Mary M

Two Knocks, December 13, 2013

He sat quietly in a booth nearest the window watching the people file into the gas station across the street. He had traveled 72 miles, on foot, to end up at Pat’s Pizzeria staring out the window and waiting for further instructions. One knock and you go home, two knocks and you cross the street. He waited for the knocks. One, two. He was sure he had heard two.

Decades earlier, when he was three-years-old, his favorite color was black. His older siblings liked all the colors of the rainbow and would color with them happily. Not him, he hated to color and he would only use the black crayon when I convinced him to try. This was the first time I remember thinking there may be something wrong with him or, at least, something different…but I had no idea what was to come. No one did, including him.

He soon began having to tap on his knees in even numbers, first with his right hand and then with his left. He did this in this fashion, this rhythm, each time, especially when he would play video games. I’m not sure why he felt he needed to do this, and I’m sure he didn’t know why either, it simply was necessary. I know this because seven-year-olds tell you about such things.

By age nine he was diagnosed with ADHD, OCD and had developed a facial tic. In class he would compensate by pretending that there was something very interesting on his right hand side which caused him to jerk so suddenly in that direction. Naturally, he would have to do this several times a day in accordance with the arrival of the unpredictable tic. I’m not sure that his classmates bought it. As a matter of fact, I’m sure they did not, but I assured him that they did. I always tried to calm his fears. I was a good mother.

There were so many doctors and so many failed medicines. Nothing worked because no one knew what was wrong with him. One doctor thought it could be Asperger’s, but every other doctor disagreed. A teacher suspected he may be having mini seizures so he was tested for this too but no, it wasn‘t that.

In third grade it was discovered that he had an above average IQ, 139, but yet he was failing in all areas….math, reading, social skills…all of it. This immediately made him eligible for Special Education classes which continued with him thru high school. He hated this and I hated the annual IEP meetings. Each year his teachers and I would get together and come up with his Individual Education Plan, “the plan”, as it was called. It was a bunch of bullshit. Designed only, it seemed, to check off boxes on a sheet of paper because it never really helped him. But then, nothing helped him, not me, not the doctors and certainly not the public school system.

By age fourteen he discovered pot. He used to sneak up into the crawl space above the garage and get high with his friends before I got home from work. This time was particularly hard on me because I was so sure he would be spared the life of his father. I was wrong. He loved his pot and I couldn’t stop him. Maybe I didn’t try hard enough.

With the drugs arrived the usual cast of under-achievers in his life, Kevin, Ben, Trip and Lacey…bonded by their indifference to the world around them and their love of drugs, rock and rap and skipping school.

Ben and Lacey were a couple when I first met her. She was beautiful, too beautiful for Ben. Why would such a beautiful girl hang out with these rebel boys? To this day I still do not understand why she would sit in his room with the other boys and play video games and read for hours on end. She was….is, so quiet. I still do not know Lacey and I am sure I never will. But what I do know is that she loved him for a time and for this I will always be grateful.

In the days of junior high and high school I took him to see many different psychologists. Too many to name, less one, Chuck, who was his favorite. Chuck introduced him to Buddhism. It was a perfect fit, he being so passive and kind. I used to think he may just make it to Tibet one day. If anyone could, it would be him, I remember thinking this…or hoping this…a lot. But neither Buddhism nor Chuck could help him. He continued to do poorly in school, hang out with his friends and smoke their pot. And then, in his senior year of high school, came the miracle.

I remember the days leading up to it very clearly. We had visited the dentist and discovered his wisdom teeth were impacted and needed to be removed. After the surgery I brought him home to recover. I remember thinking he looked as though someone had hit him in the face with a baseball bat. His jaw was so swollen it was really difficult to look at him. He was seventeen and able to drive on his own so I let him return for his follow up visit the next week by himself. It was then, when he returned home from this visit, that things began to change.

He was suddenly alive. Really alive. He was smiling and happy and excited to share with me his plans for the future. Now, for most families, this may not be considered a miracle but it was to me. Since the days of the black crayons he was depressed and void of any plans for his future. Yet, here he was, home from the dentist’s office and all of a sudden excited and filled with ideas and plans! It was, simply put, a miracle.

