bad (or sad, or misguided, or confused).  Really, it just makes me a good person who does what she wants and lives according to her own convictions and not the convictions of others.  I can listen to and understand your convictions, but I don’t need to make them mine.

Sometimes, just being, and doing what I want and what feels right to me, gets me into trouble with these others.  And that is the danger here—finding freedom in your own life only to be chastised by those not even in your life. (Being related to me doesn’t count as “in” my life, per se. You would need to talk to me more than once every five years for that to be the case.)  It is difficult to live between worlds.  Do I pretend?  Do I lie about what I believe and what I do?  Do I tell people only what I believe they want to hear?  Doing so would mean denying myself the freedom I spend the time to achieve, and being locked in a cage of expectations once more.  And pretending for too long leaves you lost—you forget who you are after a while.  But not doing so means having to field angry messages and argue for my freedom a ridiculous amount of time, or restricting people’s access to my writing and my opinions (aka, unfriending half of my Facebook “friends”).

Being is hard work.

And apparently it is also lonely work, as the list of people who accept me as I am grows ever shorter.

Ironic that “Just As I Am” is a hymn that I heard often growing up, now that most who sang along with it don’t follow it at all.  Maybe the divine accepts me as I am, but I haven’t met many evangelical Christians that would do the same.  And with every move I make away from traditional views of scripture and toward a divine concept that offers more hope than criticism and more love than judgment, I lose more friends.

I was recently accused of “just trying to cause fights” by expressing my views.  I don’t need fights caused.  My life has quite enough struggle on its own, and I am not looking to add more.  But I also don’t need to feel shamed and judged and hated for the beliefs I do hold, and the ways that I do live.  I often wonder why those who comment repeatedly on my Facebook posts think I am starting a fight, when they are perpetually commenting.  If they don’t want to argue about a point I have made, then they don’t need to object.  And when I refuse to engage their comments, some people get extremely agitated and accost me.  But I suppose I am considered the one at fault because I have the divergent viewpoint.

That word, “divergent”, just reminded me of the book series of the same title.  It turns out that divergence isn’t really all that terrible, and that the girl who seemed all wrong was actually “right”.  And it is a bit fun to believe that I am the lead character in this story.  It is fun to think about how it will feel to know that I am justified.  And I am justified not by the ones who now judge me, but in a much greater scheme and a much broader sense.  Because right or wrong, we all have the freedom to be.  And that being can look however we might choose for it to look.  I am not afraid of the choices I am making.  I am not ashamed of the choices I am making.  And I am not hiding from the choices I am making.

Trust me, I get the whole fucking consequences concept.  I’ve understood that concept since about age four, but it was beaten into my head (sometimes literally) later in life as well.  If my choices really aren’t the “best” or “smartest” or most “good”?  I don’t really care.  Because they are the ones I have made, and I made them for reasons—often well researched and scientifically proven reasons.

And you have the freedom to make your decisions too.  And you are subject to your own set of consequences.

I would never say that the only people who are right are the people who got pressed up against an appliance the other night with a hand around their throat and liked it and begged for more.  I would never say that the only people who are right are the ones who believe sexual purity is the mark of a good woman. (Actually, I would never believe those people were right in that particular instance, but let’s just imagine for a second that they could be.)  The point is, I get to make my choices, and you get to make yours.  And I rarely attack people for their choices … unless I am super hangry or in a lot of pain.  I might disagree with your ideas, but I don’t use ideas to harm people intentionally.  But I also don’t think my ideas are the measure of my worth.  Because, as I said earlier, I am a person.  And people have value because they are people, not because they hold the right set of beliefs or have the correct courses of action.  People have value because they are people.

