Afraid of Hospitals

My brother Michael and me

     Today I got my first call for a substitute teaching assignment.  Even though I could really use the money after my dead broke summer, I had to turn it down.  Why?
      My brother needs me.  Last week the nursing home called to say my brother refused, literally kicking and screaming, to go to the hospital for a check up with the neurosurgeon.  The poor guy looks exhausted when I go to see him later that morning.
     So I explain to the nurses and the social worker that my brother is terrified of hospitals.  After three brain surgeries and 39 years of being subjected to long hospitalizations to test the latest psychotropic drugs, who wouldn't be? 
     I promise I will accompany him to his next doctor's appointment, warning them not to mention it's at the hospital.  Truthfully, I'm not sure I can get him to go.  My brother can be stubborn and not even the bribe of his favorite strawberry shake can get him to do something he doesn't want to do, like take a shower.
     When I arrive at the nursing home around 7 o'clock this morning, Michael is lying down fully clothed on his bed.  He gets up immediately when I call him, with a smile on his face, expecting his usual snack of a banana, chocolate pudding, and a can of pop.  Today I come empty-handed. 
     Still he follows me down to the dining room by the nurses' station for his breakfast of cereal, juice, eggs and toast.  He doesn't ask where we're going when we take the elevator down to the lobby, where a CNA is waiting for us.  I can tell she's nervous about how my brother's going to react this time, as she gestures for me to go ahead.  
     When Michael sees the medicar waiting outside, he freezes.  Seeing the raw fear in his eyes, I blink back tears.  Keeping my voice light and casual, I say, "It's okay, Michael.  I'm coming too.  C'mon, we'll be back in no time."
     I'm not sure what he will do as I walk towards the door.  After a moment's hesitation, he follows me.  Wheeling himself to the ramp at the back of the van, he allows the van driver to strap down his chair.  I climb up to sit in a seat close to him. 
     Although he doesn't say much, I notice that Michael is looking out the window at places he hasn't seen in months.  That's when I get the automated telephone call on my cell phone for a job, which I ignore.
     When we arrive at the hospital, I'm relieved that Michael doesn't cause a fuss.  He waits patiently for the doctor's assistant to come in to take his blood pressure and temperature, not the least bit interested in the paperwork the CNA has given me from the nursing home detailing his diagnoses and medications.  She stays outside in the waiting room while I go into the examining room with my brother.    
     Seated companionably beside me, Michael follows another associate's instructions to close his eyes and hold out both his arms.  Then he firmly squeezes the two middle fingers of both the doctor's hands and grasp his wrists.  When asked, he gets up and walks briefly.  
     While he answers the doctor's questions when prompted, Michael keeps his head down most of the time, waiting to get back to his own internal conversations.  I can always tell when he's hearing voices, because his lips move soundlessly and sometimes he laughs for no apparent reason.  He's learned not to talk about them, however, telling me once, "I don't hear any voices and I'm not going back to the hospital!"
     Finally, the neurosurgeon comes in.  He shakes Michael's hand, asking him how he's doing.  Michael looks straight at him and says, "Fine."
     After a few more questions about any residual pain or weakness on his right side, with Michael shaking his head in response, the doctor says everything seems fine, but he would like him to get a CT scan just to make sure.  When I ask if any more visits to the downtown hospital are necessary, he says no.  That's a relief. 
     So we wait for the scrip for the CT scan, then for the medicar to pick us up, getting us back to the nursing home in time for lunch.  Before I leave, my brother has one last request for me.  Can I get him a can of pop?  
     Of course I can.  I buy him a Pepsi on the first floor at the little candy store and bring it back up to him, promising I'll be back to see him in a couple of days.  Tomorrow I'm taking my mother to the doctor.
          
           
     
         

               

Summer Vacations to Remember

Last year at this time I was exploring southern Poland, immersing myself in the history of World War II and the Holocaust to heal old psychic wounds.  Despite my bad knee, I forced myself up and down hills, stairs, and over cobblestones in extreme heat and humidity.  I stayed in historic hotels, Lemko cottages, and even on the grounds of castle in places with names I cannot pronounce.  I ate pierogis and pizzas with white sauce and tangy ketchup in outdoor cafes and watched endless streams of people pass me by.  I waited along the side of the road for three hours late buses and dragged my suitcase up and down the stairs to trains before I learned that private taxi is the only efficient way to travel if you can't drive gear shift.  And I thought that was a challenge. 
    In summers past I've wandered the islands of Tahiti, bobbing along in salty turquoise water, and eating pineapples and fresh grilled Mahi Mahi by the beach.  I stayed in grass huts and pensions, feeding scraps to chickens and stray dogs, and searching for the perfect black pearl.  
    On the tiny island of Bimini in the Bahamas, I've attempted to swim with the dolphins, only succeeding in getting seasick on the boat.  Thank you to all the kind staff of Wildquest who looked after me.  I have never met such a group of empathetic people living in harmony.
      I did find the trail of Ernest Hemingway, who apparently loved go to big game fishing on this island off the coast of Fort Lauderdale, but I didn't find any traces of the lost sunken city of Atlantis in those clear blue waters.

