Addiction and Schizophrenia in an American Family, Part 9 of 9

      ADDICTION AND SCHIZOPHRENIA IN AN AMERICAN FAMILY, Part 9 of 9

            (Adapted from “A NEW AMERICAN FAMILY: A Love Story,”      

             Published by University of Arizona Press, 2011.)                

Part 9    

     This story of our family’s trials with mental illness has played out in a larger society that has yet to come to grips with such problems.

     As the nation’s “drug czar” in the 1980’s, Bill Bennett invited me among others in a small group of college presidents to a private hearing in Washington, D.C., seeking counsel on strategies to combat drug use on college campuses. When we went around the table for testimony by individual presidents, every one of us independently characterized alcohol as the “drug of choice” on campus and the source of the greatest danger to individuals and institutions.  This was not what Mr. Bennett wanted to hear because his focus was understandably on illegal drugs, beginning with marijuana.  The meeting was not very productive.  Twenty-five years later we are not doing much better.

     The language we use to describe America’s drug problem is often confused and confusing, but words are important.  When we speak of “drugs” do we include all mind-altering substances, or merely those that are illegal?  Do we mean to include only substances that are addictive?  What about substances that seem to cause addiction for some individuals but not others?  Are we dealing with mental illness or just bad behavior?  Are we concerned about “drug abuse” or just “drug addiction”?  And what do we mean by the terms “abuse” and “addiction”?  Before we have any hope of solving a problem, we must learn how to talk about it in language we all understand.

     If we use the term “drug” to describe any mind-altering substance, we have included a very wide variety of chemicals, some of which are medically prescribed or generally acceptable for social and recreational use.  Alcohol is a drug by such a definition, but so is caffeine.  I am comfortable with such a broad use of the term, but I use it in this way with no stigma attached.  America’s drug problem is not drug use but drug abuse, particularly by people addicted to certain substances.

     When Mr. Bennett’s panel of college presidents described alcohol as the number-one problem on campus, they were reporting widespread and dangerous use of alcohol to the point of extreme drunkenness and associated violent and destructive behavior, such as rape or assault.  In general, they were reporting alcohol abuse, which only rarely was explained by yet-undiagnosed alcohol addiction.

     I have often wondered about some of my college buddies at Stanford who seemed even then to drink excessively.  Were they budding alcoholics?  I do know of one example at Lehigh of a very impressive student leader who told me in his sophomore year that he needed alcohol to handle the pressures of student life, and told me years later at an alumni affair that he was then a recovering alcoholic.  Alcoholism on campus can be veiled by the prevalence of hard drinkers who establish a false sense of what represents a “normal” amount of drinking.

     I use the term “drug addict” to describe someone who chronically feels compelled to use drugs even with the knowledge that such use is destructive to the user and to other people who should matter to the user, such as family and friends.  I see drug addiction as a chronic mental illness or brain malfunction that we do not yet understand in physiological terms and consequently cannot yet cure.  As research into brain function yields better understanding of mental illnesses in all their variety and complexity, I expect addiction to be better understood in this context.

     Alcohol seems to be a drug that can be used extensively by some people without addiction, but some people are rapidly addicted even in adolescence.

     Nicotine seems to be almost universal in its powers of addiction, but the negative consequences of tobacco addiction are generally delayed and therefore less immediately destructive to the user and others.  Nicotine addicts may also pay with their lives, but they pay later.

     Marijuana is potentially addictive by the definition used here, but it seems to be less powerful in its addictive grip than alcohol. 

     We are all sadly familiar with the litany of deadly drugs whose addicts populate our prisons and emergency rooms, drugs like heroin, crack cocaine, and methamphetamines. Their destructive influence on our society is disproportionate to the numbers of users because of associated criminal behavior.             

     Any frank discussion of addiction to alcohol or other drugs must first acknowledge the seriousness of this affliction and the extreme difficulty of overcoming such a pernicious chronic illness.  It would be wrong, however, to end in despair.  Although programs for recovery fail to achieve permanent success more often than they succeed, it is important to the prospects of recovery that the family and friends of the addict never abandon their love and never give up the hope of recovery that keeps the possibility alive until death intervenes.