I wanted to type that I often question how the world might look if we all let one another be, instead of focusing so much on what one should or should not do, but I don’t actually question that much anymore.  I don’t believe that many of the people I know will ever change the way they now live, and I have stopped expecting the same level of acceptance from others that I offer myself.  It has, after all, taken years and years for me to let go of expectations and accept myself as I am. Some days it is still a struggle for me.  I’m guessing it will be as difficult, or more difficult, for others to do the same.  But I also don’t question my desire to break ties with those who would wish I hate myself more again—and I understand they would be well-meaning and not trying to make me hate myself, but by judging my actions and beliefs constantly, that is exactly what they do.  They make me slip back into the self-hatred of my earlier years.  And I am refusing to go back to that place, if I can help it.

So, being, in my case, might mean being tied to only a handful of loving people who understand and accept who I am.  And it might mean refusing to engage with those who offer me shame and self-loathing in place of the freedom.  Being might be difficult in all these ways.

It is so worth it.

I have never been more satisfied with life, even though much of my life currently sucks.  But I have never let go and let life be mine in this way before.  I wish I would have.  Because being, and being me, are both fabulous.

To close, I suppose I would like to encourage you to be.  Just be.  Free from expectation and letting go of control and allowing your happiness to be of great importance and offering your life what it desires to be, instead of always trying to fit your life into someone else’s desire for what you ought be.  Find yourself, in the quiet meditation space, and leave the space where judgments and disappointments and all those other negative self-images are formed.  Let go and be.

And, if you don’t want to, fine.  It is your choice.  But I think you might enjoy who you are, once you start just being.  I know that I have.

Pills

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This morning I asked the dog, “Wouldn’t my mother be proud of me, swallowing up to 11 pills at once?”

Shockingly, he responded by turning his head to one side and looking at me with cuteness and confusion, wondering if I were asking him something he wanted to hear … he hasn’t mastered English language just yet.

Why, you may wonder, would that impress my mother or be a source of pride?  Swallowing isn’t usually a thing to be praised.  (My mind hit the gutter there … and now yours did, since I mentioned it, right? Apologies.)

Swallowing pills isn’t usually a thing to be praised.  (Better?)

But for me, it was a huge challenge for years to swallow pills.  I remember vividly my mom trying every possible trick she could for me to get a tiny little tablet into my system the day before procedures.  Putting it on my tongue and then having me drink didn’t work.  Cutting it smaller than its already tiny form didn’t help.  I think that the most effective, and the most disgusting, was the buying me donuts, having me chew up a bit of the donut, and then shoving the pill into the center of the chewed food before I swallowed it.  Donut holes became a semi-regular event in my life from the point when we discovered that trick.

But the thing that struck me this morning was not that my mom spent herself to the point of exhaustion and utter frustration in order to make certain I swallowed the pill and was appropriately prepped for procedures, and not that I have accomplished the task and perfected it in ways that would offer my mother pride, and lets me take only a moment to swallow my medications, but that I remembered vividly the processes of prepping and procedures for medical purposes.

It is strange what the brain holds and what it does not hold.

My mother’s last words to me were, “I really like your hair that way.”  And that was the only full sentence I had heard from her lips in many months.  Why that sentence got through, and nothing else, I cannot explain. Nobody can explain it.  But it is a sentence I appreciate.  It was fitting, since my mother’s approval was something I always strived for and rarely received, and her disapproval was often focused on my hair and its current color or style, that the last thing she said to me was that she approved of my hairstyle.

I don’t know that it was a sign or a message, but it definitely made me smile … after the initial shock of hearing my mom form a sentence and look me in the eye wore off.

What her brain lost and what it held was always a source for surprise and question and analysis and much laughter, but there weren’t really any answers as to the “why”.

What my brain lost and what it held is similar.

I vividly remember the process of getting a pill into my stomach, and I vividly remember almost every single invasive or upsetting or stressful medical procedure I endured as a child, and I always have.  But while I was cataloging every moment of the medical trauma, I was erasing every single moment of sexual trauma.  Why did my mind hold one and erase the other?  Why was one captured and one cast into some recess of the brain and locked there for years?

