Ours

Pale Simulacra

As the Veil thins

And the Wheel Turns,

May we open to the wisdom of those who came before.

Ancestors, known and unknown,

Who shaped our blood and bone,

Point us in a Direction

That we can follow

Or cast aside.

Still, their pull is undeniable

and, ultimately,

Ours.

Ask Already

Bipolar Mind

ψ

I forget that neuro-normals don’t always know how to bring crazy into a conversation.  I also know other folks with mental illness aren’t always as open as I am (i.e. in-your-face TMI) and have real reasons to keep their condition private.  So I grok that asking me how I am might be intimidating.  Old taboos, stigma, Midwestern Nice—for whatever reason, some folks are more comfortable asking other people how I am.

My sister told me about one mutual friend who said, “I know I’m not supposed to ask, but…”

Whaaaaa?

I guess it’s possible, during one of my Swampy Brain days, that I might have sprayed venom like a velociraptor if a human being invaded my space (which varies depending on the amount of Swamp).  Or muttered an F-word-laced answer to a direct question.  Or maybe just burst into tears.  It’s possible.

Gosh, I hope not.  I want people to ask after me—especially on those Everglades days.  When my hold on Reality is shakiest, I need to know people haven’t written me off or (horrors!) forgotten about me.  Kindness makes me cry, but I hope that isn’t a deterrent.

Come to think of it, inquiring directly about my state of mind could get pretty messy what with all the spittle, and weepage, and colorful expletives.  It might take someone with a HAZMAT suit and no sense of propriety.

I can live with second-hand concern.  I’m still touched by it.  And I apologize if a squirting, prehistoric potty-mouth responded to anyone’s approach.  I hope they try again.  I’ll use my words next time.

30 Days of Sandy Sue Altered: 4

A lot of the vintage photos I use are of my own family.  Here are a few of my favorites.

My Brother

Knucklehead

My Sister

(I made this for her when she was suffering from trigeminal neuralgia).

Broken Faces

Mom

Feisty One

Dad

Untested

Maybe my all-time favorite.

You’d have to have known my dad and his infamous “catch that and paint it red” line to truly appreciate this.  This is his father’s family.  Grandpa John in in the back with a little jewel dot (or gas bubble) above his head.

Prodigious Farters

Changing the Story

Flinch

When my nurse practitioner told me on Monday that she was treating me for pneumonia, I felt an inordinate amount of satisfaction.  Smug, even.  And at the same time, I was angry and resentful that my friends and family weren’t rallying around me.  When I stopped to look at all that head-ichor, it felt contradictory and very, very old.

We’ve been exploring ancestry in our UU study groups—how ancestors may differ from relatives, how we receive transmissions and transfer them on to the next generation, how we are given gifts and responsibilities.  With that in the back of my mind, I began to see my reactions to illness and support as a transmission.  They are as much traditions in my family as oyster stew on Christmas Eve.

wicked witchThe only time we could count on our mom giving us positive attention was when we were sick.  She touched us with care.  She looked at us.  It was acceptable to wake her up in the middle of the night to say, “Mom, I don’t feel good.”  It was not acceptable to be scared of the Wicked Witch on The Wizard of Oz.  I learned that at the age of three, sitting on Mom’s lap.  “If you’re going to be that way,” I remember her saying, “I’m turning off the TV.”  I got it: Emotions=Bad.  Illness=Good.

It was also a long-standing tradition to value illness that could be named, especially by a doctor, or was freakishly out of the ordinary.  So, my brother scored lots of points for the fast growth spurt he experienced as a teen when he woke up one morning unable to move.  The story of my dad carrying him in a fetal position to the car is legend in my family.  Same with the story of my brother accidentally dropping a pitchfork on my sister’s face and how the tine curved around her eye instead of puncturing it.  These are the fairy tales I heard as a child.

merthiolateGetting a cold wasn’t legendary, but having warts that disappeared before the doctor could inspect them smacked of magic and mystery—and worthiness.  I knew when I fell off my bike I’d better have gravel for Mom to pull out with tweezers or I wasn’t worthy of her time.  I learned how to wash a wound, dab on merthiolate and blow the sting away, wrangle a Band-aid without it sticking to itself.  I learned not to bother Mom with minor injuries.

