Marcos and his brain illness

Man portrait

Man portrait (Photo credit: @Doug88888)

He had always been a small man with wizened lines, a moguled nose that sloped over a deep philtrum and two ears that flew like flags on the sides of his head.  Looking at Marcos has always been a study of human terrain.   For someone with so much activity and exchange with just being seen by others, it was an apparent contrast to how disconnected he remained emotionally.  Brain illness had harmed Marcos.  It was as if he had been scooped out in places.

Marcos and I had worked together for ten years in psychotropic and psychotherapeutic remedies with only partial treatment responses that curved up toward an imagined healthy baseline on currents of hope.  His improvements however, never reached where he would call himself, “well,” and too soon they drifted down despite our cumulative efforts.

About that time, I had returned from Duke University for an update in training on electroconvulsive therapy, (ECT,) and had just opened up a new outpatient ECT surgery treatment center.  When Marcos and I discussed this as a new option, (new for our living location,) he wanted it without contest.

The evidence for efficacy as compared with the side-effect profile in ECT is dramatic.  When I tell patients about it, ECT might sound too good.  However, it has been around for so long that it celebrates itself. Marcos wanted in.

It has been a year already since we started ECT together but I still remember the way he leaned back in his chair that day in my office, animated almost for a change.  His scrubber eye brows were like punctuation marks around his eyes.  “Yes.  I want it.”

Marcos has not been able to taper down ECT at this point in his treatment to less than one treatment every two weeks.  He and his wife argue for it.  We have tried many times to taper down but every time we do, his symptoms come back.  He and his wife ask me separately and together, “Why doctor?  What is the point of decreasing treatments?  I do not understand?  When they work so well and we are not having any problems from them, why are we trying to reduce them?”  So, for now, he maintains one ECT treatment every two weeks.

His wife tells me he is better than he was on their wedding day.  She has never known him to be doing this well and they both think he is closer to whatever that baseline is for brain health he has always thought he was never going to get.  More connected with her, their sex life is having a run.  More connected with their kids, everyone feels like he has become a giver and the kids grades are even getting better.  By taking, Marcos became more of a giver; taking time, courage, emotional energy, even a ride there and from ECT, Marcos took and then was able to give.

Marcos is reading everything he can get his hands on about ECT; personal biographies, scientific articles, he has become his own advocate.  He could not read before ECT.  His concentration was too poor.  Now, with improved focus and attention, he perceives his memory is better.  Marcos believes he is interesting because he is interested in himself.  He is more aware of how others see him and smiles back when he catches the looks he gets just by wearing that face.

ECT is not a cure, but it is a treatment option.  It leads to brain healing, quality of life and improved connections.

Questions:  Have you struggled with quality of life?  How do you describe quality of life?  Please tell us your story.

Self-Care Tip:  Consider changing treatment paradigms to improve brain health.

RELATED ARTICLES

Find Hope When You Otherwise Must Die – Depression

Jane Eyre

Image by madelinetosh via Flickr

Briggs was crying again.  His wife, who came with him to our first appointment, looked like a peeled fruit beside him.  She was undefended, giving her last layer of self without knowing what would be left.  Briggs was one case of serious depression, but his wife; she was heartbreaking.  Both of them in their own ways would not last long.

It is not unusual in a specialty clinic to work with people such as Briggs who have been around the treatment shops.  Then, finally, in Jane Eyre-style, they appear at my door in the company of death.  They have been through therapies, practitioners and churches, but disease resists treatment.  Everywhere they walk, it is as if Hades (or Neptune) were visiting.  Hope-blossoms wilt as they pass by and those of us who share space, feel like the ground is going to open up and suck us under.  It is not uncommon in specialty-care, to be told, “…I have no strength to go further.”  Like Jane Eyre, they plead, “I must die if….”  (By the way, Charlotte Bronte is the bomb.)

As the person on the other side of this exchange, I have worn down the rainbow of “specialty” options available to offer.  And what are they?

I’m going to write more about those options next, but my questions for you today are:

What has worked for you or your loved one?  Is there any treatment you think is too extreme to consider to get brain health?  Please tell me your story.

Self-Care Tip:  Find your specialty care.

Name Your Fear To Know You Are Free

She knew the Horned King‘s secret name.

His name?  … I never realized a name could be so powerful?

Yes….  Once you have courage to look upon evil, seeing it for what it is and naming it by its true name, it is powerless against you, and you can destroy it.

The Book of Three by Lloyd Alexander

Science Fair Wins Ribbons

Image by OakleyOriginals via Flickr

Mistakes and the mist of shame thicken about us and it is hard to hope.  As if each effort of our intended labor produced Seconds and Flops we must stand in our Besties beside what we have done to get a participant appreciation ribbon tagged onto our lapel.