And my first instinct was to say that one was cause for shame and not the other, but that isn’t accurate.  I wet myself with regularity due to my body’s defect, and I was mocked mercilessly for that.  And after surgery, when I didn’t have those ‘accidents’ anymore, I was mocked in the locker room because of my scars.  There was a lot of shame tied to my medical issues. And maybe there was more shame associated with the sexual trauma, but I don’t think that one was without shame and the other filled with it.  There were aspects of shame tied to both, yet I held one in my conscious mind with great detail, and the other I forced away.

As someone diagnosed with Complex Post-Traumatic Stress Disorder, I am learning that the ways the brain forgets can be really great and amazing.  My brain shut out traumas to protect me.  And since the moment those memories returned I went into several years of meltdown, I know that my little, young self could not have coped with those things.  My 19-year-old self couldn’t cope with those things.  Some days my 41-year-old self cannot cope with those things, though I’m learning more and better skills to cope now than I ever have before.

I am also learning that my brain suffered a division when the trauma happened.  Parts of my brain stopped talking to one another, and they still can’t seem to get those synapses firing all the time.  I dissociate from time to time, blocking out things that are uncomfortable or that remind me of other things, or just breaking myself in two and living in conflict with my own thoughts and ideas.  I’m a big pile of contradiction and incoherence and cognitive dissonance.  And all of that is because my young self held some thoughts and blocked others.  And I had no control of what stayed and what went.

Eventually, both combined into one larger trauma.  Not having control of your body is bad in any sense.  But the cognition of not having control over what happened to my body in the medical sense and the dissociation of not having control over what happened to my body in the sexual abuse sense became tied in ways that I didn’t understand until recently.  And the way that tie became apparent is by wetting myself like I did when I was a child when in the company of my abuser … at age 39.   My brain made my body lose control, and potentially continues to do so.  My pelvic floor dysfunction is possibly psychological and possibly physical, but more than likely a combination of the two.

So, I am back to the start, in a sense.  But this time I am remembering all, and the medical and the sexual are one trauma, melded together in some strange ball of a loss of autonomy.  And now I lose even more, with PTSD and fibromyalgia having effects on my brain and body that I cannot control.  I can only cope.

But at least I can cope, some of the time.

At least I am at a place where I can address all the things, and know when I am dissociating, and see how the disconnects are affecting me, and learn how to start putting myself together once again.  At least I am in a place where the memories of both can be acknowledged, and the path that I took to today can be better understood, and the ways I act today and the things I now believe can be explained.

It is amazing what the brain holds and what it releases.  But even more amazing is that I am learning how I can choose what my brain holds and what it releases.  Meditation and mindfulness are showing me the way to control my reactions to thoughts, and mandalas are helping me integrate my mind, and therapy is letting me voice the feelings tied to events that I was before expected to keep secret, or to accept silently.  I get to hold things.  I get to release things.  I am regaining that lost autonomy.  And I am expressing it … loudly enough to piss a bunch of people off when I won’t comply with social norms and religious expectations.

I am screaming autonomy.

I am choosing, even though I can’t choose what happened or what will happen in my life and experience.  I am choosing how I act and react in the midst of what happened and will happen. I am no longer letting my brain do the filing without my input, and I am making certain to assess what I release and what I hold.

I likely have a 50% chance of ending up like my mom, with my mind slowly deteriorating and losing thoughts and memories and faces and, eventually, life.  And if I do have the gene for Alzheimer’s and I do lose bits of my brain to disease, it will be difficult.  But I don’t worry about that the way I once did, because I currently have better knowledge and control of my thinking than I ever have, and I no longer need to worry and catastrophize and create struggle inside my head.  I can accept and release.  Even this idea that I might lose my autonomy in some ways or someday is not a source of struggle, because I know that such disease won’t define me.

I define me.

And accepting the ways I can’t control my life and my future, instead of struggling against them is what I am trying to choose.  I want that to define me—the idea that I accept myself and my life in the moment, and that I can act and react in positive ways, even in the darkest of experiences.  That is my choice.

