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A Growing Numbness

Chapter Three

As a teaching-fellow in law school, I learned that a colleague's son was born with a defect in his small intestine. For years, no one knew of the defect, so he suffered enormous pain in silent acceptance, believing his pain to be normal. When he was seven, the condition was diagnosed and surgery was performed successfully. What a relief for the boy!

I invite you, as you read this chapter, to consider the joy in store for you if you recognize that you have grown numb to your emotional pain, just as this boy did and as I did. You may not have realized you could be cured of your pain because you have not recognized that you are in any pain.

As you read, you may recognize your pain through my experiences. Another way to recognize your pain is to consider what you say when you are asked, "How are you?" If you say, "I am surviving.", or "Getting by.", or "Can't complain." -- all very common responses -- your underlying belief is that life is tough and not joyful. You may well be subtly saying that you are in some pain.

Never have I had as much pain as comes from a defective small intestine, but I was as oblivious to my emotional pain as the boy was to his physical pain. In 1985, I thought was a success. I was a graduate of Harvard Law School cum laude and was an Administrative Judge at the Nuclear Regulatory Commission. My job was secure and my salary, substantial. I had been married for 18 years and had a son whom I loved very much. I had taught Sunday School at Cedar Lane Unitarian Church and was elected Chair of the Religious Education Council. I also had campaigned for the Nuclear Freeze, and had been a featured speaker on many occasions.

I felt accustomed to the bad news in my life, which had hit me many years before. My wife, Mary Anna, had lost her kidney function in 1970. She had been on the kidney machine and peritoneal dialysis (the use of fluids in the abdomen to cleanse the blood) since then. The first five years of her "end stage renal disease" were the hardest for me. I had to get used to constant medical tension and to the fear of her death, including:

• Fear that dialysis would not remove enough water from her body, causing water retention in her tissues and high blood pressure.

• Monitoring her blood pressure.

• Chronic acute anemia, caused by the loss of a kidney hormone needed to trigger red blood production.⁽¹⁾

• Regular bouts of depression (who wouldn't be depressed?!!).

• Broken bones because of bone disease (osteodistrophy).

• Repeated access surgeries for blood dialysis (to assure that surgicially enlarged blood vessels would continue to be available so that she could receive 13-gauge needles needed for her blood to flow properly into the lines and through her kidney machine).

• Surgical removal of the parathyroid gland to correct hormone imbalances that were affecting her walk and her muscle use.

• Lingering virus illnesses.

• Vomitting from acid stomach and hiatal hernia (the stomach pressing on the diaphragm near the heart).

• Repeated access surgery for peritoneal dialysis (which Mary Anna preferred for about ten years): the assurance, through surgery, that Mary Anna had a functioning plastic tube that remains in the belly and pierces the peritoneum so that fluid may be passed through the tube to permit dialysis.

• Antibiotic treatment for peritonitis, a potentially life-threatening infection of the peritoneal cavity caused by infection traveling along the implanted plastic tube into the peritoneum.

This condition of my wife was accompanied by continuous problems related to our son, Benjamin, whom we had adopted in 1970, when he was only seven days old. We both deeply loved Benjamin, perhaps too much. His behavior has troubled our home for a long time. He is highly hyperactive, apparently at least in part from genetic or pre-natal causes; and he may also suffer from borderline personality disorder.⁽²⁾

I also contributed to Benjamin's difficulties, out of my own lack of awareness and my unwillingness to develop and apply any systematic, disciplined approach that both Mary Anna and I could mutually support. My unwillingness to develop a unified approach to Ben was compounded by my determination to be the "primary parent" because I feared that Mary Anna might die and I wished to be a continuing source of strength for my son.

At the age of five, Benjamin's nursery school teacher could not control him and we took him for diagnosis to the Psychiatric Institute, where he was seen by a psychiatrist and we were seen by a social worker, over a period of months. Although we may have developed some insights through this process, nothing affected our life at home with Benjamin. No one successfully brought home to me how difficult it might be for me to change my own behavior in ways that would support my son.

By Fourth Grade, Benjamin had taken to behavior that was beyond the ability of his elementary school teacher to control. He was a regular disruption, hiding in closets and not doing his school work. So we had him transferred to the McClean School of Maryland, which specializes in children with learning disabilities and had a more structured situation for him to work in. We also began a course of family therapy with another psychiatrist, who tried giving Ben drugs (ritalin and imipramine), which had some mild success. But this doctor was ineffective in helping us to make any lasting improvements.

In eighth grade, Benjamin's behavior at home continued to be highly disruptive and my behavior continued to intensify his difficulties. I would help him with homework, even if it meant that I would endure his swearing, spitting and even hitting. I tolerated this behavior because I wanted so much for him to be a success in each day's assignment and had no idea how to stop the aggressive behavior. But that was only part of it! Ben would periodically run away from home, either hiding in the woods across the street or sneaking back into the house to observe our frantic frustration. He would scream at us. He would lock himself behind doors in the house. He sometimes threw food or threatened to break valuable possessions. And I sometimes became so angered that I fractured three internal doors in our house from banging on them and there were times that I spanked Ben for extended times and even hit him forcibly in the arms.

At school, the children would bully him and, without telling us the reasons, he became miserable. So we agreed that he could transfer to a public junior high school at the beginning of ninth grade. This was a terrible decision. It placed Ben in a situation in which he grew close to a group of teenagers styled themselves, "The Mercenaries." They were involved in criminal activity and in using marijuana. Even when Ben was dropped off right in front of his Junior High School, he would go around back and would not go in.

Through all of this, I was unaware of the depth of Ben's difficulty and I remained optimistic that Ben was about to get his act together.⁽³⁾

It is obvious, in retrospect, that my life was close to flames. But I kept going to work each day, retreating into my daily routine. I considered myself to a superb lawyer, a loving husband and father, a good Sunday School teacher, and in every way in control of my life. I had grown numb to my own misery.

1. A synthetic hormone (erythropoetin or EPO) is now being used to help kidney failure patients with chronic anemia, but the drug was not available in 1985.

2. In 1997, when Ben was 27, we discovered that his illness responds somewhat to Olanzapine (Zyprexa), a drug developed for schizophrenia but also discovered to be effective for bipolar (mood swing) disorder and for borderline personality disorder.

3. ³Now that Ben is 23 and has been in and out of drug treatment programs, I still retain my optimism -- although I am now more realistic in believing that I have little control over what Ben chooses to do.