But worthiness carried over into other areas of our life.  Recently, I talked to my brother about this.  It was no secret that he won the Most Worthy Award in our mom’s estimation.  He wrote to our parents every week from the time he left for college until Mom died last year.  He came home for Christmas every year, a nine hour drive from Bemidji, often through bad weather.  He kept the same job with the state of Minnesota his entire work-life and still works part-time, though he is officially retired.  He’s a little eccentric, which somehow made him more dear rather than worrisome.

I asked him why he did it.  Why did he write faithfully every week for all those years?

“Mom told me to,” he said.

testMy brother passed a test I failed long ago—obedience and demonstration of affection.  It was our responsibility to prove to our mom that we loved her, to do what we were told.  After my dad died, I think my sister understood unconsciously that a new test was in the wind.  She called our mom every day.  She helped her buy a new car and new furniture.  Of course she wanted to support Mom in her grief and confusion, but there was a frantic quality to it, a blurring of boundaries that sapped my sister’s emotional energy.  Eventually, my sister backed away enough to rebuild her boundaries.  And, of course, Mom felt abandoned.  And angry.

As I consider my family’s emotional legacy, I see all of it playing out in me.  I made light of my chest cold as just another annual event and went about being stoic and “taking care of it myself,” because it was nothing special.  At the same time, I silently tested my friends and family to see if they “cared enough” to call or offer help.  When they didn’t, I got angry and marked them as unworthy.

My care-giver, Leanne, visited yesterday, and she slapped me awake like a Zen master.  “How can they offer help if they don’t know you’re sick?”

Holy crap.  I’d turned into my mom, expecting people to read my mind and anticipate my needs.  I had carried forward a story that may have started generations ago.  What happened in my mom’s young life to make her so insecure about being seen and loved?  What happened to her mother to demand a boundary-less relationship with her youngest daughter?  I felt compassion and sorrow, imagining my mother and my grandmother trying to scratch affection out of a barren landscape.  Or, more accurately, what they perceived as barren through the lens of this family fairy tale.

Oz

So, I did a scary and fairy tale-contradictory thing yesterday.  I announced on FaceBook that I had pneumonia and would appreciate kind words and help.  The outpouring of love and people rushing to come to my aid knocked me senseless.

I’m well aware that being able to say pneumonia still carries a lot more brownie points in my mind than the less worthy chest cold.  Editing this old story will take time and patience.  But my hope is that the legacy stops here.  Part of my work as a point on the continuum of time and ancestry will be to pass on a different story of who we might be.  In that fairy tale, everyone is worthy.

Vocabulary Lesson

Ravishing Sight

Proud: Feeling pleasure or satisfaction over something regarded as highly honorable or creditable to oneself.  —Unabridged Random House Dictionary

A couple of weeks ago, I met the nurse practitioner who will be my new primary care provider (more on that weird encounter here).  She gave me many gifts—opportunities to practice mindfulness, chances to hold an open mind, occasions to strengthen my tolerance and my boundaries.  After speaking with her for ten minutes, she also said she was proud of me.

(Cue Crickets)

See, I have a bit of an issue with people claiming to be proud of me.  The use of the word proud or pride means they have some vested interest in me, that they, in some way, are responsible for or can take credit for who I am or what I’ve done.

A few people can legitimately make this claim:

  1. My Immediate Family.  Those who raised me, shaped my character, or built the original hurdles I learned to jump can actually see their own handiwork in who I am today.  They are allowed to be proud of what they’ve done (or not so proud, as the case may be).
  2. Close Friends.  The people who stuck with me through the best and worst, who gave council and butt-kickings, who lost sleep and traveled distance to help me can also claim pride in their efforts to keep me alive.
  3. My Therapists.  The ones who actually made a difference.  The ones who struggled with and for me.  The ones who went above and beyond professional expectations.  They should be proud of themselves because of my successes and the fact that I’m still alive and walking around.

That’s it.

Now, I’m aware that people use proud and pride incorrectly.  Not everyone is an English major or is gnat’s ass picky about language.  What they really mean to say is that they admire me.  They might even be in awe of me.  Or even just happy for me.  That’s lovely.  And appropriate.  Thank you.