The thoughts I hold and the thoughts I release are mine. The perspective with which I view things is mine. The ways that I act and react are mine.  The traumas that happen to me, are not mine to hold.  Those belong to the ones that harm, not to the ones harmed by them.  And no amount of victim blaming is tolerated in my space any longer.  That I am letting go.

And I don’t know that being me, in the way that I choose to be, would make my mother proud.  There is probably a lot that she would challenge and dislike, if she were here to do so.  But that doesn’t matter.  Because I am not letting other people define me any longer.  I am not letting the events that happen around me or to me define me.  And having the pride of others, or the acceptance of others, is a bonus, if it happens, but it isn’t my goal anymore.  I no longer strive for anyone’s approval but my own.

And I am very proud of who I am.

 

 

 

 

Yesterday

Yesterday I did a thing that hasn’t been done in years:  I forgot to put my medication in my bag when I left the house.

Those who are close to me know that I take a ton of pills and I am taking them what seems like all the time.  I have five alarms set for medications, and in the middle of a conversation I will haul out my pill container and some water and take drugs, or I will stop walking and lean against a wall somewhere in the city to haul out my pill container and some water and take drugs, or I will haul out my pill container and attempt to create more saliva and swallow drugs without water because I forgot

My medication alarm just went off, so I stopped mid-sentence and went to find my pill container and a beverage and took some drugs.  I think you get the picture.

But yesterday, when the alarm went off on the bus, and I silenced it and opened up the zipper pouch on the front of my backpack to get out my pills, they weren’t there.

“No problem”, I think.  I have an emergency backup container in my bag, just in case I forget my medications.  And I unzip the bag and find the inside pocket where the emergency backup drugs are kept.  They aren’t there.

Moments later I realize that the girl across from me on the bus thinks I am a crazed lunatic, as I frantically zip and unzip and search and search and pull out toothbrush and wallet and keys and pens and all sorts of things while I dig for what must be there.  It has to be there.  I have to have pills!

As I see the look that girl is giving me, I slowly breathe in and out, focusing on the moment, and bring myself back to a state of calm.  I put all the things back in the bag, and I accept the horrifying idea that the meds are not with me, and I alight at the stop where I am meeting my friend for our monthly shopping event. He assists me with one big shopping trip each month, because it is very difficult to access fresh foods near my home, and carrying groceries on the bus is challenging and exhausting.  And when I say assists, I mean I point to things I need and he puts them in the cart for me, pushes the cart through the store for me, keeps track of the costs on the calculator so I don’t go over budget, puts all the groceries on the conveyor belt, loads the groceries into the car, drives me home, and carries all the groceries up the stairs and into the kitchen.  If he were religious he would be a saint.

He was a few minutes behind me in arriving at the store, so I started pushing an empty cart through the housewares section, where I knew there was little I could afford to purchase and wouldn’t likely need assistance.  I was basically browsing until he arrived.  And when he did, I told him, with a frightened look on my face, that I had done the dumbest thing ever, and not brought my pills.  In response he did all the normal shopping things for me, and made me sit while he loaded the car, and refused to let me carry anything heavier than some chips and bread up the stairs, because he knew my pain was increasing with every moment away from those drugs.  Did I mention he is saint-like?  He really is.

And he was right to make me sit and not let me overwhelm my body with the tasks it could not and should not attempt.  And he was right that the pain kept increasing by the minute.  It is the worst and most pain I have endured in a long time.  And since I usually live with pain that is probably about a 6 or 8 of 10 daily, that is saying something significant.

But there is another thing, besides the pain, that was significant.  As the pain increased, so did the knowledge that my pain without medication would always be that severe.  The knowledge that I am feeling ten times less pain with proper medication than I otherwise would experience kept entering my mind.  And then I thought about the difference in my life this year as opposed to last year around the same time.  I am SO much better than I was.  I have much less pain, and I have greater strength and range of motion than I had last year.  I have much stronger doses and more pills than before, which often annoys me, but those pills are staving off debilitating disease and helping me to feel more human and more active and more happy and more balanced than I was a year ago.  The contrast between Christy on drugs and Christy without drugs was so stark that it could not be overlooked.