He was gushing with excitement to tell me….he wanted to become a nurse! We were both so excited. I know I cried…he was going to be okay! He began staying up late, every night, researching nursing programs and then jumping up early for school each morning. He received “The Most Improved” award from the principal, Mr. P. We all went to the ceremony, I was so filled with pride as I watched him walk up on that stage…..but then, a few weeks later, the other shoe dropped. On a spring day in May I got the call that changed our lives forever.

I had received many calls from his school regarding his behavior over the years but never one quite like this. It was from Mr. P. He never made the calls but today it was him on the phone and he said, “Mary, you need to get down here right away. There is something very wrong with him. We have never seen him like this before. Please come right away.”

When I arrived I was immediately shuffled into the main conference room where he, the school psychologist, several of his teachers, the assistant vice principal and Mr. P. were seated around the table waiting for me. He was dressed in weird clothing that I later learned he had purchased from the local thrift store. He resembled what I’m sure he thought was a college professor. He wore brown corduroy pants, a navy blazer and a button down shirt. A far cry from his typical band t-shirt and faded jeans. All he needed was the pipe. He sat quietly, legs crossed, ready for our meeting. He was in total control.

Mr. P. began the meeting. Apparently, he had shown up to school that day with hundreds of leaflets that he began passing out to his classmates and teachers calling it his Manifesto. He went on to explain to us, “It is a very important piece of work that will resolve many of the problems affecting this nation and the globe.” He was so humble, so proud! “Of course”, he continued, “there are consequences, but ones I am willing to accept. Once the CIA and the FBI discover what I have written they will have me assassinated. By the way, Mom,” he said, as he pointed to the phone on the desk, “They have already begun tapping our phone at home.”

Everyone was silent. They all looked at me to say something, anything, but what could I say? I focused and then, finally, I said, “Honey, maybe we should go to the hospital and talk to the doctors because they are really smart and they would know what to do or say.” He agreed so we went. It was that simple.

When we arrived at the hospital I didn’t know exactly how to describe to the receptionist why we were there. Words like “psychotic” or “manic” were not yet part of my vocabulary yet. Instead, I asked him to explain his theory to her. Thank God, she understood. He was given a gown and asked to wait in a bay in the ER for the attending physician. I kept him occupied and quiet, marveling together at his writings. In reality, the writing was crammed onto the page and written, in some instances, in circles. Literally, the words were written in circles around the page. It was all nonsense but to him it was a work of art, or more specifically, the answer to all mankind’s social economic problems. He was to be famous….

We waited for what seemed to be an eternity when Jim finally arrived. Again, I didn’t know how to explain what was happening so I asked him to explain the details of his Manifesto to Jim. Jim began to reason with him, trying to unscramble the words that he had written. THIS was too much for him. He jumped up from the bed, ran thru the corridor out of the ER and into the main receptionist area. There, with nowhere else to go, he leaped up onto the receptionist’s desk, stripped off his gown and shouted, “Repent! Repent! Jesus died on the cross for your sins!”

What happened next is today a distant memory of things long, long ago. He was taken down from his perch, covered with a blanket and given a shot, some type of sedative. I remember people looking at us, staring at me, as if to ask, ‘Who is this person, this freak?’ I didn’t know either but I would soon find out.

Once he woke, he was admitted to the mental health ward of the hospital. Luckily, since he was only 17, to the juvenile section. This, I remember, was a huge relief. How could my baby be put in with psychotic men and women? Better that it be with other children like him.

When the diagnosis came, it was startling. But, finally, after all these years, I had an answer that made sense. He was schizophrenic. Schizoaffective, to be exact. Simply put, he has schizophrenia and bipolar disorder. He has it all. It made perfect sense.

Another day I will have the strength to write about the next eight years but not today. In short, soon after his first psychotic break he and Lacey moved to Miami together, were fine for a while and then he relapsed. He doesn’t believe he is ill, he thinks it is us, the ones who love him, that cannot see. He is clairvoyant, can we not see this? Can we not see the signs like he does? Why does no one understand? This is his world which is why, on a cold December night; he walked out of his brother’s home in Downingtown, Pennsylvania to Edgewood, Maryland.

After he was sure there had been two knocks, he paid for his slice of pizza, walked out the door and crossed the street to the gas station.

He is 27 years old and the love of my life, my Michael, can anyone help him?

9 responses to “Mary M”

  1. Patty McN says:

    Rose Hill Center
    http://www.rosehillcenter.com
    A place where miracles happen every day.

