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.

Advertisements

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.

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.

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.

In the Name of Love

I was doing a bit of reading last night, in an attempt to fill insomnia time with something that makes it seem less like insomnia and more like productivity or entertainment.  The book is one I am almost ashamed to be reading, because its pages are covered with philosophies of giving = getting, and those philosophies almost always include a measure of victim-blaming and exclude concepts of systemic or institutional factors and their influence upon one’s current situation.  So, I usually get annoyed with such philosophies quite quickly, and sometimes I even get really angry with these types of books—yelling at no person in particular about the ways that my bed was not made alone, so no, I don’t have to “lie in it” unless those who victimized me have to lie in a bed far worse. (The number of times I have been told that I made my own bed, and should now lie in it makes me shudder.)

What I gave to the universe was NOT equal to what I received.  Innocence and autonomy lost at a young age cannot be blamed on the innocent who do not choose their victimization.  Did I make some unsavory choices in my lifetime?  Absolutely.  But did I make them without any influence of childhood trauma?  No, I did not.

I gave the universe love and empathy and kindness and creativity and beauty.  It gave me a lot of terrible crap in return.

But, I kept reading the book with the really messed up philosophy of giving = getting, because the thing it kept saying I needed to give and receive was love.  And as I read, it occurred to me that at certain points and in particular situations, I have stopped giving love.  The reason I stopped giving it, was likely because I wasn’t seeing a return on my investment, and because I have complex PTSD and suffer from chronic pain and am an addict and have all these reasons that the world became a place that hurts you, and not one that loves in return.  So, my choice to be mistrusting and build walls and shove my earbuds in my ears and blast Kesha instead of listening to my seatmate on the bus is a valid one, considering all the aforementioned reasons.  But, it isn’t getting me what I want.  And, let’s face it, what I want is what every being on the planet wants:  LOVE.

The challenge for someone who has been so deeply wounded that the scars will never heal is to continue to offer love and trust and vulnerability, even after doing so created the conditions for your wounding to happen.  When you offer someone your trust, and they betray it, or when you offer your vulnerable self, and someone takes advantage of that and uses your openness to harm you, it makes it really difficult to keep offering up your heart and mind and body to another—hoping that by some miracle this time is different and that this offering of your heart doesn’t add brokenness upon brokenness.

In some ways, we should never expect victims to trust again.  In many situations, the one who has been wronged should never give pardon and should never offer another the chance to wrong them in a similar manner.  Why should they?

The answer, again, is love.

Love is the reason I give pardon for past offenses.  But, that hasn’t put me, in some automatic fashion, back into a space where I can receive love with ease.  Because I try very hard to protect myself from further injury.  And that protection requires shutting people out and keeping people at a distance and creating walls and not opening up too quickly.

A friend once told me that I was not vulnerable.   And I was shocked by that statement, because I have been candid about my struggles for many years.  I feel like I share readily with people.  And I do share my story, but I do not share myself.  I don’t put my heart where it can be harmed.  My story doesn’t need to tell about the ways I feel vulnerable today.  I can offer a history without opening myself to others.  And that was the distinction that my friend was seeking to make.  He wanted me to understand that I couldn’t be known and loved if I had an alligator-filled moat around my heart.

I’ve improved a bit at letting people into that space.  The drawbridge goes down for my dad, and for my friend Luke, and for my daughter.  But, as time passes and I read books with terrible philosophies that tell me I get what I give, I realize that there is a tiny crumb of truth to the chapter that tells me I am not receiving what I am not giving.  Because I cannot expect love and trust and vulnerability from another if I won’t offer it to them as well.  And maybe one of the challenges to opening up is that I want the other to do it first, but their wounded parts want me to open up first—we do a dance of waiting and hoping and not receiving because neither of us wants to open up a space where a sword strike might land.  We all wait to remove our armor until the other has removed theirs.  And that gets none of us any closer to the love and trust and vulnerability that is required to further the relationship (be that a friendship or a familial tie or a marriage or whatever).

Yesterday, I was talking with my dad and said that my website seemed aptly named when I started posting online.  I really thought that I was learning to be whole.  But now I am realizing that I instead need to accept that I am broken, and that I might continue to break, so I ought to have chosen a website named “accepting that I am broken”.  He and I both, as though it had been practiced, said at once “Maybe, accepting the broken is how you learn to be whole.”  And I believe that may be the crux of the matter.  I need to accept breaking as a part of offering love.  And I need to acknowledge that offering love first is the best and fastest way to connect to others and to receive love in return.

I will get a few jabs from the protections (or even weapons) of others in the process.  I may increase my scars.  But, I will also be in a position to encourage others to let down their defenses if I have already dropped mine.