     Then there was the summer spent in the hot springs of Ojo Caliente outside of Santa Fe and bathing in the mineral waters in a funky little spa town called Truth or Consequence in New Mexico.  I'll never forget getting my rental car stuck in a ditch taking the back roads through cattle country and being pulled out by a nice guy who was recently home from serving as a relief worker in Africa.  What are the chances of that!
     I've driven from Seattle to Mount Shasta in northern California, staying in a small town named Weed, in search for vestiges of ancient Lemurians.  All these journeys I've taken alone, relying on the kindness of strangers to help me get by.  They gave me the inspiration to write during the harsh winter months.

Mount Shasta

     This summer, however, I undertook a much more difficult journey, visiting hospitals and rehab centers, to explore the frailties of the human mind.  For a long time now, worrying about mental illness has been relegated to the dark period of my past.  Having long ago accepted my brother's mental illness, I was content with the occasional visit to the nursing home where he has lived for many years.  I was comfortable leaving my brother's care in my mother's capable hands.
     This recent crisis has forced me to become much more hands on in my brother's care and to see in excruciating detail how mental illness can rob you of your freedom and dignity.  I've held his hands when they were shaking so badly he couldn't hold a can of pop.  I've had to explain to the occupational and speech therapists and CNA's how to motivate him to participate in activities and to change his clothes.  I've had to point out the side effects of over-medication to his nurses and doctors and fight to have it reduced.
     Mostly I've tried to make him smile and to laugh, to distract him for just a moment from the frustrating realities of having no control over your life.  It's been frustrating and humbling.  I wish I could tell you that I handled it all graciously, with deep compassion and empathy, but that would be a lie.  I'm still a work in progress.  
     The only good thing that has come out of this hellish summer is that my brother and I have become much closer.  Almost losing him has made me realize the depths of my love for my older brother.
  

You Don't Choose Your Family

"You don't choose your family.  They are God's gift to you, as you are to them."                                                                         Desmond Tutu

      When I was very young, my mother says that a large television almost fell on top of me and Michael saved me from being crushed.  He shielded me with his own body, holding up this massive television set and yelling for help.  Of course, I don't remember this.  
     Now it's my turn to protect him.  Only two years apart, my older brother and I were always very competitive.  We both did well in school, although he excelled more in math while I preferred language arts.  He was an amazing piano player while I loved to sing and dance.  I'll never forget him playing "O Come All Ye Faithful" on the piano for me in the school Christmas pageant when I was in fifth grade.   
     Valedictorian of his elementary school graduating class, my brother set the bar very high for the rest of us.  I knew I could not compete with him athletically, since he was so good at baseball and basketball, and I avoided playing ping pong or board games with him.  He was known to throw the game across the room when he lost.  I preferred to read. 
    We went to single sex Catholic high schools right next door to each other, both earning scholarships to prestigious universities, his in accounting and mine in journalism, and then the competition abruptly ended.  
     When he developed schizophrenia and had to drop out of college, I won by default but I knew it was a hollow victory.  
     Although I have dedicated my life to trying to understand these complicated brain disorders, nothing could stop my brother's downward spiral from private university research hospitals to state hospitals to overcrowded nursing homes.  Most people cannot see his keen intelligence under his rough exterior and accumulated battle scars, but I can occasionally catch glimpses.
     Recently an occupational therapist asked me if Michael understood the directions she had given him on how to put different size pegs into the proper size holes.  Instead he was standing them up on the wooden board, which is actually a much more difficult task of fine motor skills.  
     "Oh, he understands you alright," I replied. "He's just bored and doesn't want to do it."
     He laughed as I challenged him to see who could get more pegs into the right size holes faster.  Our competition isn't over.
            
       
     
     

Beware of Tigers

This is not how I planned my summer.  I imagined daily trips to the health club, rewriting my novels, and spending leisure time with friends and family.  But from the moment we got the call that my brother had been rushed to the hospital for emergency brain surgery a month ago, my plans were hijacked.