     Pat and I never gave up on our kids, even as addictions early in their adult lives made it easier to just walk away.  Tough love is sometimes the necessary alternative to enabling the addictions of family members, but it is love nonetheless.  Pat and I managed to preserve our loving relationships with three children who battled through alcohol and drug addiction as young adults.  Two of the three fought their way to recovery.  John died at thirty-three, still in the bosom of his family.

Peter Likins        

          

  

          

    

      

      

Addiction and Schizophrenia in an American Family, Part 8 of 9

 ADDICTION AND SCHIZOPHRENIA IN AN AMERICAN FAMILY, Part 8 of 9

            (Adapted from “A NEW AMERICAN FAMILY: A Love Story,”      

             Published by University of Arizona Press, 2011.)                

 Part 8   

     In the late spring of 2002 John reported that the psychiatrist he was then seeing had agreed to reduce his medication dosage, which gave us pause.  It was not long before Pat’s eagle eye detected changes in John’s behavior.  He was sliding out of control again.

     On July 19, 2002, John died in his bed, his system taxed beyond capacity by an unpredictably lethal mixture of prescription medicine and street drugs.  He was thirty-three years old.

     It is impossible to describe the grief of a parent confronting the death of a child of any age, except to others who have faced that loss.  It seems contrary to the laws of nature, and therefore unreal.  Pat and I needed to see his still body, drained of all the energy that had created around him a special aura.  We had to touch his once-powerful hands and kiss his cold forehead before his death was real to us.

     At his memorial service, Pat and I both spoke about our son, singing his praises and lamenting the tragedy of his fall from a life of such vitality and promise.  We asked for greater understanding of mental illness, whether it had a medical name like schizophrenia or a common name like drug addiction.  We expressed the hope and the belief that collaborative research by physicians and neuroscientists will someday deepen our understanding of the malfunctions of the brain and lead to improved treatment of many forms of mental illness.  Until that day comes, we prayed for compassion for our son.

(To be continued in a subsequent blog.)

Addiction and Schizophrenia in an American Family, Part 7 of 9

 ADDICTION AND SCHIZOPHRENIA IN AN AMERICAN FAMILY, Part 7 of 9

            (Adapted from “A NEW AMERICAN FAMILY: A Love Story,”      

             Published by University of Arizona Press, 2011.)                

 Part 7         

     One can easily get the impression from the media that schizophrenics are dangerous people who hear voices commanding them to do evil things beyond their control.  There may be such people, but John was not one of them.  When not properly medicated John was inclined to withdraw into himself and become extremely passive.  Before the onset of his schizophrenia, John was a vigorous athlete in sports that were inherently violent and he was probably more active sexually than most boys his age.  As a schizophrenic John was quiet, slow-moving, and uninterested in sex.  When he was on the streets and out of touch, he was in a dangerous environment, but our greatest fear was that John would curl up in a culvert somewhere and die of dehydration and starvation.  That fear was not ill-founded.

     One of several California rehabs John entered before his schizophrenia diagnosis was run by Hispanic addicts motivated by religious convictions.  Pat and I visited John there and we were grateful to the good people running that house.  At some point they called our home in Pennsylvania and reported that John had stopped eating, drinking, and talking to others.  I was not at home, and Pat took the call.  She told them to pick him up and take him to the hospital emergency ward, knowing that he was too weak to resist.  In the hospital John was fed intravenously to keep him alive, but when Pat called, the nurse told her that John was comatose and not responding to any stimuli.  Pat insisted that the nurse put the phone to John’s ear, and he cried when he heard his mother’s voice.  So he came home again.

     The house rules were clear to all:  If you use drugs you cannot live with your parents.  As long as John stayed on his medications for schizophrenia, he was able to stay drug free.  But when he decided that he didn’t need to continue his therapy or he objected to the side effects of his medications and abandoned them, he was likely to accept a beer or two and soon slip down the dangerous path to crack cocaine or whatever he found available.

