Neurological Disorders

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Demanding Freedom and Other Oxymorons That Empower Our Self-Care

Désirée Nick at "Oxymoron" in Berlin...

Désirée Nick at "Oxymoron" in Berlin, 1999

I read today on bipoblogger’s blog,

I am trying so hard to keep my head wrapped around keeping a hold on this broken heart/life balance/bipolar thing.  It’s been complicated by stupid migraine headaches.  It’s hard to make sense of things and to pay attention.

Today while I was waiting for my laundry to dry, I began writing some deep thoughts, deep like I didn’t want to deal with them. I basically wrote a page of self-help advice.  I appreciate my stubbornness.

My answer:

This sounds like a woman of courage doing it, taking accountability for where she is at, afraid maybe but pressing on to start over any time she chooses, demanding her freedom to self-care.   Demanding freedom seems like an oxymoron but this is what is called for when we feel trapped.

I will add to this “answer” that self-care often seems like an oxymoron.  Such as using the brain (the same organ that is diseased) to figure out what it’s behaviors and emotions mean or everything starts and ends with Me (when we know that there was a beginning before Me) – we see the weaknesses and the conflict and we say yes.  I am an oxymoron.  I am good and bad.  I am healthy and ill.  I am growing and dying.  I am flawed but perfect.  I’m sure you have more.

Demanding freedom is a basic tenet of self-care.  We say that despite the limitations in our lives, in our decision-making, in our suffering or pleasures – despite all, I am free to do self-care.

Questions:  How have you managed to demand your freedom to self-care?  What oxymorons in your life are empowering you in your self-care?  Please tell us your story.

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Are You Empowered to Start Everything and End Everything With Me?

Yesterdays blog-post brought a few neighborly questions for us to follow-up with.

One is regarding emotions from bluebee.  Is jealousy medical?  Followed by, What part of emotion is under our control?  Indeed.

Second, Sarah quietly slipped the question under our door of how to respond to emotions and behaviors that come from brain illness.  How?  Indeed.

Third, Carl banged a little louder when asking, what keeps him in a relationship with someone who is maltreating him verses leaving?  Indeed.

There is a nice flow to these.  They are leading into the next and circle back.  Emotions and behaviors come from the brain, much which is out of our control and some of which is.  The choice to engage in the life of the ill is like any other choice.  Our own.  If it matters to us if the way the brain is working in the “other” is in their control or not, we can spend more time trying to sus that out.  I’m not sure myself when I get it good from someone mean, but it has become easier to take care of my junk rather than there’s.  For that, I will say a million thanks.  If I’m getting yelled at, I do the checks on myself – anxiety? fear? anger? fatigue? shaking? dizzy? tone of my voice? do I know what this person is yelling about? (most often it has nothing to do with Me), empathy? empowerment? You’ve told me that you are growing in similar refreshing ways.

Face Down w/Laundry and Gwen Stefani

Image by NCM3 via Flickr

I’ve seen this play out a little in my children.  My daughters and son are supposed to do the laundry every morning before they play.  I don’t know how many years now, but their arguments haven’t changed.

I’m doing this all by myself.  No one is helping me!

Mom!  He’s just laying on top of the clothes!  

Mom!  …

These questions above…;

  • where emotions and behaviors come from,
  • control over biological symptoms,
  • do I respond to others with brain illness
  • or do I walk away

These questions don’t mean much if we don’t find where our empowerment comes from.  Me.  Everything starts and ends with Me.

I’m ill for reasons I have nothing to do with, yet I will be accountable for myself and how I affect others.

I feel emotions I didn’t ask for, behaving ways that I am a spectator to rather than a whole person, yet I will do what I can to gain health.  In that, I have control.

I surrender what I don’t control to my Higher Power.  I take medication.  I exercise, guard my sleep hygiene and get regular sleep, eat responsibly, gather and engage community, attend therapy groups and/or individual, I try while at the same time I let go, I love my flaws as I love my perfections, I try to develop my natural genius, try as often as I can to pour any energies I have in that direction as I know I will heal faster, enjoy life more and be more successful at all my efforts when I do.

It reminds me of that saying, that if I have success, it is from standing on the shoulders of giant midgets.  We are all flawed.  We are all wonderful.  We are supported by others who also are full of flawed perfections.

Do I have control?  You bet.  …And no way.  Always, there are both.

Do I talk when someone is mistreating me? or mistreating themselves by neglecting their own self-care? by letting their illnesses shape their lives?  Do I walk away as that may be what my self-care demands.

Everything starts and ends with me.  There are a lot of stops along the way with other forces, but empowerment is mine.  Indeed.  That’s what I hope my kids will learn when doing the laundry.

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Your Pain is Not Special. It Is Normal.

Self-Care Tip #243 – See yourself as special rather than your pain and know that you will find your normal again.