     First there were the daily long drives downtown during open construction season to visit my brother.  Then the daily visits to the nursing home to coax, bribe, and cajole him to eat solid foods, cooperate with his therapy, and change his clothes.  Then my mother ends up in the hospital from worrying about my brother so now I'm visiting two sick patients each day, while working part-time, taking care of the cat, and nursing my own miserable summer cold.
    Of course I realize that it could all be much worse.  My brother and mother both survived and are getting stronger each day.  It's just a cold and I'll feel better in a few days.  So why don't I just stop my whinging and be thankful.  After all, it's not like my brother asks me to come see him.  Someone else could bring my mother her robe.  The world wouldn't end if I got off the treadmill for just one day.
     Yet how can I begrudge my brother an hour of my time when I see how he immediately straightens up in his wheelchair and smiles when he sees me?  How he laughs when I tease him, knowing that I truly understand him like no one else.  Who could resist that?
     And how could I leave my mother all alone in her hospital room, even if it is more elegant than most hotel rooms?  Now that she's in a country club rehab center with full  waitress service in their sunny dining room and more equipment than most fitness centers, I don't feel quite so guilty.
     Yesterday after visiting both of them, I dragged myself into work to tutor an exhausted 11-year-old girl fasting for Ramadan.  She did not want to be there anymore than I did.  Realizing that demanding that she do her reading exercises would result in a struggle, we talked for an hour about her concerns and fears.  Finally she decided to do her reading program all on her own while I worked with another student.
     Although there are 44 years between us, I realized that both of us are struggling with similar issues.  For that couple of hours I gave her the opportunity to make her own decisions and to take back some small control of her life.  I listened to her and answered her questions openly and honestly.  It was such a gift for both of us.
     Then I went home and slept for the rest of the night.  Summer isn't over yet.             

The Strongest Woman in the World

Mother and me with Grandma and Michael

     I used to believe my mother was the strongest person on the planet.  Maybe most children do.
     She ruled our household, doling out punishments and rewards seemingly arbitrarily. There was no point in appealing to a higher court for Dad was no match for Mom's strong will.  She made the rules and punishment was swift and severe for a first offense to deter any future challenges.
     Knowing that direct confrontation was futile, I retreated to the basement and waited patiently for my opportunity to escape.  "Don't tell Mother" was our family battle cry as we kept each others' secrets.  
     Finally my time came to go away to college.  My present for my 18th birthday was luggage.  I finagled my way onto campus as a boarder in a sorority house and as a tenant in a fraternity house during the summers.  After graduating college, I moved into apartments with roommates and boyfriends before moving to Ireland to build a new life.  I never planned to live at home again.
     No one was more surprised than me by the sudden urge to move back stateside eight years later.  Just as I had packed up everything to move overseas nine months after my first visit to Dublin, now I reversed the process and gave away everything once again to move home.
     I only planned to live at home for a couple of months, but somehow this has stretched to 15 years.  There are many reasons, of course--financial reverses, failed romances, and caring for my father at home when he developed Lewy Body Dementia.  After Dad died, it suited us both for me to stay on.
     So when did my mother change from this intimidating authority figure into this frail vulnerable woman afraid of losing control of her independence?  And if it could happen to the strongest person I know, then will it happen to me eventually?
     No wonder I can't sleep at night unable to breathe from the worst allergy attack I've had in years.  Just help me, Lord, get through this day, this hour, this minute, this second...  

Last One Standing

Cubby

     When I was young, my nightmares always ended with my escaping the creepy old haunted house but I could never manage to save my sister or brothers.  I remember one time I thought I had rescued my sister, only to have her head pop off like a porcelain doll.
     While I knew that these dreams were inspired by the B rated scary matinees I had watched that day, the feeling of being the last one standing haunted me.  I can still remember the guilt I felt at surviving when I couldn't save my brothers and sister.
     Then when they fell into the bottomless pit of mental illnesses and addictions one after the other, I struggled to understand why I had been spared.  Sure I had learned to avoid the obvious triggers of drugs and alcohol, but I had balanced upon the precipice myself quite a few times. 
     Now I can clearly see how I justified such bizarre actions as befriending cocaine addicts and holding onto mentally abusive relationships way too long, but back then my false sense of bravado carried me though from one crisis to the next.  When I look back on my days of going into risky clubs and waiting outside strange apartment buildings late at night while my friend scored his latest fix, I'm amazed I didn't end up on a missing poster.
     Yet somehow, no matter how much debt I put myself in trying to bail my friends out of the problems they constantly created, I always managed to bounce back.  At support groups, I was always the cautionary tale that made others feel their lives weren't so bad after all.
     Today I am battered but still standing.  Every day I visit my brother in the nursing home, bribing him with strawberry shakes to change his shirt and pants or to cooperate with his physical therapist.  Then I go to the hospital to visit my mother, who is recuperating from a TIA from all the stress of worrying about my brother.  Finally I come home to feed the cat and change his kitty litter, wondering how this became my life.  I really prefer dogs.