     On one such relapse, in 1999 as I recall, John was on the streets of Riverside after leaving his rehab prematurely, lost to Pat and me for some months.  One Saturday afternoon in the spring I received in Tucson a call from John, begging for help and promising to stay clean. I asked John where he could be found in Riverside, but he was unable to answer. “I don’t know,” he said.  He told me that he was at a public pay phone on a utility pole in the middle of a block, but he was afraid to leave the phone to walk to the corner to read the street signs.  He said he would wait for me.

     I was on a plane within the hour, determined to find my son somewhere in Riverside.  I landed at the airport in nearby Ontario, rented a car, and drove to Riverside.  After wandering aimlessly for a time, I asked local police where the street people lived and walked among them looking for John.  I searched through the night with no success, finally taking a room for a few hours.  I had found a public phone on a utility pole and I planned to go back there by daylight.

     The next morning was Easter Sunday and I had hopes for a miracle, but I was disappointed.  John was not at the pole, nor anywhere to be found.  I called Pat and we decided that I should take the return flight home that I had scheduled, giving up on my fruitless search.  I drove back to the Ontario Airport, returned the rental car, and proceeded to my gate, only to discover that California had switched to daylight savings time and my plane had already gone.

     I was, after all, a university president, so I had a briefcase full of work to fill in the hours before the next flight to Tucson.  While I was waiting at the airport, Pat called and reported excitedly that John was on the other phone to the family home, back at that same pay phone in Riverside.  I rented another car and found John still hanging on to that phone, incoherent and barely able to stand, but grateful to be rescued.  I helped him into the car and raced back to the airport, where I needed a wheelchair to get him to the gate.  It is surprising to me now that he was accepted for the flight with no identification, dirty, heavily bearded, and muttering like a wild man.  I got him back to Tucson and took him directly to University Medical Center, where he responded to treatment very well.

     Safely back on his medication for schizophrenia, John showed remarkable resilience, bouncing back to nearly normal.  He completed two courses successfully at Pima Community College, moved into his own apartment and began the journey to a new life.

(To be continued in subsequent blogs.)

Addiction and Schizophrenia in an American Family, Part 6 of 9

 ADDICTION AND SCHIZOPHRENIA IN AN AMERICAN FAMILY, Part 6 of 9

            (Adapted from “A NEW AMERICAN FAMILY: A Love Story,”      

             Published by University of Arizona Press, 2011.)                

Part 6    

     Because schizophrenia is medically treatable and drug addiction currently is not only not treatable but also essentially illegal, parents might prefer schizophrenia to drug addiction in their children. On the other hand, schizophrenia is presently incurable and drug addiction offers the hope of sustained recovery, however unpredictably.  Which curse should parents prefer for their children?  The only certain answer is that either is preferable to both together.

     For the patient, however, the preference is clear.  John felt the stigma of a recognized mental illness more acutely than he felt the societal disapproval of his drug abuse.  He had a hard time accepting his drug addiction as a permanent condition, but that was much easier for him than admitting that he was “crazy” and would always be so.

     John described in detail the side effects of his medication, sometimes in lament and sometimes in good humor.  He asked if we remembered the way the patients walked in the movie “One Flew Over the Cuckoo’s Nest.”  “That’s called the Haldol shuffle” by the psychiatric patients in the hospital John told us, conveying not only a vivid illustration of this side effect of that drug but revealing also a remarkable degree of self-awareness by the patients.

     The dual-diagnosis patient is constantly dealing with a Catch-22; the solution to his schizophrenia is to use mind-altering drugs, and this is precisely what he must avoid as a drug addict.  His best prospect for help with schizophrenia is his psychiatrist, but the doctor is of little or no value in dealing with his addiction.  His best friend in dealing with addiction is the recovering addict, but the men in a tough rehab like Hogar Crea absolutely forbid the use of mind-altering drugs, even as medication.

     The schizophrenia diagnosis may have helped Pat and me as John’s parents to realize that his drug use was driven initially by his self-medication, but that realization did not alter the pattern of John’s drug use, which continued intermittently for fifteen years. As John explained to me during a lucid interval of proper medication and abstinence from street drugs, he was attracted to the forbidden drugs not by the desire to feel high but by the need to control pain.