In that moment, I knew how much worse my life could be—how much worse it was, not long ago.  And I became very thankful for those few hours without medication and the lessons they were teaching.

It is difficult, when your life includes chronic suffering, to keep a positive outlook all of the time. It is lonely, and painful, and depressing, and challenging, and anger inducing, and a great loss, and it just makes all of life seem tainted.  The greyness hangs over your every experience, like fog along the water.  You can walk through it, but it doesn’t lift.  The grey is always surrounding you.

But yesterday, I grasped the difference between the grey and the black—the haze instead of total darkness.  And I became grateful for the grey.

That isn’t meant to sound depressing or sad.  It is meant to express that whatever my situation may be, it could likely always be worse.  And that is a good thing for even those who are not suffering, or for those on the brink of death, to remember.  There is always someone experiencing life less comfortably than we are.  We always have something for which we can be grateful.

The same friend that assists me with my shopping gives me a very hard time about beginning to celebrate and decorate for Christmas long before Thanksgiving Day.  And I often tell him that I practice gratitude each day, so I don’t need a special day for it … and I love the heck out of Christmas, because it just makes me think of all the joy and generosity of the season.  But when I practice that gratitude every day it can become a rote practice of naming off things that are always there, and sometimes the depth of gratitude isn’t reached on all of those days.

Yesterday taught me that depth of gratitude.  It showed me how much better life is, even when it is a very difficult life, than I sometimes acknowledge.  It showed me that some pain is better than all the pain.  It let me see how far I have come, instead of focusing on how far I still have to travel on this journey.

It seems odd that pain would offer me joy.  But in some ways the pain I suffer is a gift—opening my eyes to what I might not see if I were flying through life to get to my job and my meetings and my kid’s soccer game.  Pain offers me opportunity to consider other’s sufferings with a broader perspective.  Pain gives me time to think about and to learn and to ponder what I otherwise might not.  Pain sends me the chance to ask for help and to accept the generosity of others, and to let go of the notions that pushing harder and trying harder and working harder will get you to whatever goals you might seek.  Pain puts me in a space where I cannot be in control, so I need to learn to release and to let be.  Pain heals my spirit in some ways, even while it breaks my body, and makes me angry, and causes me to struggle.

It is interesting that I use grey to describe the way that suffering lingers.  I was taught to think in black and white when I was younger.  There was good and there was bad.  Any sort of concept of middle ground was not introduced until I was much older.  And at times I wish that it were simple to see the difference between the good and the bad and to stick to one side or the other.  But life doesn’t work that way.

I am reminded of a bit of Harry Potter where Sirius tells Harry that we all have some dark and some light in us.  We aren’t just good or just bad, and there aren’t clear categories of black and white.  We are all a sort of mixture of elements, and some things and thoughts and actions about us are less desirable and some are more so, but none of us is completely positive or completely negative.  We are an assemblage of protons, neutrons, and electrons.  We have both positive and negative.  We are meant to be both.  And life is meant to be both.  And mixing white and black gives you grey.

My life is grey.

My choices are grey.  My words are grey.  My intentions are grey.  My feelings are grey.  My actions are grey.

Some of my life is exquisitely perfect, and some of it is as dark as dark can be.  I need to hold and honor and examine and express both dark and light.  We all must, in some sense.  We are all living in the grey.  It is inescapable.

Yesterday, I saw the light in what is dark.  Yesterday I remembered to view things from both the positive and the negative—and sometimes both simultaneously.

Yesterday I embraced the grey.

 

Can’t

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

And right now, I can’t.

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

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

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

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

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

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

Where does that leave me?

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

I never know.

So I can’t tell you.