SERMON ARCHIVE: April 27, 2008 at Northern Hills Fellowship

"Mommy, My Brain is Broken:
Loving and Living With Mental Illness"

by June Schlipf

            Secrets. Freedom.  Freedom from secrets.    “I wish you could know what it means to be me.” Living with mental illness can be lonely, frustrating, and terrifying.

            Listen to the heartrending cry of my teenage daughter Meg, as she struggles to cope with the major limitations her obsessive compulsive disorder has brought to her: my extremely bright daughter:  Mommy, my brain is broken. my highly creative daughter:  Mommy, my brain is broken. my strongly empathetic and compassionate daughter:  Mommy, my brain is broken.

            Her brain IS broken.  It  thrives on intellectual activity, and solves problems creatively; it shows a great ability to understand and care for other living things, but it is broken.

            There are lots of kinds of broken brains;  we give labels to many of them:  Mental retardation, autism, dyslexia, traumatic brain injury, Alzheimer’s.   In some cases, what we once might have called
“broken” brains, we now realize are just variations on normal, as is the case with some  “learning disabilities.”  But in other cases, the severity of limitation can lead many of us to cry with Meg:  my brain is broken.

            My brain isn’t working right.  It, too, is broken.  It won’t shut off the worry and fear responses.  Sometimes, It won’t let me believe my own senses, or my own integrity.  Many of you know me well enough to recognize the working parts of my brain:  I’m organized, articulate, rational, logical.  But the fear and anxiety can override all of that, sometimes without warning, more often in what have developed into predictable patterns.

            Here’s how it goes.    For ten minutes, I stare at the Cheerios box and the cereal in my bowl.  Is “Cheerios” really the name of a food?  Is “cereal” a word for a food?  Is “food” the right word for something to eat?  If the box has “Nutrition facts” on it, that means it’s something to eat, doesn’t it?   Does it really?  It says “Calories.”  That’s a measure of something in food – isn’t it?    It says “Cheerios,”  “cereal,” has “Nutrition facts,”  and it looks and smells right.  Am I sure?  Should I start eating?   No.  OK, start over.   Is “Cheerios” really the name of a food?....   About the third time through, frustration takes over.  Why can’t my brain behave?  I know I’m going over and over and over this, but my brain is broken.  There is nothing rational or logical about this, and I certainly don’t sound articulate. 

            This is the part of the obsessive compulsive disorder (OCD) that I call “doubting.”  I doubt my senses and my ability to recognize safe – or harmful – things around me. 

            Do you wonder that I no longer cook, when each separate ingredient, including water and seasoning, requires that lengthy and agonizing process of approval?  I don’t do potlucks, either.   What if I poisoned all of you?   Luckily, I have a wonderful husband, who not only pours me glasses of water, but also handles our simple potluck contributions.

            But we do have to eat, and that means dirty dishes.  How do we get them clean?  I certainly couldn’t use dishwasher detergent – it’s far too toxic, and I might somehow swallow some, or get it into our food (this worries me so much, that I can’t even bear for John to run the dishwasher).   I could use liquid soap, but how would I be sure it was soap and not some other more toxic liquid (something that might be used in cars, for instance...).  I get knots in my stomach, just thinking about it.   So I use hand soap bars, which I can usually believe are just what they are.  My brain doesn’t stop there, though.  More doubting:  Did I wash the whole thing?  Did I rinse all the soap off?  Was that really water I rinsed with?  Am I sure that was soap?  Did I rinse the bottom?  All around the edge?   Some people with OCD worry about germs – I worry about the toxic materials to clean them off. 

            Do you wonder that despite my strong desire to help the environment, I have finally started using paper plates on a regular basis?  Of course, I never use environmentally unfriendly (toxic) cleaners;  vinegar and baking soda do wonders.   So I try to pretend it balances out somehow.

            Other normally simple activities present their own stressful routines of fear and doubting:  Is that really shampoo I’m putting on my hair?  Is this liquid OK to use for clothes washing?  Did I use it safely?  It goes on and on.   This illness takes a large amount of my time.  Do you wonder that I seldom get around to cleaning my house?  Thank goodness for bare hardwood floors:  the piles of kitty fluff get blown into the corners (just don’t look closely).   The emotional energy needed to persist in doing the things which frighten me is enormous.  I collect quilt fabric, tend our glorious garden, and play lots of mindless computer solitaire games to recover from that effort.