(To be continued in subsequent blogs.)

Peter Likins

  

Addiction and Schizophrenia in an American Family, Part 5 of 9

            (Adapted from “A NEW AMERICAN FAMILY: A Love Story,”      

             Published by University of Arizona Press, 2011.)                

  Part 5  

     Over the years of his struggles with addiction, John was typically clean and sober for several months and then in a period of crisis with drugs for several weeks, ending up again in treatment and continuing the cycle.  Often the crises ended with a call home for help. One such call came from John in a pay phone booth in Riverside, California, asking me to direct the Riverside police to save him from the people who were trying to kill him.  Knowing that any drug addict on the streets was necessarily involved with dangerous people, we didn’t dismiss John’s claim that his life was in danger.  Drug dealers use addicts to transport both drugs and money to minimize their risk with the police, and John was entirely capable of stealing either valuable to feed his addiction, knowing that the dealer had to use fear to enforce the discipline of his transporters.  As we spoke, however, we realized that John was delusional.  He could see the police station across the intersection from his phone booth, but he was afraid to open the door and race across the street to safety.  He wanted me to call the police and have them go get him.  After some serious talking, John was persuaded to run to the police himself, and a kind officer escorted him to a nearby hospital.  This was our first encounter with full-blown paranoia.

     When John came home again in the next cycle of recovery, he was drug free for months and still bizarre in his behavior.  When we finally took him to a psychiatrist for another opinion, that good man came out of his office after a half hour with John and announced that John was exhibiting the behavior of a schizophrenic. (Maybe this is what the psychologist saw so many years earlier that left him puzzled?) When the psychiatrist learned from us that John began using alcohol and other drugs at seventeen after a healthy and loving childhood, he explained that for male subjects with hereditary tendencies schizophrenia manifests itself at about seventeen, and very frequently the confused subject finds that alcohol is an effective self-medication.  John’s glass of wine at the television set was typical of such reactions.  His tendency during his high school years to sit quietly in the darkness of the basement was further evidence that John was trying to block out the sensory stimuli that create confusion and sometimes fear for many schizophrenics.  The great mystery of John’s behavior was explained, but only after years of misdirected treatment.  Only in his late twenties did we discover that John’s drug addiction was compounded and probably initially stimulated by his schizophrenia.  John had become a dual diagnosis patient, a sufficiently common category to warrant books on the subject. Now we had two problems to solve simultaneously.

     The psychiatrist who diagnosed John’s schizophrenia on the basis of his observations in the office wanted John hospitalized for further observation.  John was by then an adult and not an obvious danger to himself or to others, so his commitment to the psychiatric ward of St. Luke’s Hospital in Bethlehem was at his discretion.  We knew that John would not easily agree to hospitalization, so we drove him to the hospital parking lot without his foreknowledge of our destination.  Once there, John balked.  He said he was afraid to leave the car. We were stymied until a wonderful nurse came out to the car to talk to John.  Under her calming influence he agreed to voluntary commitment.

     The medication administered in the hospital snapped John out of the confused state associated with schizophrenia within twenty-four hours.  Pat and I felt that our son had returned to us, despite the side effects evident from the medication available in those days (Haldol).  From the doctor’s perspective, the reaction to the medication confirmed the schizophrenia diagnosis and demonstrated that John’s illness was treatable.  John did not find this news so comforting, however.  He did not want to be classified as mentally ill and in need of lifelong medication.

     For Pat and me, John’s schizophrenia diagnosis was the answer to the mystery of his bizarre behavior over several years of drug abuse and self-destruction.  If only he had been diagnosed at seventeen or eighteen, his life might have followed a less painful course.  The medical profession did not yet understand what aberrations of the brain were involved in schizophrenia, but there was empirical evidence that the symptoms could be suppressed with certain drugs.  The brain malfunctions that were involved with addiction were even less well understood and there was no documented medical treatment to turn to.

(To be continued in subsequent blogs.)