So, “Vulnerability” goes on the list of things I am working to improve.  And the shameful book of giving love to get more of it will probably be read to completion in a first attempt at finding the vulnerable self hidden deep beneath my strength and intellect and independence and lack of eye contact and background noise-removing earbuds.  I won’t paint a target on my chest.  But I will try to lower my sword, at the very least.  And hopefully, that won’t injure too much, and I can move on to removing one more bit of protection and psychological isolation.

I anticipate that this process will take years.  I’m heavily guarded.  But, it is a step in the right direction, I am sure, so I am committed to heading down that path.

I know that honesty begets honesty.  I know that trust begets trust.  I know that openness begets openness.  I even wrote a paper on such connections in an undergraduate communications course.  But, for some reason (or for many valid and obvious reasons) I stopped believing that love begets love.  It does.  It doesn’t always and instantaneously, but it will eventually bring you love in return.

So, here is a start at being open:   I don’t have enough love in my life.  I’m deeply wounded, in ways I am afraid to express, because many people in my past have shut me out rather than deal with the depth and breadth of my pain.  All the times I have allowed that pain to surface and become evident, people rejected me, avoided me, or insinuated I was some form of “crazy”.  But, I am trying very hard not to let the response of those people be shaped in my mind as the normative response to pain.  I am trying very hard not to let others shame me for expressing my suffering.  I am cutting out of my life the people that are gangrenous and make my wounds deeper and more affecting.  But, to the rest of you, I am going to try to open myself up and let down defenses.

This blog might get uglier before it becomes more beautiful as a result.

No amount of good grammar can make what ails me seem like entertaining prose.  Some of it—much of it—is a horror story.  But, I’m going to start letting it be such, and not sugar-coating struggle in ways that I believed protected me from harm.  I can’t be protected from what was.  But I can look with hope at what is yet to come.  And I refuse to believe that my story is a tragedy.  There will be a happy ending, but before that happy end, I need to find my way to vulnerability, and unceasing love … an epic goal, so maybe my life is an epic tale.  I like that idea.  I think I shall embrace my life as an epic story, with a glorious end yet to be written.  In the end, as with most epic tales, the main character finds love and peace and good, so I will embrace those, and perhaps emulating them will actually bring them nearer.

I hope I haven’t just agreed to the terrible philosophies of giving = getting.  But, I will at least admit to believing that proximity to good brings about more good.  In the moments when all seems lost, there is a good guide, or a good friend to carry you forward, or some good to fight for after a rallying, inspiring speech.  I need to start finding ways to trust in the good.  I need to find ways to start believing in love, once more.  And one way to believe in it, is to give it.

So, here I stand, ready to give more love.  I’ll let you know what I get in return.

 

Into the Wild

I have this problem lately.   I mean, I always have one problem or another it seems, but this problem has become foremost in my mind.  I don’t know who I am or who to be.

That is exactly how I expressed it to my therapist yesterday.

I don’t know who I am or who to be.

It isn’t difficult for me to understand that statement as normal, given my circumstances.  I have PTSD, I am learning to cope with chronic pain, and I am looking constantly at the ways that my core beliefs have been shaped (or misshapen, perhaps) and the ways that my self was formed by others and not by my own desires.  It makes sense that I would feel a bit lost, from a “psychological assessment” perspective.

But I am not a psychologist.  I’m a person without an identity.

And please, no responses that say, “Christy, you are [inserted claim of a personality trait]!”  I don’t need descriptors of how I do or have behaved.  I need to find the core of myself.  I need to find my base—the place from which my actions and traits emanate.  And I need to find it on my own, to make certain it is mine.

I know that we are always influenced and none of us grows up in a vacuum.  I know that what I stand upon and stand for is shaped by all the experiences of my life.  I know that “no man is an island”.  But I also know that growing up disconnecting from myself, and dissociating, and directing energy toward pleasing others rather than feeling my feelings truly, and developing this dichotomous and inauthentic self as a result has left me reeling, and experiencing a strange distance from who I want to be—the person whom I would choose if some of those influences hadn’t been forced upon me.

So, how does one go about finding oneself?

I have no freaking clue.

But that is the journey I’m embarking upon—the finding of the authentic Christy. I hope she is as amazing as I imagine she might be.  I hope when I deconstruct the damaging and false core beliefs, that I appreciate the piece that is left.  I hope that I feel less shattered and broken at the end of this trek into the unknown landscapes of myself.  I hope I don’t get lost in a maze of crazy and never find my way back out.

Wish me luck.  Offer me grace.  Extend kindness and understanding.  Because wherever this road leads, I know that it is going to be bumpy as fuck—and the Christy you thought you knew might not be the one that emerges on the other side.

Hold on.  Here we go.

Into the wild.