positive

Plans

/ christyterese / Leave a comment

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”.

Yesterday

/ christyterese / Leave a comment

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

/ christyterese / 1 Comment

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.