      

Addiction and Schizophrenia in an American Family, Part 4 of 9

         ADDICTION AND SCHIZOPHRENIA IN AN AMERICAN FAMILY, Part 4 of 9

           Adapted from “A NEW AMERICAN FAMILY: A Love Story"               

.                            Published by the University of Arizona Press

 Part 4   

     John was never a rebellious or angry young man.  He always cooperated in his treatment, which nonetheless always failed.  John’s complicity in our efforts to keep him clean defies belief, but it illustrates the craziness of our shared ordeal.

     I was trying to do my job as the Lehigh University president at this time.  In that role I was chatting with guests at a dedication of new Lehigh facilities and thinking about the remarks I was expected to make in an hour; when a campus police officer discreetly took me aside to inform me that my son John was in the campus lockup, high on drugs.  I excused myself quietly and went to my son, who was quite rational by that time.  Both John and I realized that he would bolt if set free, but I hated to leave him in our jail.  John suggested that we borrow police handcuffs and lock him to his bed in the President’s House until he came down from his high and I got back from my reception.  This we did.  I went back to my reception and gave my welcoming address.  John was waiting patiently when I returned home to free him from his shackles.

     The cycle of recovery and relapse continued, with each hospital detox followed by a rehab center whose promise ended in disappointment.  John was scheduled to move from one such three-day detox to a thirty day rehab when our daughter Lora was about to be married, and we all agreed that he could attend her wedding before the scheduled rehab.  People who knew John’s recent history were pleased to see him dancing happily at Lora’s reception.  Even in his addiction, John was always charming and never radiated anger as disaffected children often do.  Then John stole some of Lora’s most valuable wedding gifts and disappeared into the streets of the Lehigh Valley.

     Although Pat and I had never been secretive about John’s affliction, we knew that if we reported John’s theft to the police his arrest would be a headline story in the two local newspapers.  Not only was John Likins the son of Lehigh’s president, he was locally famous in his own right as a state wrestling champion.  Nevertheless, we immediately called the police, who found John within a few days. John Likins in handcuffs made the front page.

     The community reaction was quite surprising. I received a hundred letters, almost all reflecting the similar concerns of other parents in the Lehigh Valley, who seemed somehow relieved that even the president of the university shared their problems.  Although the newspapers were simply factual in their reporting, both papers also printed a piece I had written with the intention of having it printed in the Lehigh alumni magazine.  I knew that the story had to break soon and I had decided to break it myself.  Lehigh’s trustees were also quite understanding; they declined my offer to resign the presidency and urged me to stand my ground and face the issues directly. I did so.

     John’s theft landed him in jail, but the courts gave him the option of doing his time in a tough drug rehab called Hogar Crea, which was run by addicts in recovery.  John was there for some time and both Pat and I developed great respect for the men who made Hogar Crea work so well.  This organization was first established in Puerto Rico and many of the Lehigh Valley residents were Puerto Rican, but they accepted John and his family comfortably.  Despite their poverty-stricken lives, their drug use and associated criminal activity, and their lack of education or any prospect of success in this competitive world, many of these men were admirable in their own way. John learned a great deal, but not enough, from these men.  Pat and I may have learned more from John’s experience in Hogar Crea.  There is no doubt in my mind that these recovering addicts were better able to deal with drug addiction than the psychiatrists in John’s prior rehabilitation environment.

     After a period of recovery and subsequent relapse, John entered a rehab in Riverside, California, and a year later came back home to try one more time.  Always we had an agreement that any drug use would send John back to Riverside.  When after some promising months John did not return from his morning run, Pat and I confronted him when he got home after lunch.  Yes, he had been using drugs, and yes, he knew that he would have to go back to California. Within an hour John was on a plane to Chicago on his way back to California. Everyone was in tears, but tough love requires standing by your rules.

(To be continued in subsequent blogs.)