To claim to be proud of me after knowing me for ten minutes undermines my ownership of my own experience.  It’s a form of condescension—a pat on the head.  It effectively puts me, as a person with mental illness, in a place of less than, lower than, weaker than.  It tries to shove me in a corner.

baby

That’s right.  Nobody.  And I don’t need Patrick Swayze to rescue me, either, because my world is round, Baby!  I know who I am, what I’ve accomplished, and what a freaking force of nature I’ve become.  All that’s needed is a little vocabulary lesson if this misusage flub happens again.  And it will.  Not just with my new PCP, but with anyone who feels so uncomfortable with my unusual life that they need to discredit it.

A gentle whack with my Unabridged Dictionary ought to do the trick.

The Road Less Traveled

This was originally posted in June of 2011, four months before my dad died.  Not surprisingly, the prayer I offered for him at the end of this piece was never answered.

I see a lot of myself in Dad.  He’s always been a Glass Half Empty kind of guy, his thoughts and opinions naturally traveling down the darkest highway.  A card-carrying pessimist, his words of wisdom to us kids punctured any hope we might have had.  If we complained about doing our chores, he would say, “There are a lot of things in this world you have to do whether you want to or not” or “Get used to it, life is hard.”

Since the time I was in high school, I’ve listened to him bemoan every change in his aging body, never at peace with the natural adjustments any adult male has to make, never able to reconcile himself to the thirty-five year old he thinks he still should be.

I understand this fantasy thinking.  I understand the draw of the past and refusing to live in the present.  I’ve traveled his dark highway and know all the shortcuts.  I’ve watched my dad sit at the Table of Life and accept only scraps, convinced that’s all that’s being served.  He prides himself on being fun-loving, but his jokes and teasing carry a sharp edge that has more to do with defense than humor.  My dad was never a teacher, never had the patience to explain, but I learned his road map well.

When I’m with my dad, I try to poke holes in his perception, counter the negativity with perspective, try to do for him what I must do for myself.  But after a lifetime of indulging his world-view without question, his defenses are solid.  At times I see him struggle to consider the possibility of an alternate route.  If I hammer hard enough, he pauses in his argument to say, “Is that so?”  But, it’s exhausting work, and I can’t keep it up.  And I can’t make him willing.

The desire to turn off the dark highway  comes from within.  It comes from noticing flickers of light on the side of the road, glimpses of intriguing pathways and crossroads.  It comes from taking a risk and swerving off the black pavement for once.  Then, doing it again.  And it takes willingness to ask for directions from people who keep different kinds of maps in their glove compartments.

Father’s Day is tomorrow.  My gift for Dad is a simple prayer—to get the chance to take a side road.  I pray he finds the strength to stand on a bright lane with grass waving green and high on either side, a glass half full in his hand.

Sometimes

Reteach Loveliness

My grandpa and his horse with a glass eye.

Prototype Redux

I’ve never reposted an old post.  I figure I either have something new to say or I don’t.  And if I don’t, then this platform stays quiet until I do.  But Leonard Nimoy died yesterday, and I can’t find new words.  This man/actor/character has been a part of me since Star Trek aired on September 8, 1966.  I was nine years old—impressionable, starving for attention, a little fan-girl waiting to happen.

So, I offer, again, the collage piece I made about him in 2011.  Prototype.  All the images used in this collage are original, pictures I saved from entertainment magazines as old as Star Trek’s first TV Guide cover in 1966.

tiny salute

Protopype

I’m excited to present this finished piece.  It carries so many layers of meaning for me.

As all fathers do, mine created the template for all subsequent relationships with the men in my life.

As a tween, I transfered my longing for attention and protection from my dad to Spock, the ultimate unavailable man.  In my fantasies, I found the secret pathway to Spock’s heart.  Of course he would never demonstrate his affection, never claim me as his, but I knew he would protect me.  It seemed more than I could ever ask for.

My affection for Leonard Nimoy is deep and abiding.  He was, after all, my first.

Intensive Care

Collage art, greeting card artSince July, I’ve been in a program called Intensive Psychiatric Rehabilitation.  It’s Medicaid-funded and designed to help those of us with “serious and persistent mental illness to achieve goals that improve success and satisfaction in living, learning, working and socializing.”