And somehow standing there, the layer of sweat thick under too many clothes, we remember the secret name, it comes and we whisper.  We whisper it; our last courage still enough for that.  There is a moment of surprise, as if we and whatever pressed us down didn’t know we might still live.

We can see now that we are not alone; just there, in fact you are there with your own passed over table.  I remember you working nights on it, your tired eyes, a happiness in your muscles still.  In those days.

We can see that we are special for more than injury; we hear now.  We feel concern for more and taste newness that filled the space.  The secret name.

We won’t tell you or it wouldn’t be secret any more.  But now that we remember we are free.  Now that we have the knowing, we will keep the power, thank you.

There is power in a name.

We won’t forget what came after evil and will speak more readily into dark spaces, will wait less and fear less because we have already been there.  Going toward the pain like that.  What’s the worst that can happen when you name your fear?  It takes no more than a whisper to be strong.

Self-care Tip – Speak into your dark spaces the name of your fear.  Be a friend to yourself

Question – What reminds you that you are free despite the fears that tell you otherwise?  How is freedom your truth in life even when your senses tell you otherwise?  Please tell us your story.

Related Articles

Flaws You Love. Presence.

More on Life-ers.  (Those darn perdy dandelions.)

Taraxacum, seeds detail 2.jpg

Image via Wikipedia

I had an interesting comment a couple of days ago on the concept of Life-ers.

If you have a weed in your garden, you pull it.  If there’s something wrong in your life, you don’t fall in love with it.  You get to weeding.

I can see the point of this argument as I’m sure you can.  I can also see where I didn’t get my point across well, or else this argument wouldn’t as likely have been voiced this way.  The person who said it isn’t stupid and neither am I.  But how do we come together on this?  There are Life-ers that are both weeds to pull and weeds to just plain garden I reckon.

We here at FriendtoYourself.com, got one of the most practical life examples of a Life-er.  It is both one that can be weeded and one that can’t.  Please read it if you haven’t yet.  Emily said in response to blog-post, One Woman’s Struggle,

I related deeply to Kara’s experiences. …I have been a self-identified compulsive overeater (or binge eater) since I was a child. It has always loomed large (pun intended) in my life. I have successfully dieted and lost 30-40 pounds at a time, and then I’ve gained everything back — with interest. It has been my obsession and my bete noir.

Eight years ago, out of pure desperation, I went to a Overeaters Anonymous meeting. I didn’t necessarily like it at first, but I recognized my problem as an addiction. If you hold my experience up next to an alcoholic’s, there is no difference. I struggled a long time with the program, but today I am living what OA calls an abstinent life. My definition of abstinence is three reasonable meals a day with nothing in between. I am shrinking to a healthy body weight.

I have also developed my spiritual side and my relationship with my higher power (that I get to define) is what makes it possible to eat like a normal person. My obsession has been lifted, one day at a time. Like an alcoholic, this is not something I can do on my own.  This is supported by about 25 years of data.

I am experiencing freedom I couldn’t even imagine walking in the doors of my first meeting — freedom from fat, freedom from compulsion, openness to change and growth and a life that is no longer nearly as self-centered.

Sana, you asked if it helps to think of it as an addiction — for me, it’s not an analogy; it IS an addiction. I use the Big Book for the solution. My recovery is just like that in any other program.  And it’s the ONLY thing that made a difference — not just for me, but for the dozens of people I share OA with. I hope this is something health professionals will understand one day. OA is an underutilized tool, and I think that could change with better understanding and guidance.

Thank  you Emily for your story.  I haven’t been able to get you out of my mind.

Addictions is a weed we could more often agree is a Life-er.  That isn’t to say there aren’t those of us who think that they can be weeded and be done with, but the general consensus in medicine is that they are Life-ers.   However there are other Life-ers besides addictions.  Recurrent major depressive disorder, treatment resistant major depressive disorder, obsessive compulsive disorder, okay – a gazillion other medical illnesses that won’t respond to weed killer or a gloved garden-grip.  There are also non-medical Life-ers, such as poverty, natural or unnatural disaster, rooted social stigma and so forth.  We could even use the biopsychosocial model to catalogue them if we wanted.

One of the things that intuitively sits poorly about Life-ers in our culture and communities is the helplessness that can soil it.  However, we are not implying helplessness at all.  Just as this courageous Emily described, when we take care of ourselves, when we befriend ourselves, we take accountability for where we are now.  Our yards improve neighborhoods.

For the world out there who is scared to garden with us, I have this to say.  Get over yourselves.  What we are growing is worth the space we occupy and of high value.  You may never know it, but we are and we have bank to show for it.