What is your normal?

When we were kids, we all had a perspective of what normal was.  Let’s say it was “here.”  Let’s imagine we were lovely then, nurtured and emotionally bonded.  We struggled through peer conflicts, social anxiety and rivalry.  We wanted a bike.

Two Sisters

Image via Wikipedia

Then we got a little older.  Maybe our parents divorced.  Maybe, a sibling died.  Maybe we were abused or in an accident and damaged.  Damage changes normal.  What we never would have thought would be acceptable in our lives became acceptable.  We suffered.  We lived.  Life was indiscriminate and ignored our status.  We think there must be a mistake.

What is our normal at one point, filtered through remaining hopes, grew into regenerating fantasies, through real potential and it moved again.  We are older now and more suffering comes.

Where is our normal?  We survive our child, our own dear perfect boy, hanging from a tree.  Normal?  No dear God!  No!  And we continue to live.

Two years.  Two years are what it takes for our biology to catch up to the shock.  Two years are what it takes for us to begin to accept and realize that in this new normal we care again.  We choose it in fact.

People don’t remember his name or talk about him and we can’t remember his eyes.  We are ashamed and lose our breath from panic just trying to see them.  We want to bang our head because we know there is something wrong about feeling normal! Ever! Again! after that.  But we do.

Our normal mutates over financial ruin, abandonment and a growing healthy list of disfiguring illnesses.  We accept them and say yes please.  Live.  We want to live.  This is acceptable.  This is normal.  Our friends die.  Our memory.  We can’t find our teeth.  Our heart stops.  We die and the world finds normal.  The world chooses just like we did.

What we don’t think will ever be allowed to happen while we brush hair, clip our nails and microwave food, happens. We endure these changes.  We find normal again.

What is your normal?

My brother, Vance Johnson MD, is a physical medicine and rehabilitation specialist.  He said that during his residency, close to 100% of spinal cord injury paralysis survivors he worked with wanted to die after their injury.  Many of them would beg him to let them die.  They would cuss at him for keeping them alive.

I leaned very heavily on the studies and data during those times.  It was very hard.

Vance said that what kept him faithful to his task was knowing that close to 100% of them after two years would be glad they were kept alive.

Even the ones who were basically breathing through a straw and that’s all that moved on them; even they wanted to live.  These people found a new normal.

Where is our normal?  We will want it.  We will adapt.  Biology will catch up to our reality.

Remember that your pain is not special.  You are special.  Not your pain.  Pain is normal.

Question:  When this happened to you, how did normal find you despite the rubble?  How does this concept feel to you, that your pain is not special?  Does it make you angry or what?  Please tell me your story.

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What Moment Do You Have? This is Enough For Life.

orange toes in sand

Image by olive eyes via Flickr

Self-Care Tip # 224 – When you have something beautiful, stop and think about how you feel, and then shrink it into some words to remember for always.

The day is late and sand is in my ears and between my toes.  I don’t have much left on the clock before I should shower and sleep.

Earlier, while walking to the car with my daughter, I remembered Anne Hathaway‘s performance in the movie, “Love and Other Drugs,” based on Jamie Reidy‘s 2005 memoir, “Hard Sell: The Evolution of a Viagra Salesman.”  Hathaway plays the role of “Maggie,” who despite her progressive demise secondary to Parkinson’s Disease, says to her love,

This is how happy I am, in this moment right now, the way the light’s hitting that face of yours, there’s this little breeze coming…, it doesn’t matter if I have 10,000 more moments like this or just this one because…. Right now this moment.  I have this.

The sun had set and we were wet and barefoot trying to get back to the car before dusk faded out.  I asked my daughter that if she could put all the feelings inside her she was feeling right then, that moment, into a tight little ball, “What are the words to describe it?”

This isn’t easy for a seven year-old to do developmentally and poor girl, I torture her with these questions.  And for all her suffering, I couldn’t tell you what she said beyond, “happy.”  But I do remember thinking, “This moment.  This moment is enough.”

She was so beautiful, full up of goodness.  She belonged in the moment.  And me?  I was a part of it by God’s magic.  And now I have it.  Some bit of heaven already.

Questions – What moment(s) comes to mind that you have to remind you of what makes life worth living?  What do you have that is enough?  Please tell me your story.

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Who Cares What Your Diagnosis Is?

Wheelchair basketball at the 2008 Summer Paral...

Image via Wikipedia

Self-Care Tip #115 – If it’s not serving you well, don’t waste your time on it.  Be a friend to yourself.

Trixie Hidalgo, advocate to end violence in America, tells me that many of the people engaging in gang crimes tell her that they are put in their life positions (poor, stereotyped, impoverished) by the people who have the power, to keep those people in power and to keep them down.  They have some credible arguments we’ve shared before in history relating to oppression such as race, color, gender, money, or status.  Are these people victims?  Sure, why not.  But is that the point here?