It’s like nothing I’ve ever experienced in any kind of health care service—thorough, gentle, involved, deep.  For these first six months, I’ve met with my IPR Facilitator (Aly) two to three times a week just gauging my motivation and willingness to go through the process—doing lots of assessments, looking at self-awareness and life satisfaction, and meeting in a small group to hear how others are doing the same.

I believe my participation in IPR is a big reason for my greater stability during the last half of 2014, but maybe not because of the actual work I do in the program.  I get to spend four to six hours a week with a caring professional, talking about my life and my illness, who gives me useful feedback.  Considering that I see my therapist weekly, that gives me up to seven hours a week of therapeutic support.

I can’t begin to explain how lovely that is, to have somewhere to go every several days a week where I feel safe, heard, challenged, and successful all at the same time.  I have felt parts of me relaxing that have been clenched for years.  The notion that I could be kinder and gentler to myself grew naturally from this place of safety and care.  The outrageous idea that everything about my life—the wild and warp-speed mood swings, the practical struggles with money and relationships, my weight, my compulsions, my delusions, my mistakes and mis-steps—could be accepted and given a place at my internal table became my new mantra.  “Yes, that, too.”

This increase in professional support prodded me to start searching in different ways for more natural support.  I found a wonderful, active community at the Des Moines Unitarian Church, signed-up for a class there in SoulCollage®, met some interesting people and sang.  I started reaching out to my old friends in Minnesota.  I joined Facebook, fer cripes sake.

World She InhabitsOver the last few weeks, my work in IPR has taken me on a new journey of discovery.  My focus in the program is on my Living Environment, to assess and eventually set a goal about where I live.  This could also include a “Staying” goal if my current home turns out to be best for me.  We looked at all the places I’ve ever lived, which ones I liked most and least and why.  Aly asked me to imagine my perfect space, perfect neighborhood, perfect part of the country—to dream big and with extravagance.  We’ve spent time tweezing out my values and preferences and laying them over my ideas about home.

One of the many assessment parameters Aly used was to imagine what the significant people in my life would say about my current living environment, about the idea of moving elsewhere, and what their concerns might be.  I try hard not to presume what others think about me, so I wasn’t sure.  But I thought in general they considered me successful  (This is an IPR term.  It means that you generally stay out of jail and the hospital, that you can perform self-care, do basic housekeeping, and partake in enjoyable activities in your home.  Luckily, I rock at being successful).

This exercise made me curious to know what my friends and family really thought, so I started asking them.  It’s always a little scary to ask people what they think of me.  They all carry memories that I’ve lost, things I’ve said in the past, events and experiences fried out of existence by ECT.  Plus, an outsider’s view of my often-times incomprehensible behavior can carry an emotional charge for them.  I’ve done a lot of weird and hurtful things in my bipolarness, and turning over those rocks can be deadly.  But, getting that outside perspective is valuable for someone with mental illness.  We get trapped in our own faulty musings.  Someone else’s reality can be shocking, but life-saving.

As it turned out, they do think I’m successful, but another theme started appearing.  As I’ve reached out to my friends in Minnesota, they all to a person have said, “We don’t know why you moved in the first place.  It never made sense to us.  This is your home.”  And even my sister, who orchestrated my exodus from Minneapolis, said, “You’ve worked hard, made friends and have a routine in Marshalltown, but Minnesota is home…”

My compulsive side would do something with this information.  I’m choosing to just add it to my IPR file along with all the other assessments and data.  It will be a while yet before I actually choose a goal in my Living Environment.  In the meantime, I want to keep practicing this kinder, gentler attitude.  I want to keep attending UU services on Sunday.  I want to schedule my next visit to Minneapolis and spend time with those people who still love me and remember me.  I want to spend time with the people here in Iowa who love and support me, too.  I want to keep an open mind, explore, evaluate.  I want to keep being successful.

Because, you know, I’m on an Adventure.

And…

Family 2014

I hope your family gatherings were a little less grumpy than mine.  (Splayed toes are a true indicator of fed-up-ness with holiday cheer.)

Wild Animal photography by Cheryl LaVille who risked life and limb.  Thank you, my friend.

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