Questions:  What is your response to those who call your Life-ers weeds to pull?  What are some examples of Life-ers you’ve fallen in love with and how did you?  Please tell us your story.

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.

Emotions and Behaviors Will Get Better As You Heal.

Punch to the Face

Image by Ninja M. via Flickr

Don’t worry.

When you hear that, don’t you think violent thoughts?  Or how about, “Calm down?”  Got to love that.  I have visuals of my back swing.  Sure.  You might call them hallucinations.  I’ve never actually hit someone but I have pulled into ready position.

Here’s the thing though.  After all this on-and-on about taking care of ourselves, I have found myself saying things that get awfully close and I’m looking out.  Pretty soon I’m afraid I’m going to get it.  (I’ve got my eye on you!  And you!)

Here’s what happened.  Augustina was wondering what to do about her best friend.  They had quarreled and then quarreled again.

Naming someone, “best-ie” sounds pubescent but Augustina was no child.  Her best-ie had been her chosen family (as Jackie Paulson reminded us yesterday)  since she was twelve, fat and leaked.  Kids were laughing.  Future Best-ie wasn’t.  That’s the kind of girl she was.  Safe; a light in a house that she had gone toward naturally and that had not been put out by Augustina’s misty self.  Wet face, stained pants, fat neck and pimples – Future Best-ie wasn’t laughing.  And that’s about all it took.  She was her friend.

Why had Augustina and Best-ie quarrelled these thirty-some years later?  This was am apparent mystery to Augustina.  You know those kind of mysteries, when they belong to only one person while everyone else with the answer key is looking on.  It was almost like she was standing there, twelve-years-old and bewildered.  This time though, Best-ie wasn’t on her side.  Or so she thought.

Truth is, Augustina had been mean.  She was not keeping dates, she argued easily and she was more self-absorbed than the color black.  It had been months now and then they quarreled.  Augustina missed all the prodrome, the warnings, the recommendations from family, other friends and including Best-ie to get insight and help.  To Augustina, this quarrel stood alone and she was being misused and misunderstood.

So what do we do?  Do we discuss Augustina’s behavior?  Do we explain her problems?  Maybe.  But only long enough to help her join our treatment team.  Once she’s in treatment, we wait.  We for reasons of self-preservation won’t say, “Don’t worry,” but we will come close.  Why?  Because we know that many of her problems as perceived by others and herself will disappear when her brain illness heals.  Do you believe that?  Where do you think her emotions and behaviors are coming from?

See blog post, There is Less Space Between Emotions And Science.

Questions:  When have you seen maltreatment from others that feels personal to you appear without provocation?  When have you seen someone you trusted change into someone who is mean, angry, selfish and reject you when they never did before?  Did you see the opposite happen when their brain illness was treated?  Please tell me your story.

Self-Care Tip – Calm down.  (Duck!  I see you and I’m outta here!)

Don’t Run Away. You Might Fall In Love With Your Flaws.

DSC03321

Empower yourself by going towards what scares you.  Take it to the table and be with it.  Get to know it and openly share company with it.

Opal was throwing up.  She threw up more when she gained weight or felt fat.  Throwing up didn’t help her lose weight.  It was just a tool she had to deal with it all.  Opal was told often not to worry about her weight.  Told, she looked fine and not to weigh herself.  No one said openly, “Opal, you’ve gained weight and you’re going to get other illnesses because of it if it keeps going.”  They were afraid saying anything like that would make her throw up.  Hm.

What do you say?

We remember the three things that help maintain long-term weight loss.  Well one of the main reasons they work is because they help keep us present with “the problem” or “fear” or “shame” or however we name it.  Our natural instinct is to go away from fear but this is another example of when we don’t get help following our instincts.

What empowers Opal is to get tools to contend with her struggle with obesity.  It is probably a life-er for her and oh-well!  We can love our flaws better if we stop running from them and grow our skills in living with them in a friendly way.

Get empowered with whatever you are afraid of in yourself.  If you can’t do what you need to do to be in the place of that fear, it may be that you have a medical illness keeping you from coping better.  It doesn’t mean you’ve failed.  Staying with your journey, even to taking medication, even to naming brain illness in your life is so courageous.  You become one of the great ones.  Heroic.  It is so much easier to disconnect and lose our opportunity to love our flaws.

Have you ever heard someone call their life-er, “my old friend?”  Maybe it is arthritis?  Or recurring cancer?  Maybe it is brain disease.  Some day, we will also name our own, “my old friend.”  And we, with Opal, will mean it.

Self-Care Tip – Empower yourself by your presence.

Questions:  How do you do what is friendly to yourself when your instincts tell you not to?  What has that done for you?  Please tell us your story.