Privacy or Dignity?

Our family in happier times

Question:  Is it right to post details of my brother's recovery from brain surgery and about his mental illness on Facebook?  Am I invading his privacy and dignity?  Recently I did some soul searching to see if I was exploiting my brother's condition to gain sympathy or poking fun at his mental illness.
     Actually I admire my brother's wit.  Who else could come up with the term Congoleum juice for Cherry Coke or give himself the title of Pope President?  Finding humor in tragic situations has always been my family's coping mechanism. 
     Is it my place to tell his story, even if he has no idea what Facebook or the Internet is for that matter?  Maybe not, but I know my brother could care less what other people think of him.  He is much more concerned with his internal critics than the opinions of people in what we call the real world.  
     Nor is privacy a big concern for him.  He lives in a facility with more than 300 people, with only a thin curtain separating his bed from the next guy's.  He's oblivious to the disparaging looks of other people in restaurants or on the street.  Embarrassment is not in his emotional repertoire.  Sometimes I envy his ability to just be himself without worrying about the reactions of others.
     While my brother has the protective cloak of his own private world, my sister was all too aware of the indignity of being a mental patient.  The first time I took her to the psych hospital at her request, she packed all her best dresses in a suitcase, saying she wanted to go with dignity.  Of course we ended up taking the suitcase home with us as she traded her best dress for a hospital gown.
     The next time I saw my sister she had succumbed to the patient shuffle.  It was as if she had aged 20 years overnight and had lost all muscle tone in her arms.  Within two months, on April 27, 1989, my sister was gone.  There is no dignity in having a mental illness.

The Witness

      We all want to feel like we're the main characters in our own lives but in truth some of us are always relegated to the role of a supporting character.  The one who is all too aware of the train wreck ahead but unable to stop it.  If we're honest with ourselves, we must admit that we are jealous of the sick brother or sister who garners all the attention and of the addicts who are oblivious to the carnage they leave in their wake.
     We resent always being stuck picking up the pieces, afraid we will freeze when called upon to rise to the challenge of the inevitable next crisis.  We know we're being petty when we demand recognition for our own little victories while our mothers, fathers, brothers or sisters are falling apart so dramatically.  So we relegate our own needs and desires to the back story, wishing we had the courage to explode in such a spectacular fashion, wondering if anyone would be there to clean up our mess or would even notice.  Witnesses to the grand ironies of life, survivors of the emotional tsunamis of others, we are desperate to play the leading role for just once in our own lives, but afraid to risk jumping without a safety net.
     I have told these stories about my sibling's mental illnesses so many times, trying to keep alive the memories of lives cut short, to find some meaning in senseless self-sacrifice.  I once asked my version of the Higher Power why I was spared the mental illnesses that have ravaged my brothers and sister's lives.  I was told that I needed to understand how the mind disintegrates.  I forgot to ask why this was so important.  What is the point of understanding something you are powerless to change?
          

Code of Silence

Grandfather Guilfoyle

In my grandfather's day, people used to shut away their mentally ill relatives and never speak of them again.  It was considered shameful.  Families were afraid of being judged and shunned if anyone found out.  That's why my no one ever spoke about my Great-Uncle Martin's nervous breakdown in Ireland.   
     At first when my older brother became mentally ill, my mother wanted us all to keep the code of silence.  As if anyone looking at him couldn't immediately tell something was wrong.  Eventually I grew used to people staring at us in public places.  We only took him to certain restaurants where they knew him and tolerated his odd behavior.  We learned to eat quickly so we could leave if he became agitated, sometimes spending the entire meal in complete silence for fear of setting him off on one of his tirades.  Happier childhood memories were soon replaced with images of him throwing his plate across the room on Christmas day and punching a hole in the wall on Easter morning.
     Although I didn't buy into the family secrecy, my sister did and it warped her sense of identity.  Soon she was lying about everything--why she lived with family friends and inventing summer homes and vacations to fit in.  Numbing her pain with alcohol and bulimia, she had more and more to hide until her secrets ruled her life.
     The day before my sister died she spoke to me about being unable to speak up at her AA meetings.  She said if she tried to talk about everything that had happened she would explode.  She was so afraid of ending up schizophrenic like our brother she chose to leave this world rather than take that risk.

