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”.

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.