An Extra-Ordinary Right

Just scratch the surface…. It is a thought I have often had over the past three decades of raising handicapped children. When you think you have a hard lot, all you have to do is scratch the surface of someone else’s life, and yours suddenly looks not bad at all. There are those who would say that God gives each person no more than he or she is capable of bearing, but I don’t think God gives us our burdens at all. Rather, in my experience, the burdens come from the workings of nature, our own ineptness, and the sometimes ill-intentioned behaviors of others. God steps in and provides the support when our load becomes an overload. Breaking points differ, though, for one person’s load is another person’s overload. That is what Eliana and I learned three decades ago.

When my children were little, Eliana’s were, too. Like my children, hers had medical problems. Her older son was born with Immune Deficiency Syndrome. He was the first “bubble baby” to be raised outside a bubble, mainly because Eliana is a force to be reckoned with. She was unwilling to let him be put into a bubble. Whenever I thought my problems were bad, I would call Eliana, who had been my best friend in college. We ended up living only 30 miles apart for a while when our children were small. I was at Renboro University, and Eliana was working for an insurance company in nearby White Spring. Eliana and I would compare notes. Somehow she always thought that my load was worse; after all, I had two children with problems. I always thought her load was worse; after all, her son, Paul, had a much smaller chance of survival than did Doah and Noelle although for a while Doah had been given no chance at all of living, something that I, like Eliana, was just not willing to accept.

Eliana had another difficulty, one that I did not. She was Jewish, and her husband Bob was Catholic. Donnie and I, both being atheists, never had to deal with familial religious dissent on top of the strain that birth defects put on a marriage and family. Eliana and Bob had few problems in the early years of their marriage: she went to synagogue on Fridays and he went to mass on Sundays. Then came the kids and the struggle as to choice of religion in which to raise them. Judaism being matrilineal and Eliana being matriarchal, Eliana won. The children were raised Jewish, and Donnie, Eliana's children, Eliana, and I had a wonderful time at their bar mitzvah and bas mitzvah, as did Bob.

The friendship that Eliana and I had helped us both in many ways. One of the things that Donnie and I worried about in the early years was appointing a guardian for our children. In the event that something should happen to us, we wanted a guardian who would raise them similarly to how we would raise them, who would fight for them, and who would teach them to fight for themselves. We certainly did not want my abusive mother raising them, and Donnie's mother was too old and would have been unable to cope with all the defects -- she cried whenever she thought about them. Eliana was a perfect choice. She was young, and she was used to handling children with birth defects. She agreed. Of course, she would -— for the same reason that I agreed to take in a dying child artist from Siberia during a period of time when we had no money, I was partially unemployed (trying to start up an independent institute), and our kids were in the delightful but demanding teenage years.

Eliana, in spite of her robust ability to handle nearly any crisis sent her way, had a limit to her emotional resilience. She found that limit in the summer of 1982. She and Bob had taken Paul and Mavis, their younger daughter, to Philadelphia, Eliana’s home city, to find a good oncologist. The ones in Renboro declared that treating Bob for cancer that came from being exposed to Agent Orange during his military assignment in Vietnam was useless. The cancer was too advanced when the doctors found it. As usual, Eliana was not willing to accept such a prognosis. She packed up Bob and children, took a leave of absence from work, and drove eight hours to Philadelphia to meet with doctors she trusted. The doctors there, as Eliana suspected, were able to get Bob’s cancer in remission, and Eliana and family made plans to return to White Spring.

That was when she received the urgent call from the pediatrician. Mavis, the healthy child, apparently was showing signs of juvenile diabetes, based on tests done right before the family left for Philadelphia. With her usual enthusiasm substantially subdued, Eliana returned to White Spring with a still-ailing Bob, daily medicine for Paul, and concerns about Mavis. Ah, it would be so good to be home after eight weeks away!

As she drove up to their house, however, something seemed wrong. Something was wrong. The back door was swinging on its hinges. Eliana walked in cautiously. No one was there. The place was empty, very empty. The house had been ransacked. Nearly every personal possession she cared about was gone.

Eliana did not cry that day. She was too stunned. She did not cry the next day, either. Instead, she did some research and found out who was considered the best psychologist in the White Spring area and made an emergency appointment.

At the psychologist’s office, Eliana laid out her whole story. I imagine that took some time! When she finished, the psychologist was silent for quite a while. Then, he quietly said, “I’m sorry. I will not charge you for a visit because I do not have any good answer for you. If I were in your place, I would just go have myself a nice little nervous breakdown. I think you have earned it.”

Eliana started to laugh. She laughed all the way home. She never did end up crying over the lost possessions; she just rebuilt her house and her life. Bob is still alive; his cancer has been in remission many years. Paul outgrew his lack of immunity somewhere around age 12. Mavis, it turned out, never did develop juvenile diabetes; it was a false alarm. Both children are now married with families of their own.

Now, though, any time I feel that I have an overload, I think of Eliana and her (and my) entitlement to a “nice little nervous breakdown,” and I laugh like Eliana did. Once again, a divine intervention in a very unlikely source — an honest psychologist with an odd sense of humor — had given both of us — Eliana and me — a mechanism for handling our lives when they went into overload. Somehow, the knowledge that the best psychologist in White Spring had given us a free prescription for a nervous breakdown was enough to lift our spirits. Neither of us ever filled that prescription.

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Adapted from an excerpt from Blest Atheist (copyright 2003, MSI Press).