                   

                                            

Addiction and Schizophrenia in an American Family,Part 3 of 9

      (Adapted from "A NEW AMERICAN FAMILY:  A Love Story,"          Published by the University of Arizona Press, 2011)

                                                                                                                                         

(continuing…) 

     Finally we come to John’s story, which is characterized by extremes in every direction.  Pat and I knew from John’s infancy that his extraordinary energy would have to be channeled constructively, and fortunately his natural capabilities enabled him to excel on many fronts, most notably in the sport of wrestling. John was winning state championships in New Jersey for his age group and weight class soon after his introduction to the sport as a member of the community wrestling team Pat and I coached in Park Ridge, New Jersey when he was a boy. He continued his winning ways in high school, winning a Pennsylvania state high school championship in his junior year.  John was a fierce competitor; he took on every challenge and almost always won his matches.  The ultimate indignity for a wrestler is to lose his match by a pin, and in all his years of wrestling John was never pinned in competition.

     Despite all the triumphant moments that I savored as an old wrestler cheering for his son, the most memorable of John’s wrestling matches tells more about his character than about his athletic abilities.

     Before our Park Ridge youth wrestling team scheduled a match with a team from another town, the coaches conferred in detail, trying to arrange a positive wrestling experience for every kid who wanted to participate.  We didn’t keep team scores, but individual matches for dozens of kids were won or lost. 

     A compassionate coach in a neighboring town asked if our 75-pound wrestler would wrestle a mentally challenged boy who had never wrestled before, just to give him a positive experience.  Our wrestler agreed to do it until he saw the boy, who was visibly clumsy in his movements and obviously slow in other ways too.  With the gym full of people, our 75-pound wrestler couldn’t face the embarrassment of going out there with “that retard.”  John had just finished his match at 65 pounds and he volunteered to wrestle again.

     The match that followed was a beautiful demonstration of the purest spirit of our son as a competitor.  John made the wrestling feel real to his opponent, falling down with the boy on top, rolling around for dramatic effect, and finally going to his back to be pinned for the first (and only) time in his life.  Both boys had a great experience that day.  I have never been more proud of my son.  His compassion for that mentally handicapped boy is particularly meaningful to me in retrospect; when John much later in life became mentally impaired himself, he was not always shown the same respect.

     After his dramatic success at the state high school wrestling tournament in the spring of 1986, the bottom dropped out for John.  As his proud parents, we felt that the bottom had dropped out of our lives as well.  Always vigilant, Pat discovered a marijuana pipe in John’s back pocket, which we found shocking.  John was too dedicated an athlete to smoke cigarettes and initially he seemed no more likely than I had been to get into trouble with alcohol.  We did however find disturbing John’s drinking alone, using alcohol as a sedative, as in the following example:  One afternoon Pat appropriated from John a large glass of “grape juice” that he was drinking in the living room while watching television, endangering the new carpet; she was astonished to discover that the glass held red wine.

     When Pat found the marijuana pipe in John’s jeans, she confronted him angrily.  He seemed unconcerned.  John accepted our insistence on counseling, and he left his counselors puzzled. They saw John as a good kid with fine values, but he persisted in using alcohol and marijuana.  In retrospect, we see that John’s psychologist offered a clue that we did not catch; he said that there was something going on within John that he could not identify.

     John escalated within a few months to snorting cocaine, which seemed to the people who thought they knew John as totally out of character.  When Pat and I took John for the first time to a local hospital for drug detoxification, we both came down the elevator in tears.

     John spent thirty days in an upscale rehabilitation center under the professional care of psychiatrists, nurses, social workers and counselors.  Within a week of his return he was using again.  He spent ninety days in a tougher environment in Erie, Pennsylvania that was essentially run by recovering addicts, and he returned home with every promise of staying away from drugs.  He re-entered high school, led his team to the state tournament and graduated with a wrestling scholarship to the University of Pittsburgh.  He entered Pitt for the summer session to begin his freshman year and when the wrestling season began he made the starting lineup immediately.  He seemed to be on his way to the realization of all his promise.  However, before Christmas he relapsed again. The Pitt wrestling team rescued him from the dangerous streets of Pittsburgh, but his promising wrestling career was over.  Pat and I took him back to our home in the Lehigh Valley for further treatment.

   

(To be continued in subsequent blogs.)

Peter Likins