     My brother was unable to attend her funeral or the funerals of our younger brother or our father.  We told him about them, of course, but he had retreated so much into his own private world by then that he barely reacted.  After years of living in a long-term care facility, my brother had become isolated from his family and former friends.  He hadn't seen our nephew since he was a little boy and now he has four children of his own. 
     Wanting my brother to have a connection with his family, I arranged a meeting with his great-nieces and nephews a few years ago at a fast food restaurant.  Their ready acceptance of him just as he is gives me hope that the code of silence has finally been broken.

  

Congoleum Juice

Dad with Jackie, John, me and Michael

Congoleum juice is all Michael asks for in the hospital but Congoleum is a type of floor tile.  Eventually he admits that it's really Cherry Coke.  How the two are related you would need to be schizophrenic to comprehend.
     When my older brother Michael was first diagnosed at the age of 19, it was with chronic undifferentiated schizophrenia because of his profound thought disorder.  While it's true that Michael has the classic symptoms of hearing voices, delusional thinking and paranoia, these are common in most acute psychoses.  It was only after my younger brother John was diagnosed with bipolar disorder, then called manic depression, that the psychiatrists added lithium to Michael's drug regimen.  He was reclassified as having schizoaffective disorder.  
     At first the lithium caused a massive weight loss.  While most anti-psychotic drugs make you gain weight, lithium made Michael's weight plunge so dramatically that he had to be hospitalized for starvation and put on a  feeding tube.  Even with extra portions and liquid supplements, Michael still has difficulty maintaining the proper weight for his six foot frame.  
     I have enviously watched him shovel into his mouth a quarter-pound double cheeseburger, chili cheese dogs, and fries, knowing that he will go right back to his nursing home for dinner and never gain an ounce.  Still I don't envy his having to live in a facility with more than 400 people bouncing off each others' delusions, pestering him for money and cigarettes.  
     Perhaps living with so many other people doesn't bother him since he is used to sharing his mind with so many alter egos.  Sometimes he's Christopher Reeves, AKA Superman, AKA Clark Kent.  Then he's Jesus Christ on the cross, holding out his upturned palms as if we can see the stigmata.  Unfortunately his latest incarnation as Rocky Balboa has left him with black eyes and multiple bruises.  
     At least he no longer believes he's married to our mother and I'm his daughter!  Now he proudly announces to anyone who will listen that he's the Pope President so you need to do what he says.  Who could argue with the Pope President?
 

What If?

Dad helps Michael learn to walk

     What if it wasn't a Wednesday and the neighborhood kid who was supposed to walk Michael home from the bus didn't stay after school for CCD classes?
     What if my anemic mother had dragged me at four-years-old and my three-year-old brother down to meet him at the bus stop that day?
     What if the pregnant bus driver had stopped at the regular bus stop right next to to the crossing guard instead of letting him off across the street?
     What if the impatient driver had not zoomed around the bus and hit my six-year-old brother?
     If just one of those circumstances had changed, then perhaps my brother would have a different life today.  
     Perhaps he wouldn't have flown up into the air and landed on his head on the unforgiving pavement.  Perhaps he wouldn't have been in a coma for four days and almost died.  Perhaps he wouldn't have been taunted by Catholic school officials for his parents filing a lawsuit against the Archdiocese of Chicago to pay for his medical bills.  
     Perhaps he wouldn't have had those blackouts when he was 12 or developed schizophrenia at 19.  Perhaps he wouldn't have had that grand mal seizure and brain tumor years ago and almost died.  Perhaps he wouldn't be in the hospital right now recovering from yet another surgery to remove a blood clot from his brain.
     Maybe if he hadn't become mentally ill, my younger brother and sister wouldn't have turned to drugs and alcohol themselves, developing their own mental illnesses, and ending their lives way too soon.  Maybe Michael would have been able to complete his accounting program at DePaul University and become a CPA.  Maybe he would have continued playing Khachaturian's "Sabre Dance" on the piano or joined a rock band.  Maybe he would have gotten married and had children.  Maybe I wouldn't have to visit my family in a hospital or a nursing home or a cemetery.
     Who knows what could have been?  Right after my brother's accident, they enacted legislation requiring drivers to wait for stopped school buses.  What if they had passed this law sooner?  We'll never know.