  2. Stephanie G says:

    I loved you’re story and it almost left me speechless. My condolences to you. Its frustrated how a doctor who is supposed to have all the answers cannot tell you what is wrong with you. The truth is there are a lot of us who struggle with mental illness on an everyday basis.

  3. Susan A says:

    Thank you for sharing your story. My prayers are with your son and you as he continues to try and survive his mental illness. I only wished more money we spent on mental health in this Country! People are struggling everywhere with no funding, proper mental health facilities, schooling or understanding. ♡

  4. Jeanne F says:

    There are no perfect answers or perfect cures for the mentally ill. My perfect 15 year old boy (IQ 137) suffers from Bi-Polar. Also not right from the start, when there was no help available. I had to make my own. Mental Illness is a life sentence without parole. Yes we can treat it but just as soon as we think we have it licked…Boom here comes a whole new set of symptoms. Acceptance is the key, accept the illness, search for answers , search for support and help but ACCEPT the illness, until you do you will not have a moments peace. Anyone in you and your beautiful son’s life must do the same or be dropped, period. In your son’s case, not believing he is ill is part of the illness it is called: anosognosia. It is in these moments that mental illness is a medical emergency, because he truly believes every hallucination, auditory or visual and that is where the real danger lies. He is a threat to himself and others and you must intervene, you, you, you. Mental illness is forever and ever. Accept it and stop worrying about Michael’s normalcy, worry about his health. I see that your story is 2 years old, I hope you have found a way to get your son stablilized, because that is your job, your only job.

  5. Carol S@ says:

    My child, too, us slipping into this illness. My heart aches for you and your son. Sometimes he’s fine, other days, his paranoia & psychosis take over. He’s exhausted from trying to keep from letting the voiced he hears from taking over. It’s heartbreaking when his teachers tell me he’s unable to stay in the cafeteria at school because of the bugs he’s seeing, or the people who are mocking him or chasing him- are his auditory & visual disturbances.

  6. Charla B. says:

    Thanks I really needed to read this. My husband is bipolar and it’s been a daily struggle. I’m his #1 supporter but sometimes it gets hard.

  7. Carly says:

    Mary M.,

    #1 Purpose of my Reply-Applaud your support for your son:

    -Your calmness through his illness was remarkable
    -You tried so many ways to help him over many years(from all those IEP’s to therapists to psychiatrists)
    -Wow, you sound like an awesome mom; he has a tough illness, he has a great mom…

    #2 Purpose of my Reply-offer you a positive story:

    -Our son’s onset of illness/psychosis was after graduation from college
    -He struggled through 6 1/2 agitated, pretty much joyless years ( on/off meds, 4 51/50’s, brushes w/the law, similar anosognosia (symptom of bipolar II and schizoaffective disorder where there is a lack of insight & he did not recognize that he had an illness), intermittent employment, briefly promising times, following by highs/lows, isolation from friends, paranoia to the point where he turned against me and he eventually relocated outside of area w/grandiose plans…
    -Incident w/the law requiring jail, state mental institution,sentencing, probation, and required 1 year in a treatment program

    He has been compliant with his meds for 4 years; he slogged through the difficult 1 year treatment program plus probation/ and half a dozen hearings for 3 1/2 years; eventual expungment of his charges; lives independently; has a broad social circle including long-time childhood and college friends; has a girlfriend; is employed; is content w/his life; sees his psychiatrist monthly and a therapist bi-weekly; and IS aware that he has a chronic illness that will require lifelong medication and a lifestyle balance. When he experiences any symptoms(perceptions of a particular situation), he calls me/someone/his therapist/his dad who lives out of the country to ‘bounce it off someone’ and possibly reframe it…

    It sounds funny to be grateful for the incident w/the law, but that ultimately changed his road. I am grateful for NAMI, Al-anon(even though he doesn;t have substance abuse issues, their support group helped me), all the moms/dads/relatives/friends that I commiserated with while waiting hours(after driving for 5 hours) for 30 minute visits in jail/state mental hospital waiting rooms, and books.

    There were years that I didn’t know what I would come home to. During those times, despite what I said, I doubted that he would get his life back. Things looked so bleak and I always feltj

    Our son has his life back. I keep a gratitude journal to this day. “G….. getting his life back” is always on my list. I know that we are very, very lucky…

    I hope that this brings you a little light for the future…

  8. Mary Mack says:

    Thank you, everyone. Your heart-felt words mean the world to me. Thank you, BC2M for giving me a place to share my son’s story.

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