            Mental illness can indeed be lonely, frustrating, and terrifying.  In my case, there is also the sense of loss that I imagine affects anyone with a newly developed disability.   I used to love to cook (all those wonderful Indian spices) , bake bread, and make pasta from scratch.  One year I baked and assembled about 3 dozen gingerbread houses for the RE classes to decorate. We occasionally  invited guests for dinner.  Now I struggle with that box of Cheerios.

            How did this happen?  Why did my brain go from relatively normal to “broken?”   Well, there is a genetic component; various types of mental peculiarities afflict members of my family.   But in my case, I believe there was a triggering event.  I don’t want to dwell on that, but it involved the safety of one of my children, and – surprise – a possibly poisonous plant.  This followed the ten earlier years of raising Bob and Artie, with their frequent surgeries and multiple severe disabilities.  What do you do when your son has had his third trip to the emergency room with a seizure which lasted a couple of hours, and left him unable to breathe?  When you ask the doctor what you can do to be sure it won’t happen again and cause him to die in his sleep, and the doctor says “Nothing” ?  Stress causes a lot of problems with brains, and in this case, I think my broken brain is suffering from something related to post-traumatic stress disorder.   After Bob died four years ago, I started having nightmares about babies or children I somehow forget about or neglect.  After this many years, I still have them.
           
            What I’m describing is the status quo after nearly 20 years of illness.  What I can’t bear to remember, is how debilitating and terrifying it was at its worst.  Instead, I will say how grateful I am that I can now walk down the street without fearing every green growing thing within sight.  That I can actually enter the kitchen.  That I can drive the car and fill it up with gas.   That I can shop at the grocery store, and walk past the cleaning aisle with food in my cart.  A few weeks ago, I even planted three poisonous plants (azaleas) without any help, and without panicking.  It’s wonderful – and the idea that that is wonderful, is dismaying .

            Now, back to Meg, the daughter my deep love cannot cure.  I can’t tell what her internal dialog is saying.  I just see the actions, and hear the terror, resentment, and frustration.  She, too, had a triggering event, and now has a severe fear of germs, medical facilities and medical personnel.  Her perfectionism has become extreme. These symptoms and the limits they place on her life have produced severe chronic depression.

            I remember the two-hour long showers, requiring me to observe and constantly reassure her that she had not “touched anything.”  The terror in her voice as she exclaimed “Don’t touch me.” or “Did I touch that?”  The difficulty of living in the same house, when she could not touch anything John or I had touched or might touch.    The heartbreak of hearing her decision that she would truly rather risk death than be taken to the hospital in an emergency.  The despair which led her to seriously consider suicide.

            She was home for two years after she graduated from high school, retreating from a world full of terrors.  We continued to try to find effective treatment for her.  Despite the encouraging ads you may hear, mental illness is not always easily treatable.  She tried a number of psychiatrists, who ranged from the clueless:  “If you continue to act out, you will have to face the consequences”, to the downright dangerous:  “Those [devastating] symptoms are not a side effect of this medication – so keep taking it.”

            Gradually, with the help of a wonderful psychologist who specializes in OCD, and a psychiatrist who was willing to listen to her and treat her as an adult, she began to improve.   She found that the idea of going to college was the one thing which could inspire her to make the tremendous effort it took to face a terrifying world full of germs.  At age 20, she set off as a freshman to a small liberal arts college.   I knew college was good for her, when I visited her a few weeks later, and found her sitting on the floor in her dorm hallway, talking with friends.

            College was good for her.  So why is this intellectually inquisitive, creative and thoughtful young woman now, after four and a half calendar years and about two years of college credit, sitting alone in her apartment, too depressed and anxious to go out? 

As she was trying to pick herself up, the college beat her back down.  Even a small liberal arts college has a bureaucracy, with accompanying rules and procedures which do not allow for special circumstances.  The “disabilities lady” does not advocate for disabled students;  she just passes along the rules.  Meg requested a change in the sequence of courses, so that the writing courses which were difficult because of her extreme perfectionism, would be moved from her freshman to sophomore year.  By denying this change, the college set her up for failure.  As the year went by, her failure in those humanities classes affected her confidence and ability to function in her other classes, and she failed more courses.  She was devastated.  But she kept on tryng.