The victims reminded me of a clinic I was in the other day.  I was working with Marcus and his father.  The father was torn about where to go to get his disabled son, Marcus, treatment.  Marcus was disabled with both brain illnesses and severe psychosocial stressors.  Currently we found Marcus, 2 years into treatment with me, and as of yet, father and mother (divorced without amicable terms) had yet to engage in treatment with me.  They wanted to know why Marcus was the way he was.  Father pointed at Mother and Mother pointed at Father.  They blamed other things as well, the schools not providing the right services, the medications for not working, his genes, and more.  Meanwhile, Marcus is tearing up his classroom and his own life.  He is barely functional socially.  Moody and volatile.  Anxious with physical symptoms.  He was having multiple medical work-ups going successively for various physical complaints.

Before I let them go, I told his parents, “Who cares what his diagnoses are?  It’s not about the diagnosis.”  The purpose of a diagnosis is to serve the patient.  The patient doesn’t serve the diagnosis.  Right now, Marcus was serving the quest for his diagnoses.  If all they can see is that, and they miss the fact that their son isn’t functioning, he’s depressed and anxious and violent and no one can stand to be around him, Marcus is worsening continually while they go on debating – they’ve missed “IT.”

They’ve missed it.  And so have we when we waste time counting up the offenses we’ve directly or indirectly suffered.  We miss it when we increase our injury by holding ourselves responsible to our history.  I asked Marcus’ parents what the point of what they were doing for Marcus was.  I ask the victims of America, what the point is when they point to history to answer for their present condition.  If it’s not serving you well, if it’s not doing something good for you, than what are you doing with it?  Do good things for yourself.

For the victims, for Marcus, and for Marcus’ parents, 1st make sure we weren’t missing something medical that was keeping them from having life quality.  You can’t give what you don’t have.  Then move on to the psychosocial issues and spiritual and so on.  What ever we ran into that missed our point, we’d walk past it together and on to something that served us well.

If you’d like to read more on this topic, read more in “It’s Time to Grow Up” and “The Whole World Becomes Blind.”

Question:  How have you managed to move past things that weren’t serving you well?  Please tell me your story.

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It Might Be Your Brain

How are you feeling? If it’s not good, it might not be “you.” It might be your brain.

When you don’t feel good, look at what’s happening inside.  Think about where feelings come from.  It’s hard to use your brain to think about your brain.  (Read more at “Basic but Effective.”)  But what to do?  Doctor Dolittle‘s pushmi-pullyu’s might have been able to tell us something of our missed opportunities by not having two heads and two brains.  (Unfortunately they’re extinct!)

Feeling bad, irritable, guilty, sad, like everything is flat, nervous, emotions that are out of proportion or inappropriate to the situation or trigger?  These feelings might have nothing to do with “you” and everything to do with your brain.  At some point if you get tired of beating yourself for the holes in your purse, if you don’t understand why things feel the way they do, if you want to rest, think medical.

Fred came in with his father, hiding himself in his shirt, in his father’s shirt, like a mouse who couldn’t find his hole.  The teacher from his special education class came in to help give history and told me about everyone’s efforts to bring him out.  Skinny, Fred preferred not to eat in front of people.  He started shaking in strange situations and climaxed into a tantrum if pushed to transition too quickly.  He was vulnerable to physical contact and avoided anyone touching him.  When he was really upset, he banged his head so hard that he had to wear a helmet.  When I asked his parents if they thought he was anxious, they said no.  No he wasn’t nervous his teacher said.  Hmm.

I told Fred’s parents.  I restated to Fred’s teacher.  I just said back to them the story they had just told me.  I told them about Fred and asked them what they thought.  After hearing Fred’s story again, did they think Fred might be behaving this way because he was suffering on the inside?  

We can’t give what we don’t have.  Asking Fred to come out and play so to speak, wasn’t something he had to give yet.

After treatment takes effect, then Fred will be able to pull his head out of his shirt and he will do it without being asked to.  It doesn’t do any good for Fred or anyone else to push him to do behavioral changes if he simply can’t.  Fred is not a pushmi-pullyu.  He has no spare brain to offer when the other is ill.

I told Fred’s father that I thought Fred was suffering inside.  Something in his father clicked.  He teared up and nodded and said “Yes!  He is suffering.”  That meant a lot to Dad.  To know that much about his son.  To know that what had confounded him for so long came from somewhere.  It had a name.  This thing might be treated.  Fred might suffer less.

Self-Care Tip #76 – If you don’t feel good, think about your brain.  Be a friend to yourself.

Question: Do you every feel like you expect yourself to give what you don’t have?  Please tell me your story.