At this college, fulltime coursework is the rule.  If you are too disabled to succeed full-time, and request permission to go part-time, your mother may end up writing these words to the college president:  “We do not understand how it is that not succeeding in your courses due to too large a course load, is reason to be denied permission to go part-time.”   

Think about it.  Do you understand it?

We got tangled up in a bureaucratic mess of well-intentioned procedures and requirements, that were inappropriate and often detrimental to Meg’s education.  A year ago, she finally collapsed under the weight, and took medical leave from the college, fully expecting to begin again in the fall.  Instead, she faced more bizarre bureaucratic actions.  As she was beginning classes, she was told by one college office that she could return to college only if she took nine or fewer credits, and by the other that she was required to go full time or not at all.  She was told that letting her go part time would cause a problem with their accreditation.  (The accrediting agency told me later that this was not true, if they were accommodating a disability.)  She was told that before she was allowed to return, she would have to work with a writing tutor, who would verify that her writing difficulties had been solved.  (Never mind that she knew very well how to write, had top scores on the SAT, and could have been a tutor herself in the writing lab.)  No amount of explanation would convince the “disabilities lady” that a writing tutor would not help.   During a lengthy phone conversation with Meg’s therapist, the “disabilities lady” refused to listen to anything the therapist said, even accusing her of being “unprofessional” because she talked to Meg instead of using some non-existent objective evaluation of Meg’s disability.

Am I sounding annoyed yet?  Angry, even?  You should hear Meg’s opinion of the situation.

Now - haven’t we all been up against bureaucratic nightmares of one kind or another? How often do we prevail?   How often do we just give up?  How can we expect someone disabled with a broken brain to keep fighting, as the bureaucratic decisions make the disability worse? 

Here is how our current phone conversations sometimes go.
            Meg:  I don’t feel well.
                  Mama:    Have you eaten?
            Meg:  I had some pizza a couple of days ago.  I don’t feel like eating.
                  Mama:    Do you have something with calories that you could drink?
            Meg:  I can’t drink.  I don’t have any clean glasses.
                  Mama:  Did you drink yesterday?
            Meg:  No
                   Mama:  Could you wash a glass?
            Meg:  Too hard.

Meg no longer uses her earlier phrase about her brain being broken.  Now she just says:  Life is hard.

Is there some better way for things to be handled?  Let me give you an alternative example.  Meg spent three of her high school years at a small (tiny, even) Quaker boarding school in Iowa.  This school truly was committed to providing an individualized and whole-person learning experience.  Staff and students lived on campus, shared farm and household chores and recreational time, as well as classes.   The “higher-ups” at Scattergood Friends School knew Meg well, and could give her the encouragement she needed.  When it became clear that writing the required 20-page senior research paper was not going to be possible due to her severe perfectionism, we all brainstormed a way for her to have success.   The school then agreed for her to present her research orally.  With one week left in her final semester, Meg read 1,000 pages from books relating to her subject, learned a lot, drew some interesting conclusions, took her oral exam, and passed.   Truly a successful learning experience.

What can we here at Northern Hills take from this lengthy story?   Most of us don’t run colleges, or treat people with mental illness.   But we do interact with many people in many situations, and as U.U.s, we affirm the inherent worth and dignity of every person.  We also affirm and promote  justice, equity and compassion in human relations.

  How do we get from where we are to a social system which truly honors each individual with a disability, and acknowledges that procedures and rules set up for the good of most, or for an institution as a whole, may need to be reworked in light of an individual’s need? 

How do we eliminate the stigma of mental illness that not only can prevent people from getting treatment, but also limits knowledge and compassion?   Without knowledge, it is easy for discrimination against people with mental illness to flourish, and for “disability ladies” to completely misunderstand the nature of the disabilities.

            I believe we have made a beginning this morning.  We have had a time together to speak from the heart, and to listen with the heart.  A story which might have been a secret has come out into the open, for the good, I hope, of all of us. 

            Let us continue to listen to each other, and to be brave enough to speak.  Some of us understand a great deal about our illness and can tell our stories; others are so debilitated that we do not recognize our own situation.    In both cases, let us do the best we can to understand, and to act with compassion.   Our Committee on Ministry, our Board, and our minister Rev. Bruce Russell-Jayne have shown us how we can do this.

Above all, let us work to make Northern Hills Fellowship a Safe Place, where those of us with broken brains can “come out” to those around us, and experience loving support.   Let us gather ourselves in community, and see what love can do.